Life, not just existence

Get a haircut, get a real doctor

2008-08-27T10:28:00.003+10:00

Actually, while that title was supposed to be a take on the line "get a haircut, get a real job", it also describes exactly what I have done since I last posted here. Of course I have done a LOT more than that, but I have done those two things. The haircut was the easy bit, I just waltzed into my sisters' hairdresser's place and said "Do whatever you like with it!" (both my sisters have amazing haircuts). She did and I still love it.

Going to see a new doctor was a harder thing. I have been umming about it for literally a year or more, mostly because the initial consultations with this new doctor are exhorbitantly expensive (think daylight robbery, then double it), which really put me off. But now that I have been there 4 times, I know i'm getting what I paid for, and have no regrets about ditching my other doctor, who seems like a fraud (was a fraud when it comes to treating chronic fatigue syndrome) by comparison.

The doctor I see now has taken a totally scientific approach to determining my symptoms, and what treatments will best alleviate those symptoms. In addition he seems to keep up with current pratice and try to actively continue to better his own practice, rather than resting on his laurels (which, given the number of thankyou cards with photos of people bushwalking abd rockclimbing, he could well do). He has put me on a whole suite of meds, which I would usually not be comfortable with, but for the fact that he has explainned why each of them is important and what symptoms they will affect. And they're working. I have overdone it a few times since I started the meds, but I've only had one in-bed day, whereas by rights I should have had many.

I am going to try to revive this blog, as I can see there's still a bit of interest despite my blatant neglect for the last few months. I won't be posting too often, but I will try for once a week. Hope you're all staying happy, and as healthy as you can.

Busy bee

2008-03-24T18:36:00.004+11:00

Hi All,

I've been puting off writing this post because I had hoped to come back to regular blogging. But I have been and will probably continue to be run off my feet with uni and life in general. Yes - this means I am doing fairly well at the moment. I guess I think less about CFS when I am well-ish and so I have less to say too. While it's good for me to get some CFS-free headspace, it's not so good for maintaining a steady flow of interesting blog posts.

Which is why I have decided to take a proper break for a few months. Normal transmission will resume in July, but until then I will be focussing on my work and then taking a month-long break in Europe.

I wish you all improving health in the meantime.

Catch you in July!

Tired but wired

2008-02-13T15:48:00.003+11:00

Haven't been sleeping well. Don't know why, but suspect this might have something to do with it. My favourite author as a child has just released the 5th book in a series she has been writing for over 20 years. I started reading the book about 19 years ago, and have been hanging for this book for about 7 years now. I bought it finally a few days ago and I think maybe it's gotten under my skin. Seems I have been reading every second I can sapre (and an awful lot I shouldn't have) and have (coincidentally? perhaps not) not been sleeping well. Now it's finished perhaps I can resume normal(ish) sleeping habits.

Sweet dreams.

Heath Ledger

2008-01-24T21:54:00.000+11:00

As fan, and as a young Australian of a similar age to actor Heath Ledger, I was shocked and very sad to hear of his death. Assuming accidental death by overdose or adverse reaction to a drug (which is jumping the gun a bit given the coroner's report isn't conclusive yet), it's also a frightenning reminder of how dangerous over the counter drugs can be.

I first saw Heath Ledger in Two Hands - a great Australian movie (see it if you get a chance, it's shot in my old stomping ground - the Cross), then fell in love with him in 10 Things (a favourite for me because of the sisterly relationship in it). I've avidly followed his career since then and have a heap of respect for his acting. It's so sad to see such a talented young man die with so much still to live for.

RIP Heath. I'll miss your smile and presence gracing the silver screen.

Good doctor, bad doctor

2008-01-16T10:29:00.001+11:00

I'm sure I've harped on before about the importance of having a good doctor. Even if you're a relatively healthy person, a good general practitioner is a must. I have seen a number of different doctors since I move cities almost 4 years ago. While I was a healthy person (ie before CFS), I never really worried about the quality of the GP I was seeing for the minor health problems that inevitably crop up occasionally.

All that changed when I had glandular fever and later chronic fatigue syndrome. The doctor I was seeing at the time has turned out in hindsight to have been a bad doctor. I ditched her after she sent me to a psychologist because she thought I was depressed when I was not recovering from chronic fatigue syndrome. She also never bothered to investigate why I suddenly became iron deficient after having glandular fever, brushing off my concerned remarks about the fact I had never been iron deficient before, despite going through a 2 year phase of not eating red meat. And one day, before I had realised I had chronic fatigue syndrome, she brushed of my suggestion that my tiredness etc might be caused by food intolerances or coeliac disease, saying "Oh, no, that's very unlikely".

And now I am furious, because I saw my new, wonderful, inquisitive GP yesterday because I have been having unusual abdomenal aches, and she was shocked that no one had bothered to investigate why I was iron deficient, and also raised the possibility of coeliac disease being a potential cause for the anemia and possibly other things. So, I'm off to have a suite of tests and then we'll see what we see, but I tell you what, if it turns out I have coeliac, I swear I'm going to throw a brick through the window of that previous doctor. Well, not really, but I feel like doing it already.

Get yourself a good doctor. And if your doctor isn't inquisitive, get rid of them even if they haven't proved themselve to be bad yet.

Memes

2008-01-05T11:23:00.000+11:00

I like the word meme. And I like the concept - ideas that float about in the common consciousness. I recently had a meme experience after a friend introduced me to the concept of lactose-free dairy milk. He's lactose-intolerant and this is his preferred milk substitute, as I discovered over a cup of coffee. After that cup of coffee, I have encountered lactose free milk several times in the last couple of months - in a cafe advertisement, at a friend's place in the fridge, in discussion with another lactose-intolerant friend... Too many times for it to seem a coincidence seeing I had never previously heard of lactose free milk, despite having been friends with lactose-intolerant people for years.

Anyway, I'm not sure the following technically classes as a meme, but lilwatchergirl tagged me with it and it looks like fun. I'm not going to pass it on, but for any readers who want a crack at it anyway, here are the rules:

1-Link to your tagger and post these rules on your blog
2-Share 7 facts about yourself on your blog, some random, some weird
3-Tag 6 people at the end of your post by leaving their names as well as links to their blogs
4- Let them know they are tagged by leaving a comment on their blog.

So... Seven Facts about me...

1) If you see me with long delicate nails, yes, they are real. I've always grown and painted my nails.
2) I am an avid reader and can finish a sizable book in a day or two in between other tasks.
3) I love home grown vegetable but am not a green thumb so I rely on someone else in the house to grow them.
4) I have lived in 3 of Australia's major cities and have never lived overseas (abroad for those who don't have to go over seas to get to another country).
5) When preparing food, I cut up chicken with a sharp knife and a fork.
6) I have performed at both the Sydney Opera House and the Melbourne Cricket Ground, despite not being a performer by trade or hobby.
7) I have pet frogs.

New Year

2008-01-02T23:22:00.000+11:00

Best wishes to you all for the coming year. I hope it is a happy and properous one for all of you. I hope you had a lovely restful time over the christmas holiday and enjoyed whatever holiday celebrations you took part in. :)

Wiped out the week before christmas

2007-12-19T22:13:00.000+11:00

Man, I was doing so well. I was all prepared for a weekend at a music festival followed by a week of field work. I was conserving my energy and actually starting to think I could make it through with minimal fallout. But no, fate had other plans.

Wednesday night, I started feeling a bit achey and tired. Thinking it was just a phase I went to bed expecting to feel my usual self the next morning, but instead woke up feeling awful! Horrid stomach cramping and fever and general yuck. "Stomach bug", I thought, and went back to bed. The following morning I was unsurprised to still be feeling awful, but expected to improve throughout the day (in line with the 24 hour bug idea I had), so decided to go to the festival anyway. Spent the whole weekend feeling similarly awful, and probably more so by the end. *sigh* However, I was still surprised by how resilient I was feeling. Apart from feeling terrible every time I moved my torso, my energy levels were fine.

Not so on Monday. Obviously the bug (or whatever) took it's toll slowly. Now I'm feeling better, but my energy levels are shithouse and I keep needing to sleep all the time. Speaking of which... Anyway, could've been worse I guess, it could've happened at Christmas itself.

100 Post Celebration

2007-12-09T17:22:00.000+11:00

I realised looking in my blogger account today that my last post was my 100th! Who'd'a thunk it hey? 2 years an 1 month of writing, and 100 posts. Never thought I had so many words in me. Anyway, congratulations to me, hope you're all enjoying being along for the ride, and here's to many more...

Photo credit: Stuck in Customs

Surviving the silly season

2007-12-07T13:04:00.000+11:00

The silly season can be a tricky time for those of us with CFS. Here are a few tips to make it through without killing yourself in the process...

1. Learn to say "No."
This is one of the best things CFS has taught me. If you can't do something, then it's simple, you can't do it. Usually, you don't even have to make excuses - especially at such a busy time of year, just say "I'd love to, but I simply can't."

2. Plan an amount of activities that will not drain you.
I can't say I'm adhering to this one myself, with a music festival next weekend, a field trip the following week, a road trip the weekend after and then Christmas... So you'll just have to do as I say, not as I do, and use point 1 to get you out of any excess commitments.

3. Tell people in advance of any food allergies or intolerances you have.
Your in-laws or best friend will be perfectly happy to cook up a little extra on the day if you've given them a week's notice that you don't eat turkey OR ham, but if they find out on the day they might be understandably stressed out an annoyed about it.

4. Don't drink alcohol just because it's Christmas if you don't usually tolerate it.
Probably another one I will be ignoring given the wino family I come from and the lovely wines on offer at my parents place. But again - if you drink and you don't usually tolerate it, you will still pay the price, even though it's Christmas.

5. Don't blow your budget on pressies.
Think about what the season means for you and your friends and family (whatever that is, we don't all share beliefs and for many this time of year just means a family time, while for others it is deeply religious) and celebrate that without spending exorbitant amount on pressies and leaving yourself in debt. Perhaps you can get crafty and make presents, or perhaps simply having you attend a social gathering will be the best present your family and friends could want.

6. Try to build some rest time into your plans for January.
If you're at all like me you will probably ignore most of my previous points and completely over-do things over chrissie, so at the very least you should avoid filling up all your restful times in January with activities. Know that you're going to need to recuperate, and plan in advance for it.

7. If you're housebound, bring the season into your home (with help).
Ask a friend or neighbour to drop round a little tinsel or a wreath, and put on the carols on TV on Christmas eve.

Image: Hard-Rain

Escaping the victim mentality

2007-12-06T10:04:00.000+11:00

This post is sparked by some ongoing controversy over at CFSSquared, a blog I keep an eye on. I have been meaning to write it since this post was made, however what prompted me to finally do so was a lovely article in CFIDSLink this morning.

To fill you in, the controversy I refer to started with an argument about the importance of the name "CFS" versus "ME", "CFIDS" or anything else you might want to call this illness. I don't want to get into this argument here - I call it CFS because I live in Australia and that is what it is widely known as here. I don't think this is the best name, but I also think that changing the name is less important than things like remedying the pitiful amount of research dollars spent investigating this illness.

So anyway, from a start about the name, the controversy arose over the different types of CFS patients - those who fight against their illness versus those who passively submit to it's impacts. To my mind, the former can at times do themselves detriment by being to vigourous in their fight, or by denying the fact of their illness, however the former have fallen into the victim mentality which is perhaps more dangerous.

So how do you find the balance? At some level it is important to recognise that you have CFS, and to work within the boundaries that this imposes. To ignore or deny your illness will perpetuate the crash-recovery cycle which we've all experienced and all know is not much fun. On the other hand, complete submission to CFS will probably leave you bedridden, certainly without friends, and probably feeling pretty miserable for yourself. I think whatever your level of disability, it's important not to get to this stage. For me, this means maintaining as active a life as I can without crashing. Going to uni, a bit of walking, and a fairly active social life are all part of this. But I am one of the lucky ones. For those who are mostly housebound, pushing against CFS may mean undertaking some gently stretching exercises on good days, calling a friend now and then, or trying to make the walk to the letter box at the end of the drive.

The important thing is to maintain what activity or mobility you can achieve - not to slip further back into illness, and to try to achieve things that add meaningfulness to your life. I know if one CFS patient who is basically bed bound. Phone conversations are taxing enough to require resting up for. And yet, over the years, she has produced some beautiful pictures of hummingbirds, using her artistic skills, and maintains a website on CFS (ME actually, as she insists on the name thing) which gives information to those who need it.

I'm not saying we all need to be pillars of strength. After my crash-that-had-to-happen, I was pretty down for a while, and I'm still not totally back to my resilient self. I do have days where I want to cry at the injustice of being burdened with this illness, but most days, I try to do what I can and accept what I can't, and enjoy the life I have. I don't give up on working my way out of CFS - if not to a "cure" then at least to full remission, which some people do achieve over time.

One who embodies this attitude is Jennie Spotilla - another blogger I follow, and also the Chairperson of the Board of the CFIDS Association in the US. It was her article in CFIDSLink that inspired me this morning. Jennie is mostly housebound, however in addition to being an active member of the CFIDS Association and an active and inspiring blogger, for the last 18 months she has been working with a physical therapist to improve her mobility. Initially this involves stretching, but this has worked itself all the way up to a walk to the street corner - a big achievement for someone who has not walked this far in over 10 years. Read about it for yourself here, and let it inspire you as it did me.

Image: Fort Photo

The crash that had to happen

2007-11-22T20:37:00.000+11:00

Here in Australia we had a prime minister in the early '90s who infamously once said that the economic recession of the time was "the recession we had to have". I'm not going to get into politics 2 days before a federal election, but I was reminded of that comment once I became slightly lucid this afternoon after a massive 2 day crash. I had basically overdone things to a major degree. The afore mentionned concert followed by a day of pent up energy, then on the saturday an early start for rowing training (I steer the boat) then a rowing race, the a 1.5 hour drive to the country for a friends engagement party that finished around 3am with me (and others) singing bad karaoke. Needless to say, like all good things, it all had to come to an end.

I made it through monday and tuesday, just. Then I had trouble sleeping on tuesday night. I got up ok on wednesday, but by the time I had made breakfast it had become abundantly apparent that that was the most exciting thing I was going to be doing that day. Back to bed for another 6 hours sleep and I was still pretty whacked that evening, and not much better this morning. Another few hours sleep and I managed to drag myself to my massage appointment. That seemed to help, surprisingly, and I am feeling oh so slightly better tonight. Hopefully by tomorrow I can do something more interesting than sleep. In the meantime, all I can say is I should have known better.

Photo credit: Selva

Pent up energy

2007-11-16T16:27:00.000+11:00

I am so full of pent-up energy today. I feel like I could run a marathon. I'm tempted to try, but I know it's an illusion. It's actually not so much physical energy as emotional energy.

I went to a concert last night, which by rights should mean I am absolutely buggered (it's an Australian term, I'm not referring to sodomy) today, but it's had the opposite effect on me. I spent the whole concert on an incredible high (no, I wasn't on anything, just feeling the love). Afterwards I was really tired. Slept like a log. Woke up still feeling tired. Went back to sleep. Work up again and decided I should pull my sorry arse out of bed and go to uni.

Well... By the time I got to uni I was back on a high again, reminiscing about the concert and generally letting the excitement of it seep back into me. I have consequently been so distracted all day that I have got a total of about an hours work done.

You know how they say you learn one thing per day? Well, I usually try to nake sure that thing is relevant and useful to my studies, or is at least something interesting that is in my general professional field (environmental engineering/science/management and related concerns). But today I learned about Matt Bellamy, eccentric (to say the least) frontman and musical genius behind MUSE.

Did you know that he's a complete fruitloop who thinks the US government may be working towards controlling the weather, and believes there is some alien/human conspiracy in our past and the Queen (of England) may be one of the "Lizard people"? No really, it was along those lines. You probably didn't know that, but you probably didn't need to either. But as Terry Pratchett once said "Genius is always allowed some leeway, once the hammer has been pried from its hands and the blood has been cleaned up". And he's definitely a musical genius that one.

Anyway, I'll continue on my merry way through the day and stop distracting you with strange ramblings. But if you're ever after a source of natural energy (fun, if not useful), oh, and some incredibly awesome music, then I can highly recommend attending a MUSE concert. Just don't go in the mosh pit, crazy stuff happens down there.

The electric bike

2007-11-14T16:13:00.000+11:00

If you read the comments on here (seriously, who doesn't, they're the best part!), you may have noticed that I made a comment recently (OK, so it was yesterday and you probably haven't read it) about ordering an electric bike.

That's right, I bought myself an electric kit to make my bike go without me pedalling it. Very exciting for those who like cycling (me!), but are unable to physically managed the effort (me!). In addition, my partner is an avid cyclist, and it will be exciting for us to be able to ride places together, rather than having to take public transport or drive because of my energy limitations.

But wait there's more! I live about 4.5km from the uni I study at. Unfortunately that 4.5km journey involves about 1km of walking for me most days because of the not-wonderful public transport access between our house and the uni. To be honest, I know I'm taking a very inner-city-attitude to this, but I am sick of having to time my journeys to coincide with the bus timetable, or else to walk about 1km from the tram to get to uni. I'm a spontaneous person, not to mention poorly organised, and planning such things as the timing of my daily commute is way too much hassle (ok, a little bit of sarcasm here, but I do find it annoying). The couple of times I have been well enough to ride to uni it has taken me a measly 30 minutes at my slow dawdling, energy-conserving pace. With a decent electric system I think I can expect to average about 20kmph, which means a flying 15 minute trip to uni! In addition to the convenience of leaving when I please, this will add about an extra hour of free time to my day. Wow! Imagine what I could do with that time. Not to mention what I could do with the extra $30 a week I won't have to spend on PT.

So stay posted for some pretty pics and excitedly effusive babling about my newly converted bike when the kit arrives.

Oh, and for those who think that even keeping a bike upright for 4.5km might be too much for them, there is also the option of an electric trike - much more stable and with the added advantage of being ultra-cool.

Benevolent neglect

2007-11-14T15:42:00.000+11:00

The title of this post is probably a pretty good two word summary of the way I've been treating this blog of late, but I realised it's also a good summary of my current health management.

In terms of my health, I've been sitting on a little plateau surveying the landscape for a few months now. The view is middling - I've seen bleaker, but nor is it the most beautiful view I've set eyes on. I've been well enough to keep busy, and busy enough to keep tired. I'm probably not improving aby further partly because I am leading a rather hectic life (I know "healthy" people who do less in a week than I do), but on the other hand I feel I should make the most of my relatively well state to live a full life.

So I have been simply maintaining the status quo in my health management. Not really actively seeking out options for better treatment, but not quitting the things that are working. Not puching the boundaries physically, but trying to keep up the level of activity I have been at lately. I guess in general I haven't been thinking about my health all that much. Which means I haven't been writing about it much either (hence the benevolent (?) neglect of this blog also).

Image source

Dark chocolate? I'll try that!

2007-10-08T15:18:00.000+10:00

Researchers at Hull and York Medical School have conducted a small pilot study which has suggested that moderate consumption of dark chocolate may help alleviate some symptoms of ME/CFS. See here for the BBC report on the study. A number of groups have bee quite critical of the study, with Heather Walker, of Action for ME, making the following scathing comment:
"Wouldn’t it be wonderful if eating chocolate every day could alleviate the symptoms of chronic illness? If it were that easy, there would not be 250,000 people in the UK today whose lives are being been devastated by ME.”
While, I understand her point, and I certainly would like to see more serious research into ME/CFS, I can't help but disagree with the implication that research effort shouldn't be wasted on seemingly simple things with may alleviate symptoms but not lead to an overall cure.
I mean look at cancer, look at AIDS - an awful lot of research effort has been going into finding a cure for those (terminal) conditions for decades now with no real result. Even if significant worldwide funding for CFS research is achieved, it may still be many decades before an underlying cause or, hallelujah, a cure is found. In the meantime I fully support any research into symptom alleviation strategies. And really, this is one hell of a simple strategy!
Charles Shepherd of the ME Association has presented a more balanced view of the research, pointing out the obvious deficiencies of the study (predominantly the small sample size), offering some possible explanations for the positive results observed in the study, and advising ME/CFS sufferers that there is no inherent danger in them trying this for themselves, with the obvious caveat to be aware of the effects of chocolate on your existing medical issues (eg migraines).
Personally I think I'll give the chocolate a go. No, I'm not expecting a miracle cure, but any little things that helps is worth it, and this is something I can try for myself without medical supervision.

Seeing the beauty in the mundane

2007-10-02T16:45:00.000+10:00

Do you do something arty or crafty, or musical, or creative in some other way? Something that lets you express your feeling, hopes, and despairs in a non-verbal way? Does it help you cope with your illness?

Tell you what - I do. Actually I do all sorts of things depending on how the mood takes me and what my latest obsession is - beading, felting, painting... They all come and go, and I'm not terribly good at any of them, but the one constant, and the most therapeutic for me, is photography. I love taking photos. I have a camera the size of a pack of cards which I carry everywhere. I mean that pretty literally too - it lives in my handbag so I nearly always have it on hand. I also have a hulking old SLR. A trusty model created in the late 60s (yes, it's over a decade older than me!) that will probably be still going strong when the latest lot of digitals have all given up the ghost. I just bought 2 new lenses for it, which I am very excited about trying out!

Anyway, enough raving about my gorgeous photographic equipment, the point of all this is why I love photography so much. Because... (drum roll please)... It makes me see the beauty in the world around me. Sometimes, when my illness is getting me down, it can be hard to enjoy the world around me. But when you have a photographers eyes, you're always subconciously looking
for the beauty in things - be it the composition of a certain arrangement of buildings, or the colouring in a garden bed you walk past. And surprisingly there is always beauty to be seen in the most mundane seeming scenes. I love being able to see that.

Like a peewee caught in an eagles beak

2007-09-20T15:05:00.000+10:00

Yesterday as I was walking to the tram stop on my way home from uni I saw an eagle or hwak fly over with a peewee caught in it's beak. I had two thoughts. When I first saw the spectacle, I thought "Wow, what an incredible sight. I wonder if I have time to grab my camera out of my bag and take a photo before the eagle flies goes out of sight behind that building." When I realised that no, I did not have time to get the photo, I reflected on the unusual nature of what I had just seen. This led me to conclude that fate has us all like peewees in an eagles beak sometimes, and sometimes it really feels like that too.

Exercise

2007-09-19T16:44:00.000+10:00

Whoa, OK, this is a scary one for some people. I know lots of us have had bad experiences with attempting too much exercise and having major crashes as a result. So beware, don't rush into exercise if you have CFS.

For me, exercise is one of the last major stumbling blocks associated with my health. I am usually well enough to go to uni everyday, maintain a social life and stay reasonably well (except the occasional low patch when I have to slow down, take the weekend off and rest up). But despite a few attempts, I don't seem to have been able to get back into any form of regular exercise. Crashes invariably ensue.

But lately I have been fairly well, and have been walking a lot (close to 3km some days, not counting walking to lunch and back which probably adds another few hundred metres). I seem to be tolerating this better and better, which has got me thinking I might be ready for another attempt at some more rigorous form of exercise. In my case, spurred on by the latest airing of So You Think You Can Dance, I would like to resume some classes in jazz dance and maybe either contemporary or lyrical dance. I don't know if I will cope or not, but that raises the big question, what is "coping" when it come to exercise and CFS?

It has now been two and a half years since I first started to experience CFS. Since then I haven't done any form of rigorous exercise for any prolonged period. So I'm really out of shape. I've never actually been like this before, so I don't know how that impacts on my response to exercise, even excluding the influences of CFS. Ever since I was 5 I have been involved in some form of exercise which requires at least 6 hours of training per week. At times I have trained about 12 hours per week in gymnastics, which is pretty physically demanding. So I've never been unfit. What should I expect to experience as a physically unfit person attempting hard core exercise for the first time in ages, even if I am "coping" fine on the CFS front?

I gather some muscle soreness, reduced cardio ability while exercising, and some tiredness afterwards are probably in order. But how do I tell this normal response apart from the "Uhoh, crashing is imminent" CFS response, so I can stop before I go to far? Who knows? Not I, that's for sure. If you have some experience, let me know.

Slacker

2007-09-19T16:42:00.000+10:00

Sorry for my slackness of late. The truth is I haven't really been slack at all, but I certainly have been neglecting this blog! In my defence, I have had a bad cold/flu twice since the end of july, so I've been a bit run down health wise at times. The rest of the time I have been trying to make up time lost on my uni project by working working working. In between I have been painting and doing some photography.

CFS Sucks

2007-08-29T12:02:00.000+10:00

I thought for this post I'd quote an email I recently wrote to an old friend I have been out of touch with for about a decade. The email was to bring him up to date with my life since then, a major part of which has obviously been my experience of CFS. So I guess this is a potted history of that experience. This will be old news for some of you, but for others it might help to explain where I am at and why without the need to dredge through the old posts. To give you the background, prior to getting CFS, I was working full time in consulting, cycling recreationally, taking dance classes once a week and generally being a very active and busy person. I have always been the kind to get every cold going around, but had never had a major health scare and led a pretty healthy life.

"
A bit over 2 years ago I had glandular fever, and despite resting lots, and generally looking after myself quite well at the time and in the aftermath, I ended up getting chronic fatigue syndrome. Which sucks. It sucked a lot more back then - for a long time I was only working 3 or 4 days a week, and I would come home and just lie on the couch semi comatose from exhaustion, I had no social life (and my boyfriend had left me to go to Canada), couldn't exercise (it makes things worse, still), and generally it was a bit shit for a while. Then a friend got me into rowing, well coxing to be precise, which didn't require much energy and gave me a social and"sporting" life again. I got a little healthier that summer, I even thought maybe I had kicked the CFS. I started cycling again and was returning to "normal". But last winter I got a lot worse again, which led to me deciding to get out of my job in consulting which wasn't helping in terms of workload and stress. Stress being a major factor in periodically worsening my symptoms.

These days I lead a student life, and if I feel really bad in the morning I just sleep in and do some work from home. I have been so much healthier this year also, which I am beginning to think (hope) is an lasting improvement. Probably this is partly because I have been able to rest when I need, and probably it is also partly independent of the lifestyle change. I'm realising that studying is very hard work also, but it is easier for me to manage my workload (if I get organised), and I find it much more intellectually stimulating in many ways. I also have a great bunch of friends at uni now both in my department and also a few others who are old friends who are also studying.

I haven't returned to exercise yet. Earlier in the year I tried cycling (slowly) to uni a couple of times (about 3km each way). But each time it would precipitate a crash and my health would worsen. These days the best I do it so walk from the tram to uni and back on good days - that's probably about 3km in total, which I figure isn't too bad. I am hoping my tolerance for this will gradually increase and maybe someday I will be able to resume cycling and possibly even my dancing lessons, which I miss a lot.

Lots of people have told me that I also seem much happier this year. I don't think I was unhappy last year, but I certainly had less energy to smile at people and there were times when I was sick that I was pretty down about it. But now - smiles all round.
"

Catching up on birthday celebrations

2007-08-14T20:59:00.000+10:00

It was my birthday about a week ago. Last year I was quite sick during winter, so apart from dinner with my boyfriend, I didn't actually celebrate my birthday. I like birthdays, so that fact got me down a bit. This year I am physically (and according to my friends who keep telling me I'm much happier, emotionally too) much healthier, and boy am I making up for last year.

Firstly, my boyfriend took me out to a very nice restaurant and totally spoiled me on my actual birthday. Afterwards we got yummy hot chocolate on the way home... Mmmm.... Hot chocolate... :)

Then, I had a big (for me) night out with friends last friday. Unlike most of the time when I organise parties, people actually turned up. Lots of people, so many so that we managed to take up the whol upstairs in the bar I chose. It was lovely to be surrounded by friends, some of whom I hadn't seen for about 6 months, or more!

And next weekend, I will be back in my old hometown, visiting my parents and friends there. I'm having more birthday celebrations, including having friends over on the Saturday night. Hopefully with a bit more luck people will actually turn up again, and it will be a lovely night.

In between celebrating my birthday on three separate occasions, I have been busy with field work for my PhD (very physically demanding). I feel like I've been overdoing it, except I don't - I just feel kinda normal tired, not CFS tired. A nice change.

Anyway, just wanted to share with you all the pleasure of being able to lead something of a normal life for a little while and make up for some of the lost time of last winter.

Perfect Job or Nightmare?

2007-07-26T12:49:00.000+10:00

I'm going to put this out there, even though I know it will create controversy and possibly generate hate mail...

Recently, I was staying with a friend who runs a fantasy phone line. Men call in and, well, you get the idea I'm sure... After I witnessed her take a phone call while cooking dinner, we got talking about the job and her staff. One of them has a chronic illness that keeps her housebound and she claims that getting on the phones saved her life by allowing her to connect with the outside world again. My friend suggested it might be the perfect job for people with chronic fatigue syndrome. You can do it anywhere, it takes little energy, is very flexible in terms of other commitments, and you can work as little or as much as you like.

Would you do it? I don't know if I would, I think I'm a bit to shy (or maybe just too much of a prude). But if I was housebound... who knows? Maybe I would feel like my friend's employee, that any social contact was better than none. Even if it was just helping men get their jollies. Maybe I would prefer to have the extra income (social support pensions are pretty abismal in Australia, but at least we have them)? Maybe I'd even like it (I have always been a bit of a power-tripper).

How do you feel about it? Do you like the idea of a job you can do from home that involves talking to people? Would you only do it if you were desperate for money, or do you see it as a liberating job for housebound people? I certainly know people who would think this a morally bankrupt way to make money, supporting the denigration of women and the sex trade in all its vulgarity. I know others who would probably quit their day-jobs if they could make enough of a living off this kind of venture.

Anyway, I'm sure there will be comments, so let them come. Please keep it nice, I'm interested in your opinion, but try to put it articulately.

Update on the foot pads

2007-07-20T13:47:00.000+10:00

Well.. I used them for four days, with no apparent effects (after the first 2 nights I started sleeping properly again). I'm not sure whether to get some more to see if a longer period is required to see any benefits, but I suspect they're just a scam.

In other news, it looks like I might be in for another tiring few weeks, with the boyfriend having another collarbone operation today. So in addition to the usual I will have to do all the shopping, cooking and running around. *sigh*, I know it's selfish, but I'm tired just at the thought of it. On the other hand, I don't have to put up with the pain, the crazy pain meds and the exhaustion of going through an operation, poor boy.

Foot pads

2007-07-13T10:31:00.000+10:00

I think I've lost it. I'm turning to bizarre alternative strategies to aid my recovery... My boyfriend ordered some foot pads from the internet. The principal of these little things is that you stick them to the soles of your feet at night and take them off in the morning, and overnight they help to draw toxins out of your body. I am a natural born skeptic and my inclination is to believe this a scam.

However, in the name of scientific experimentation, I decided to give them a go. So last night, the boy and I plastered one to each foot and went to bed. Well. I can tell you I had the worst nights' sleep I have had in ages! I literally dozed in periods of about half an hour, waking up and rolling over in between.

So... apart from feeling shit from lack of sleep, do I notice any difference this morning? Well, not really. Will I continue with this quackery to see if any further results come from it? Maybe... The boy only bought 10 of these foot pads, so that means 2 nights each and then 1 foot each on the third night I guess... Not a long test period. But I guess I will first see how that goes and then make the call on whether to buy more or not.

Food Allergies and CFS - Is there a link for some people?

2007-07-06T16:04:00.001+10:00

My boyfriend's mum stayed with us for a night recently (she lives in a different city to us). She knows I have CFS and left behind a book on food allergies for me to read. I've never thought myself to suffer fron food allergies. Apart from a disagreement between myself and pepper, I've never had any discernible problems with any particular foods. But this book did kind of get into my head.

It discusses the idea that some people have major or minor allergies to foods, which with constant exposure accumulate to decimate their immune systems. This leaves them feeling, well... like they have CFS, basically. I don't know if I really buy this explanation, but the guy who wrote the book did manage to identify a number of foods he was allergic to, and after eliminating them from his diet he regained his health.

In order to replicate his results, he suggests a rather draconian elmination diet, whereby all foods except potato, rice, cabbage, pears and lamb are cut from the diet. This means you cant cook said foods in anything interesting either - the vegies should be steamed and the meat grilled. Ew. But, after 2 weeks of this, you get to introduce new foods to see how they affect you. Only one food at a time, focussing on common allergenic foods (milk, tomatoes, nuts...). After 30 days of re-introduction you enter a phase of maintenance and re-testing.

Yeah, it struck me as a pretty sucky diet too. On the other hand, it will allow me to do one of two things. Firstly, it could help identify foods that do cause me problems - it is known that people with CFS can be intolerant to certain foods that they weren't previously. Even if this leads to a 10% improvement in my general health that would be significant! Or, instead of this, it could eliminate the possibility of food alergies contributing to my state of ill health, and allow me to focus my energies on other things.

So, with the encouragement of my boyfriend who is also going to do the diet with me (that's devotion!), I am going to give it a shot. Not immediately, but after my birthday, which is in early August (I have a tradition of going out for dinner for my birthday and I'm not about to break with it). I'll keep you all posted.

Uninspired and with tired eyes

2007-07-02T11:00:00.001+10:00

I'm back from galivanting around Western Australia. The trip has left me rejuvenated in many ways, and re-inspired about my studies, but a little less inspired about blogging at the moment. I also ordered new reading glasses the other day, as I have been getting headaches if I read for longer than an hour or so with my current glasses. So this is partly why I am holding off doing a whole lot of blogging right now. I promise once I get my sexy new glasses I will come back inspred and full of all the usual things you see around here.

Audiobooks online

2007-06-11T19:43:00.001+10:00

I know I keep saying I'm disappearing for a couple of weeks, and really I am, but I just found this online and had to pass it on.

Do you like to read? Me, I love it. In fact I love information in all forms, I read novels, I read journal papers as part of my studies (and occasionally as part of my quest for more info on CFS), I read magazines, and I regularly podcast interesting radio programs such as Radio National's In Conversation (podcast feed), and Philosopher's Zone (podcast feed).

Despite my love of reading, sometimes when I am really sick reading is simply impossible, or at the very least an unnecessary drain on my energies. So I love audiobooks. I got hooked as a child, but have since rediscovered by interest when iTunes Store offered me a free copy of Bryce Courtenay's The Power of One. Since then I have devoured Robert Drewe's Grace, Jodi Picoult's Perfect Match, and have on my bookshelf waiting to be "read" Richard Flannagan's Gould's Book of Fish.

Tonight I discovered another great resource for audiobooks (free audiobooks), Librivox. Librivox relies on volunteers to read chapters of public domain novels, and has the intention of making all public domain novels freely available as audiobooks on the web. A noble cause in my mind! Not only useful for those with vision impairment, but also for those for whom reading is sometimes too taxing.

In my mind the one major downfall of this service is that different chapters of a book may be read by different readers. If you're reading simply for information this may not be a problem, but when you're reading for pleasure the aesthetic shock of different narrators wold probably make the novel less enjoyable. There are, however, at least a couple of novels with just one reader, such as Jane Austin's Pride and Prejudice. Personally I like the BBC adaptation of this novel so much I would recommend it over the novel itself (it's very true to the text anyway), but if you want to sample Librivox's seleciton, this could be one to start with.

Sounds of CFS

2007-06-11T16:47:00.000+10:00

Before I skip off to non-blogging land for a couple of weeks I'd like to bring attention to a couple of interesting recent broadcasts about Chronic fatigue syndrome. Now, Australia is not known for being at the forefront of dealing with CFS (our diagnostic and management guidelines will assure you of that), however this week there has been a bit of media attention on this illness. Our national broadcaster, the ABC has aired two radio shows on CFS, both of which are downloadable from their respective program websites.

The first, which I have just finished listening to, was on ABC Melbourne on Tony Delroy's Nightlife, and contained a discussion with Leigh Hatcher (journalist and CFS sufferer), Colin Netherfield (head of ME/CFS association of Australia) and Dr Zeke Pervan (nutritionist specialising in CFS). It was quite interesting, and I found it informative, even as someone who suffers the illness myself and has read quite widely about it. You might too. I am actually going to ask my boyfriend to have a listen, because while he is well appraised of my situation and the symptomatology of my illness, I think it might benefit him to hear about others and to hear specialists talking about management and prognosis for people with the syndrome. You can download it here (although probably for only a few more days, after which if you want it, leave a comment and I will either email it to you or host it online somewhere - but not for a couple of weeks).

The second was on ABC Radio National, on Natasha Mitchell's All In the Mind, a show all about matters related the the brain, mind and thoughts. I have only listened to 5 minutes of it, but it sounds pretty good so far, and Laura also seemed to think it was well worth a listen and contained some thoughts on CFS that she hadn't previously considered. You can download it here, or copy this address into your podcasting software of choice to download it directly. The transcript, which will be available later this week, can also be found here, and includes a rather impressive list of references and further reading. Guests on the program were Dr Johnathon Kerr of the University of London, Dr Simon Hatcher, a psychiatrist with the University of Auckland, Professor Andrew Lloyd, a researcher in CFS at the University of New South Wales, Dr Nicole Phillips, a Melbourne phychiatrist (Don't be worried by all these psychiatrists - Nicole Phillips herself had CFS for 7 years), and Dr Kathy Rowe, a pediatrician at the Royal Melbourne Childrens Hospital.

I do recommend having a look at the references attached to the transcript of this second podcast, there is certainly some interesting stuff there that I will be downloading for a read. In particular I am interested in getting my hands on this one: Educational Strategies for Chronically Ill Students: Chronic Fatigue Syndrome, by Dr Kathy Rowe.

Ciao for now, and happy listening!

Silence on the airwaves

2007-06-09T18:12:00.000+10:00

I apologise in advance for a possible silence of a couple of weeks. I have a field trip for a few days next week, and then the following week I'm going away until the end of June. Unless I get really inspired or terribly bored, don't expect anything much until I get back. Until then, take care all!

Aromatherapy Part 6 - Coughs and colds

2007-06-04T16:48:00.000+10:00

Most of you are probably coming into summer and are not so likely to be experiencing the common cold anytime soon. Nonetheless, store this information up for later date. I had a cold this week, mostly because I caught it from a friend's backpacker friend who friend and I had coffee with. And partly because I had to get up in the middle of the night to take my boyfriend to emergency, thus leaving me tired and run-down.

But did I mope? Well yes, but that's just my way when I have a cold - I like to sook and be looked after. Did I throw up my hands in despair? Nope. Instead I mixed myself up some nice cold-remedy and applied liberally to my chest and throat at frequent intervals. I made two batches, one with a slightly changed the recipe for night-time. It included 2 drops more lavender and less other things.

Cold-Remedy:
2 drops lavender oil
2 drops lemon tea tree oil (or tea tree oil)
1 drop eucalyptus oil
1 teaspoon base oil

Mix all and allow to combine for a while (preferably several hours, but in this case just use it straight away because the sooner you start killing those cold bugs the better).

It seems to have helped. Certainly it has prevented the cold going straight to my chest and causing a horrid icky mucus-y cough that lingers for weeks after the cold.

PS, does anyone else have a horrid reaction to cold tablets? I simply can't take them because they dilate my pupils, space me out, and generally make me look and feel like I've taken some much harder and far more illicit drugs!

Why does it all go wrong at once?

2007-06-01T15:38:00.000+10:00

I was going to swear a lot in this post, but I decided against it. I decided it would make me seem more angry about the situation than I am. I woke up yesterday feeling like someone was sticking knives down my throat. Sure sign of a cold. I had a really busy day ahead - a first aid course all day, and then I had to give my last statics (ew, horrid subject) tute in the evening for my little first year engineering students. I went home in between these engagements, even though they were both at the uni. I sat tiredly on the lounge and ate some curry for dinner. Then I took the car and went back to uni for statics. I had a missed call to return at the end of the tute from a guy my boyfriend plays basketball with. When I spoke to him the reception was poor and for moment I thought he was saying my boy had broken his collarbone again. But no, he was just saying he had been trying to contact him and had finally managed. Thank god.

Sadly this mishearing turned out to be a premonition. I got home went to bed, and woke up again later to see the boy propped up on some pillows on his side of the bed. A lot of pillows in fact. Turns out he'd been slammed on the ground playing basketball and had injured himself in the same area as the original collarbone break. Me, being Little Miss First Aid, wanted to take him to hospital, be he decided against this as he had an appointment there the following day and didn't think his injury serious. So I agreed, telling him if he started to sweat or feel nauseous (signs of shock) to wake me immediately. About half an hour later, he did.

So we upped and went to the Alfred (great trauma ward and where he was last time) at about 1am. Hospitals are much more interesting at 1am on Friday morning than at 9pm on a Tuesday night, I can tell you that! I almost had my bag stolen by a guy off the street who had come in for treatment of an eye infection. We also saw the drama of two pretty young things sitting in wheelchairs because they had overdosed on drugs, probably Ecstasy, and were attended by their worried mothers and friends and were crying, laughing, panicking and hugging according to the waves of their moods. When the boy was confirmed for an x-ray but told it would be a 1-2 hour wait, I eventually went home.

The latest is that his collarbone had not healed at all, and the basketball bash had bent the titanium rod that was holding it in place. This concerned the doctors quite a bit as they wanted to remove it but didn't know if they had anything hard enough to cut it! (they do) So they will cut it, insert a thicker rod and probably graft bone from his hip to his collarbone to encourage it to knit. Apparently that's very painful. All this won't happen until he and I come back from a brief sojourn in Geraldton, so it's about a month away at this stage. Until then, well, until a while after then, I have a broken boy to look after, again.

No Frogs here

2007-05-28T15:23:00.000+10:00

I went looking for frogs a couple of night ago. It's all part of the Frog Census, you see. I used to participate in the South Australian Frog Census when I lived in Adelaide. I haven't participated since I moved to Victoria, but being a frog enthusiast, I thought I should do my bit and get involved. So I signed up. Come census season (April/May) I forgot all about it. Until this weekend, when it occured to me that we were rapidly running out of May, and I hadn't done a recording. You see, the frog census is simple. You don't have to catch the frogs and ask about their age, ethnicity and religion, you simply need to tape their calls and estimate a number of calling individuals at your chosen site. So off to the creek I went, with this in mind, an hour or so after dusk. Couldn't hear a single frog. But I did walk to the creek right near a busy road bridge with a tram crossing too. So I walked down river a little, but still no frogs. None upriver either! Aiyo. It did rather make me wonder about the state of the Merri Creek, given that I always used to hear heaps of frogs calling in the fetid Torrens River back in Adelaide!

CFS is no excuse for laziness!

2007-05-28T10:10:00.001+10:00

This one's for me. I have been getting so little work done lately. And yes, I have had variable health to deal with, but I have also been suffering from a rather large dose of laziness and paralysis. So, to make sure I get some decent work done, I'm going to tell you all what I plan to achieve today, and hopefully the accountability of an audience will make me actually achieve it (or get close).

So what do I want to achieve today? Well, I want to get through reading and reviewing a paper I have been stopping and starting for weeks (yes, literally). That is primo priority for this morning. The I want to add my comments on it into my lit review. That should take a few more minutes on top of the review itself. Then I will head in to Uni and pick up the books my boyfriend wants. Then I want to ring my contact at the EPA to arrange a visit to his office to check out their buoy system for their water quality equipment. Then I want to complete a first draft of 'Things I want my model to do, specifically'. Then I want to speak to my supervisor about changing rooms, and about purchasing water level loggers. After that I will spend the rest of the arvo reading as much as possible of the thesis I have on loan.

Hmm... I think I have discovered the benefit of this process already - getting me to plan my day, thus disallowing time-wasting on account of not knowing what to do next. Perhaps from now on I can just do this for myself on a notepad.

Adendum (warning, expletives): I'd just like to say Shit, I did not get close to completing the things I wanted. However, on the positive side, I probably got closer than usual. I did not see my supervisor, nor ring the EPA, and I didn't complete my first draft of 'Things I want my model to do, specifically'. I did start it though. And I did finish my paper review and get my boyfriend's books. Unfortunately I got distracted by a friend who is here from Italy for a couple of weeks. A "quick coffee" turned into an almost 2 hour discussion of why, despite her having "everything" she needs here in Australia (ie boyfriend, friends, lifestyle) she can't move here now because she's too scared and it's "not the right time". *sigh* you see the problems I'm dealing with - everywhere I turn procrastination opportunities lie.

fear factor

2007-05-26T22:43:00.000+10:00

Anyone with chronic fatigue syndrome knows the effects of stress on their symptoms - at least some of our symptoms will worsen when we're under stress. But what about fear? Fear is obviously a source of stress, but how big a role does it play in perpetuating symptoms of chronic fatigue syndrome?

I know for me, fear is a big one. I spend a lot of time not thinking about what would happen if I was unable to finish my PhD, what will happen if I become unable to work, and a range of other minor fears along the way. One of the predominant ones, that used to rear its ugly head every time I had an impending social engagement is "What if I can't make it through the dinner/concert/presentation, and what if I'm too tired to get home?" That has never happened of course, I've always found just enough energy to get me home before collapsing in an over-tired, nervous mess. But I've come close a few times, and it's very umpleasant, and very discouraging. It got to the point sometime last year, when I was very reticent to accept social invitations, because I knew I would often have to pull out at the last minute, or that I would have to leave early.

Eventually I decided I couldn't live like that. Now I accept invitations if they seem reasonable, and I don't care if I have to pull out later. If I do, I explain kindly to my friend that I am too tired, it's nothing personal, but I simply can't do it this time. And I no longer have any qualms about leaving early or asking for special treatment. I figure if my friends want to see me they won't mind too much. I also find that by dismissing my fears relating to social outings I spend less energy worrying and thus have more to spend enjoying the company and the event.

For example, last night I had plans for dinner with some girlfriends. But yesterday I had an all-day first aid course, which tired me out more than I expected. The tiring-factor of the all-day course was compounded by the fact that the subject matter was emotionally a bit icky, and it kept reminding me of the other week when I saw a cyclist hit by a car and a few months ago when my boyfriend came off his bike and broke his collarbone.

So by the time I left for home, for a brief rest before dinner, I was exhausted. So physically spent that I considered withdrawing from dinner, despite this meaning I would miss a girls night with two close friends, one of whom is visiting briefly from Italy. But I really wanted to go. The plans were to meet at someone's house, decide on a dinner venue and then walk there. I suspected from past experience that it could be a longish walk (700m or s0) for me to undertake given my state. So I rang a friend and asked for special consideration. We agreed that instead of the standing plans, my other friends would meet, decide on a venue and meet me there, thus allowing my to catch a tram or drive directly to the venue. So I got the call, drove to the restaurant, and generally had a lovely evening, made it home at a reasonable hour and didn't over-tax myself.

new layout

2007-05-25T11:40:00.000+10:00

Do you like the new layout? I felt like a change, and something a little more original. Hope it's not too girly to put off the male readers! It is blue though...

Cold

2007-05-21T18:35:00.000+10:00

Man it is cold! Not cold in a crisp sunny-but-freezing way, just cold in a gloomy, slightly damp, boringly cold way that it often is in Melbourne. Brr. And I am underdressed for it today, despite upping my recent usual clothing level with the addition of a jacket to my usual top-half layering of singlet, long sleeved top, and wollen cardi. It so cold my poor fingers are feeling stiff, and my lovely ring from Canada is threatenning to slip from it's place on one of them. Now that would be a sad loss. If you're interested in the weather in my part of the world (you're a little weird), the best to-the-minute info is found at the Melbourne Uni Earthscience site. Given their weather station is only a few buildings from my desk, I rely on this page for the latest on, say, whether I should take an umbrella when I go to get lunch.

Bath before bedtime

2007-05-17T12:13:00.000+10:00

Have you ever heard that a bath before bedtime can help you sleep? I hadn't, until I was looking up "Sleep Hygiene" after a conversation with a specialist this morning about just that. I stumbled across an article about the potential benefits of taking a bath before bedtime. A sleep study took participants and put themeach in room with no time cues. They were told to sleep whenever they felt sleepy, and were not allowed to exercise or undertake any activities that might inhibit sleepiness. Their temperatures were monitored constantly throughout the 3 day course of the study. Subsequent analysis of the temperatures revealed that the participants' body temperatures dropped precipitously about 45 minutes prior to them going to sleep at night. What this suggested to the researchers is that taking a (hot) bath about 90 minutes before your intended bedtime may help you fall asleep. Getting out of the bath will cause your body temperature to fall rapidle, with may induce sleepiness. Personally I love baths, so I don't see any downside to giving this one a shot!

The environment and your health

2007-05-15T14:51:00.000+10:00

"Your father's state of health must be a great drawback. Why does not he try Bath?--Indeed he should. Let me recommend Bath to you. I assure you I have no doubt of its doing Mr. Woodhouse good." - Mrs Elton in Emma by Jane Austen

How much does our environment affect our heath? Are we like sealed zip-lock bags, on whose contents the outside environment has no discernible impact? Or are we more like frogs (like my baby Legs, pictured above), absorbing and aasimilating the influences of our surrounds? Intuitively you would probably tend towards the latter. After all, we breathe in the air around us, we drink the water and bathe in it...

Indeed there is a good deal of evidence that in extreme cases the environment in which we live can have a profound impact on our health. One example of this is the sorry story of the Bay of Minamata in Japan, and the tragic cases of mercury poisonning in residents of the area. Mercury bio-accumulates in shellfish and other aquatic organisms. When eaten by humans, the mercury is not expelled by our bodies and also bioaccumulates in us. Minimata disease victims have toxic levels of mercury in their blood, leading to neurological and physical disorders of a severe kind. This is just one example of the effects of the environment on our health. On a less extreme scale, there is also a known link between ambient air quality and respiratory health. There are links between levels of sanitation and water quality and the prevention of the spread of disease. In fact the work of Dr John Snow in the mid 1800s was seminal in demonstrating this previously unknown link. Of more relevance to today's society, there are a number of negative health effects posited to be associated with human induced climate change, including an increase in infectious disease.

So we know that our environment can have a negative effect on our health. What about beneficial effects of the environment on our health? There's the classic claim, as proposed by Mrs Elton in Emma, for the healing qualities of the hot mineral springs of Bath. In fact, there's even a name for the study of mineral waters and their healing properties - balneology. And there is some evidence for the positive effects of mineral waters on musculoskeletal problems. But beyond this, a simple web search revealed very few claims and even less evidence of the positive health effects of particluar environmental conditions. just one interesting thing caught my eye, a study by the University of Toronto suggesting that small doses of gamma radiation can have a positive effect on health.

So if there's little evidence of positive effects of certain environments on our health, why worry about where we live, work and play? Well, I think we can deduce from the numerous examples of negative health impacts from a degraded environment that a clean environment will at least have neutral health effects. If we can't gain some health benefit from where we live, lets at least try not to incur negative impacts. In this regard, living in the country is preferable to the city in terms of air quality, living in the city if probably preferable to some rural areas in terms of the quality of drinking water (because of higher levels of treatment), living in the country is probably preferable in terms of the quality of natural waters to swim in, and living in a developed country is better than an undeveloped country on most grounds (drinking water, air quality, natural waters, and sanitation). Confusing? Yes, I know, and to make it more so, most of us can't, or don't want to change where we live?

Well, you can always support measures to protect your environment from further degradation. For instance simple things like buying products with less packaging, using public transport rather than your car (where this is possible for you!), reusing water to reduce your consumption, not littering, and turning of your lights an appliances when not in use. Oh, and don't forget my fave energy-saver of the moment - the low wattage globe.

So here's to clean water, fresh air, and the prevention of climate change!

Aromatherapy Part 5 - Finding a supplier

2007-05-11T10:54:00.000+10:00

Ok, this is easier said than done. Additionally it is really hard for me to identify reputable suppliers in the US and UK (where most of you lovely people are from), from here in Australia.

I have previously given tips, like looking for "100% pure essential oil" and a botanical name on the product label. This is a really important start to finding a good brand. Also, trust your nose, even if you've never smelled a real essential oil before. If they have a tester bottle on display, open it up and have a sniff. Does it smell "real"? Choose an oil from a plant you know the smell of. If the oil doesn't smell like the plant (ie fake lavender often smells more perfumy than real lavender oil), it's probably not the real thing. Also, check the price-point. Anything under $10-15 is probably a fragrant oil rather than an essential oil. Essential oils are labour intensive in the making, and the pricing reflects this.

So, in an effort to help you on your first steps, I have located an online shop that I know for a fact is reputable and sells pure essential oils. Jurlique - another Australia aromatherapy company, exporting to the world - Go Aussie. They also have stores around the world, for your shopping convenience. Only one drawback - they are expensive. Lavender oil from the online shop costs US$20. That's a lot for lavender oil (i use it as a measuring stick for how expensive a brand is). I can buy it here in Australia for about $12 a bottle, so I would expect to be able to find it in US stores for around US$10-12. I know from experience that even in Australia Jurlique is expensive. So you've been warned. But if you're keen to get started on aromatherapy, and you just can't find good essential oils anywhere, at least you now have somewhere to get them. You can also get Jurlique essential oils from Strawberrynet - a cosmetics company that discounts heavily and runs a good online shop (I've used them). Search by brand, then you will find the oils under Night Care (strange but true). They may be a teensy bit cheaper here.

Happy hunting peeps!

Lomo love

2007-05-10T17:50:00.000+10:00

I love my new toy, I just had to share it. It has nothing to do with CFS, except that photography can be a relatively passive pursuit, as long as you can get to somewhere interesting looking without too much effort.

It's a Lomo fisheye camera. Mine is a white one. Not the most practical seeing I intend to tote it around with me everywhere, but pretty nonetheless. And the pictures, Oh the pictures... The first film (yes, it's a film camera!) was a write-off, terrible shots. The second film though, oh pretty pretty...

Ok, the rest is the pictures, worth a thousand word, or so we're told.

The mind body connection and yoga

2007-05-09T16:37:00.000+10:00

Don't worry, I'm not going to try to convince you that with a little bit of cognitive behaviour therapy you'll be feeling a-okay again, instead I'm talking about the benefits of such things as yoga, meditation, and other practices that work on the mind-body connection.
What I'm asking is this: Do you find that practices that involve relaxing the body and or mind provide you with some temporary relief?

I'm interested in your answer, because mine is: I do!

These practices include a whole range of things: simple stretching, tai chi, yoga, qi qung (maybe have spelled it wrong, it's a breathing exercise), meditation, focussed relaxation, other breathing exercises... you get the drift. For me, the practice of choice is yoga. This traces back to my pre-CFS days, when I first started yoga at uni. A friend and I took lunchtime classes - the effects were dramatic, we would float into our subsequent lecture on little clouds, minds clear and focussed, moods light, and bodies relaxed. I'm sure our other friends thought the "yoga" was a front for an illicit love affair, such was the profound change in both of us after each session.

When I moved interstate, I stopped practicing yoga for a while, but eventaully found a lovely yoga studio that is run by people who see yoga as a philosophy, not a way to get fit (this is a not-so-disguised jibe at gyms and fitness centres that run "yoga" classes which miss the point completely). After having glandular fever and subsequently getting CFS, I eventually resumed yoga when I was once again physically well enough (this is the catch 22 with yoga, even relatively gentle yoga can be fairly demanding). My attendance was rather patchy, but I always felt I benefited from a session.

During the last few months, a friend and I have been religiously attending yoga once a week. I can't say it has affected an onoging change in my level of ability physical well-being, but it certainly has temporary effects. Frequently (read "most weeks") I drag myself there out of a sense of duty and for the chance to have my weekly catch up with my friend. Invariably, I leave feeling lively, mentally and physically more alert and capable than I was when I arrived. I should point out that this is not usually case with exercise of any other form, which tends to leave me sluggish and mentally as well as physically tired.

For the next week or so, I am considering starting each morning with a brief yoga session, consiting of a few repetitions of the sun-salutation (for those who know yoga), to see if this has an effect on my day. I started today. My boyfriend got up when I was hlafway through and gave me a funny look. But he already know's I'm a little strange, so that didn't bother either of us much. I'll report back on the effects (if any).

In the meantime, I would welcome any comments on your experience with mind-body work and any recommendations of practices to try (I'm currently thinking tai chi might be good).

The Therapeutic Value of a Weekend Away

2007-05-04T17:07:00.000+10:00

I'm going away for the weekend. I realise it's a luxury that some people who have CFS do not have. But for those of us who do, it can be a simple pleasure, and therapeutic to boot. There's something freeing about leaving your habitual surroundings, even for a few days. The usual worries and cares melt away and you feel younger somehow. A weekend away can be tiring too, you tend to keep busier when on holiday than when at home. But as long as you remember to slow down, observe your usual constraints, and smell the roses as well, it can be a relaxing, renewing experience.

I particularly love sojurns to the beach, although this weekend I am headed to the hills and forests, not the sea. I find the sea air calming, and who can resist the profoundly relaxing feel of sand between your toes. I have from considered opening a day spa that offers this experience, as I honnestly know of nothing else that has so instantly and completely removes the tension from your body and releases the mind.

Hope you all have a lovely weekend, I suspect I will. ;)

Sometimes I'm not ok. But that's ok.

2007-04-27T10:51:00.000+10:00

Aromatherapy Part 4 - Lavender, the joys

2007-04-22T20:29:00.000+10:00

I love lavender oil. Who doesn't? Good, pure lavender oil smells beautiful and delicate, and unbeknown to many people, has a wealth of healing properties.

The above picture doesn't show it too well (this image show it better), but my current bottle of lavender oil is looking a little worse for the wear. This is because it has spent many a night being carried around in our fire-twirling bag. Why? Well, fire-twirling unavoidably involves the occasional minor burn, often from the metal fitting on your staff or poi. Turn out that one of lavender's uses is for treating burns. In fact, I don't know anything better for minor burns (ie small areas of skin, where the burn is superficial and has not broken the skin - if the burn is serious you must see a medical professional). Lavender is mild enough to use neat, so just dab a few drops onto the burn, feel the sting dissipate (to some extent!), and watch the blister heal up nicely. No more of those blisters that last for days before tearing open and causing more pain, lavender will dry the blister out and heal it quickly. Seriously, try it.

Are you prone to mosquito bites? I am - I am to a mosquito what a juicy steak is to a meat-loving human. I hate mosquito bites, they drive me absolutely mental, and I hate calamine lotion - all those horrid pale pink dots. And I don't know of anything else that is truly effective against mosquito bites, except lavender oil. Again, just a drop or two neat on the bite will quickly relieve the itchiness. Repeat this a few times over an hour or so and you should pretty much eliminate any itchiness in the bite at all. This also works for other insect bites. I once got bitten by a bull ant while camping. These sting a lot. And the bring up a bit red ugly welt on the sting site that lasts for weeks (in my case) during which time touching it brings back a fierce itching-stinging sensation. Fortunately I had lavender oil in my camping supplies, so I applied a little of that while alleviated the pain enough for me to function like a normal human for the remainder of the camping trip, although I did need to reapply several times a day when the itching started again.

Coughs, colds and general illnesses are also relieved by lavender oil. In these cases vaporising the oil in an electric oil-burner (warmer really) or a ceramic burner. If using an electric burner, add half a dozen or so drops and keep it topped up as the oil evaporates. If using a ceramic burner, add a tablespoon or two of water and float half-a dozen drops of oil on the water. Again, keep the oil and the water topped up. Oh, and don't leave the room while the candle's alight.

The aforementioned method can also be used for treating headaches, although it is also possible to rub a little oil into the temples.

I have previously mentioned the wonders of lavender in dealing with insomnia, so I won't go into that here.

Hmm. I'm sure there's more, but you are no doubt overwhelmed by all the information I have just provided, so I won't flood your (probably brain-fog affected) minds with any more for the moment.

Aromatherapy Part 3 - Sleep

2007-04-22T20:05:00.000+10:00

Hi All,

This time as promised, it is all about sleep. Or rather the tricky issue of avoiding a lack of sleep.

As I have mentioned a few times on Laura's blog (for those who read it)I have a wonderful sleepy oil that both my partner and I use when sleep is less than forthcoming. I usually buy it from a beaut little Aussie company called Auroma. Sadly I don't think they ship overseas, and I know most of you live rather a long way from Oz. Luckily for you, I have a few alternatives. I will present you with two recipes for my own brand of Sleepy Oil - the deluxe version with all the yummy oils that may coax you to sleep, and the paupers version for those who don't want to invest in a whole lot of admittedly quite expensive oils. I also strongly recommend investing in some quality chamomile tea, as it has a lovely calming and sedating effect that will help being sleep on. I believe Lavender tea will have a similar effect, although I haven't yet been able to lay my hands on some to try.

Just before we get to the recipes, you probably want to know what to do with them once you've concocted them. Well, in this case I am strongly influenced by the "it's the middle of the night, don't make it too difficult" concept, which dictates that any sleep aid should be easy, and should not require you to leave your bed. So, with that in mind I think the best way to use these blends is to put a drop or two (and I really mean 1 or 2 drops. I rarely use more than one, because you don't want the smell to be too overpowering) on a tissue and, depending on the sensitivity of your nose, to put that tissue either next to your pillow, or at some distance away - perhaps on your bedside table. Let the gentle (if they're not seeming gentle the tissue is too close) odours send you to dreamyland. Ok, now onto the recipes:

Ellie's Sleepy Oil - The whiz-bang-deluxe version:
You need: 1 small dark-glass bottle or jar; essential oils.

Add:
38 drops lavender oil
20 drops sweet orange oil
10 drops sandalwood oil
18 drops ylang-ylang oil
18 drops marjoram oil
6 drops chamomile oil
6 drops neroli oil

This will make about 11mL of oil, so if you have a bottle smaller than that, you might want to do a half quantity, or to reduce the amount of some oils. As I have said previously, if you don't like the smell of a particular oil, leave it out. If you don't have a particular oil, again leave it out. It's not rocket science, and it's not going to spoil your blend. If you don't want to invest in a lot of oils, the following is for you, it only relies on a few widely used oils.

Ellie's Sleepy Oil - the paupers version:
You need: 1 small dark-glass bottle or jar; essential oils.

Add:
60 drops lavender oil
30 drops sweet orange oil
20 drops sandalwood oil

If you only want to buy just one essential oil (ever), make it lavender oil. It really is somewhat of a cure-all, and a few drops on a tissue will go a long way to helping you sleep. It is great for lots of other things too, which I may make the subject of an entry in the not to distant future. In the meantime, sweet dreams.

Aromatherapy Part 2 - When you're feeling low

2007-04-20T16:08:00.000+10:00

I said we would look at sleep first up, but I lied (sorry never claimed to be an angel). Instead, we're going to look at when you're feeling low. I'm not going to call it depression, because if you think you are actually depressed, you should go and seek professional help. But we all have our low times, esspecially dealing with chronic illness, and I'm certainly no exception. The last few days, for no particular reason, I have been feeling rather sorry for myself and quite sad and mopey. Not my usual state of being, but what can you do? Staying in bed and crying isn't really an option, so here are a few tips on how to use aromaptherapy for those times you're feeling a bit down.

Bergamot oil
Bergamot oil is one of my favourites. It's very refreshing, and a little citrusy. It's also great for when you're mood is low, it helps to perk you up and stabilise your emotions. If you're at home, you can pop it in the oil burner and let the scent fill up the room (it also mizes nicely with other citrus oils like orange, lemon and lime, and with geranium). However, if you're obliged to leave the house and face the world regardless of your mood, I recommend the old "drops-on-a-hanky" trick. This is a great one for any oil you want to take with you. Just fold up a hanky or tissue, put a few drops inside a fold, and put it in your pocket. I have done this with bergamot today, and I catch a waft of it from my pocket every so often and it is having a wonderful effect (I didn't even burst into tears when I read about Australia's biggest lollypop burning down!). If you need a stronger whiff at times, just whip the hanky from your pocket and take a bit of a sniff.
As with other essential oils, bergamot can also be used in a massage or bath, but be a little careful, as it will make your skin photosensitive (ie you will get sunburnt easily), so save the massage and bath for winter.
Incidentally, did you know that bergamot is the flavouring added to Earl Grey Tea? It is what gives it the distinctive smell (which my Mum describes as "like dirty socks", but I think is rather more pleasant than that). So this means stopping for a tea break (with Earl Grey as your chosen variety) can also help to life your mood.

Geranium
Geranium has a lovely subtle floral smell (how whould have thunk it looking at those ugly geranium flowers?). Geranium has a balancing effect. This means if you're a bit to hyper, it will bring you back to earth, and if you feel like curling up in bed for a week, it will lend you that little extra to help you get out from beneath the blankets. It is a great oil for baths, although it can of course be used in all of the same ways as bergamot.

Chamomile
I tend to reserve chamomile for when I want to get sleepy (more on this soon), but because of its lovely calming effect it can be a really beneficial oil for helping with low mood. You've all heard of chamomile tea I'm sure. well, for my money this is the best way to get some chamomile into your life, as it is a very expensive oil to purchase. If you have the time, find a health food shop that sells dried chamomile flowers rather than pre-packed teabags, as they definitely have a bit more oomph to them. If you do decide to purchase the oil, you will find it is usually sold as a 2.5% (or similar) dilution in a carrier oil, rather than a pur essential oil. Expect to see this on the bottle, it does not mean it's not real chamomile oil. It is also sold either as Roman or German chamomile. I don't honnestly know enough about the subtleties of aromatherapy to tell you the difference, but they will both have a similar effect.

Next time (this time I'm not lying, there will be no more putting it off), sleep.

How did you get here?

2007-04-18T16:15:00.000+10:00

Sometimes I think I am talking about the wrong things on here. More people seem to find my blog by searching for "celebrity doubles" or "salvital ingredients" than "CFS"! Anyway, looks like google's not going to help me out, I'll just have to rely on word of mouth to spread the message of what can be found here at Life, Not Just Existence.

Nonetheless, I was touched today by a google search that someone ran the other day that led them to my blog. The searched terms used by this lost soul were "muscles aches weakness no reason". Oh, you poor thing, I do hope you find a reason! And I really hope it's just that you've been overdoing the exercise a bit. I hope it's not chronic fatigue syndrome. And to the person who also recently stumbled here with a search for "muscle pain tired lethargic wind", same goes for you. But if it does turn out to be CFS, I do hope that being here let you know that at least you're not alone, and that there are people out there who have experienced the same things you have and can lend you their experience at this frightening time.

Aromatherapy in CFS management - Part 1

2007-04-16T18:25:00.000+10:00

As Laura (see her blog, down there on the left - my in-post links aren't working), is having a bit of trouble sleeping, and is interested in adding aromatherapy to her kit of management strategies, I thought I'd share a bit of my experience with this delicate healing art. This, Part One, will focus on the basics, to be followed swiftly (I promise) by Part Two - sleeping. But first a little background. I initially became interested in aromatherapy about 8 or 9 years ago when my mum was given an book on it which also came with 4 little sample bottles of essential oils. They smelled a bit exotic and the book looked seductive with it's instructions on aromatic baths and healing massage. When I started my final year of high school an aunt gave me an oil burner and some oils (orange I think, one of my faves) to assist my study and relaxation. I soon bought a book or two on the subject, and increased my little stash of oils, and I was on my way. Subsequently another aunt started to study to become an aromatherapist (she is now practising), since which time she has been an invaluable source of information on the topic, remedies and general advice. So I suppose you could say that for a layman, I know a fair bit on the subject, however I am not a trained aromatherapist or a medical practitioner, so please bear this in mind this when reading my words.

So, first thing first, and introduction to aromatherapy, and some things to think about when using it. I won't give you a history of aromatherapy, mostly because I don't purport to know much about it and that's probably not why you're reading this anyway.

Essential oils
When you use oils for aromatherapy, their therapeutic properties rely on their chemical makeup as much as their smell. So it's important to buy oils that are distilled or otherwise extracted from the right plants, and not just manufactured to smell right. To this end, you need to ensure that the oil you buy is has a label stating "100% pure essential oil). Often real essential oils will also have the botanical name of the plant from which the oil is extracted (eg Citrus sinensis for Sweet Orange oil). These are both good signs you are getting the real deal, and not something designed for making your potpourri smell nice. Finding a reputable shop that stock essential oils helps in figuring out which brands are good, and you can sometimes find essential oils in pharmacies (drug stores).

Dilution
Essential oils (with a very few exceptions) should never be used "neat" on the skin. The term "neat" means undiluted. They will irritate the skin if used neat, so they should always be diluted with a suitable carrier oil if they are to be used on the skin, for example in massage. Suitable carrier oils include a whole range of plant and nut oils, with a preference for those with a mild or no odour (but yes, if you're desperate you can even use olive oil from the kitchen!). Jojoba oil is considered the bees knees of carrier oils, with other good ones including sweet almond oil, macadamia, and grape seed.
Oils should generally be diluted to about 2-3% dilution for use on the body. Quite conveniently, a teaspoon is approximately 100 drops, so you can just add 2 drops of your chosen essential oil(s) for each teaspoon of your carrier oil. If you're using essential oils in the bath, they can be used neat, just make sure you drop them into the water near the tap while it is still running, so they disperse well. Alternatively you can dilute them in a few teaspoons of vodka or milk, either of which will help them disperse in the bath water.
The only oil I frequently use neat on skin in lavender, which is great to spot onto insect bites for nearly instant relief of itching and pain.

Types of Use
There are a number of ways you can use essential oils, inlcuding massage, baths, inhalations and vapourisers. Which method you use will depend on what you are trying to achieve and your personal preference. For instance inhalations are great for respiratory problems, but a relaxing bath can be used to allow the oils to absorb through the skin and be inhaled at the same time. Oil vapourisers are great from dispersing healing aromas throughout a room, and for this I would definitely recommend investing in an electic vapouriser that gently heats the oils and disperses them, although you can also use a candle under a bowl of water in which some oil is floated, just make sure your burner is ceramic, not metal (too much heat!) and never leave it going when you're not in the room. The amount of oil you use for methods will also vary, for instance you may use 2-3 teaspoons of carrier oil with 4-6 drops of essential oil of a massage over a large portion of the body. A bath usually requires just 2-3 drops of oil, inhalations require varying amounts, and in a vapouriser you will put in several drops of essential oil initially, and keep it topped up as that amount depletes.

Personal Preference
Various oils have various characteristics. Some stimulate the body, some relax it. Some help to build up the immune system. Some have a detoxifying effect. Lots of oils have similar characteristics, and they can often be used somewhat interchangeably to acheive similar results. So if you find an oil mentioned in a "recipe" for a remedy, but you really hate the smell of it, don't use it, or replace it with a similar oil that has the same qualities (er, more on this later). It is important that you like the smell of the oil or blend you use, as it will work best with your body that way.

Well, that all for the moment folks, and that should be enough for me to launch into a little series about what aromatherapy can be used for in helping with CFS problems. If you have any requests for issues you'd like me to address, drop me a line in a comment and I'll do my best to oblige! I think the first topic will be sleep. :)

Happy easter all!

2007-04-10T16:44:00.000+10:00

Hey friendly peeps,

Happy easter to you all! Sorry this message is just a little late (even in places that are a bit behind Aussie time), I'm not just a selfish person who doesn't want to share her easter eggs, I am just forgetful of the fact that others enjoy these holidays too. Hope you've all had a good one and been able to spend it having happy times with you choice of family or friends.

*hugs*

Why nana's have a seven day pill box

2007-03-29T09:15:00.000+10:00

I never understood why nana's have seven day pill boxes. Now I do.

I have recently had a change to my regular medication so that instead of taking one 300mg pill in the morning and one at night, I take one in the morning and a 150mg pill at night. So I have two different boxes of pills of different strengths of the same medication. Now, when this first occured, I took the "safe not sorry" approach and labelled one box "Morning" and one "Night". Boy am I glad I did that. If I had a dollar for the number of times I have needed those labels to help me decide which pill to take, I would be a moderately rich woman (it hasn't been that long since I started this new regime).

I have even considered buying one of said seven day pill boxes, so that I can be sure I don't double dose or forget to take my medication (I also take some nutritional supplements which add to the confusion). I can usually dredge enough information from my mind to remember whether or not I have taken the necessary tablets an hour ago, but sometimes it's a struggle!

Telling people - I'm trying it!

2007-03-23T14:50:00.000+11:00

I made my first concious effort at telling someone about CFS yesterday evening. The day before I rode my bike to uni (lucky girl, I've been able to do this occasionally lately, and long as I ride slowly), and on the way out of the building I saw another psotgrad student and said Hi. So yesterday afternoon when we were both on our way to a seminar, he asked if I rode to uni everyday. So, rather than just saying "No", I explainned why not. I was pleasantly surprised at his response. He was genuinely interested in my experience and how having CFS affected me in an everyday context. He mentionned a friend who had also had glandular fever and takena long time to recover and was generally sympathetic (in that nice, non-condescending, non-pitying way), curious and didn't make assumptions.

Well! I was encouraged by this! I will continue on the path of telling and let you know how I go.

And no, I still haven't explained to my new friend who wanted me to dance, but he's high up on the list of people to tell in the near future.

"I'll see you there and we'll have a dance."

2007-03-08T13:31:00.000+11:00

I recently received an email about a music festival from a friendly acquaintance of mine with that comment in it.My response? In my head: "Oh really... Hmm, maybe not. Er, there's something I haven't told you about me..." (I'm well at the moment, well enough to attend an all day music festival, but not well enough to dance). In my email: Well I basically ignored the comment and went on with replying to the rest of the email. I don't know the emailer terribly well, and although I would be quite happy to tell him all about my problems, he probably doesn't need or want to know.

I also have an underlying fear that people will judge me for having chronic fatigue syndrome. Why? Well, even though I am a fairly empathetic person (I think) I would have trouble believing such a condition existed, or the seriousness of its effects, if I hadn't experienced it myself. In fact I can say this for sure, because I did indeed have a friend with CFS a few years ago. She has since discovered the underlying problem was coeliac disease and she is doing much better now. But at the time, I believed she had CFS, but I really had no concept of how this affected her. She would tell me storied of getting up in the morning and then not being well enough to make it to her Uni lecture (she lived on campus). And on one level I would think "That's terrible", but on another (driven by the cynical, hard part of me) I would think "Well how hard is it to walk across campus to a lecture, sit for an hour listening, and walk back?". Actually, it can be hard. Real hard, as I now know. And when she would miss social events, I would understand, but the cynical part of me would still accuse her of selfishness. And yeah, she was being selfish, but she needed to me, as I often need to be these days.

As a result of these experiences I fully expect a similar, or less sympathetic response from people who I tell about my condition. Especially people I meet now, who didn't know me "before". Who didn't know the girl who would run up 4 flights of stairs because she couldn't be bothered waiting for the lift, who would sometimes bounce up and down on the spot, just because she felt a need to release some pent up energy. People who knew me before can at least see the change, and are more likely to believe there must be something serious behind it. People who meet me now just see a fairly normal, but non-energetic, perhaps slightly lazy, person. How are they going to convince themselves that this is a result of a serious illness? They're not. Well I don't think they are anyway.

This is the major reason why I am so reluctant to tell people I have CFS. Just for starters, if they got it into their head that everyone with CFS was like me, they'd seriously underestimate the effects of CFS on lots and lots of people. And that's assuming they were even convinced there was something wrong with me in the first place.

Working with CFS

2007-03-01T17:21:00.000+11:00

This post is about my experiences to date with maintaining a career while coping with CFS. Obviously it's not going to interest everyone - I am very lucky to only have quite mild CFS and for many people, continuing in the workforce is just not an option. But for me it has been - with some important concessions from my employer and some actions on my part.

An understanding employer
I must also say upfront, that I have been lucky not only in having an understanding employer, but also a two bosses who have direct experience with CFS. One of my bosses has seen me go through glandular fever (mono), and my slow recovery, and then progression (regression?) into having CFS as well. My other boss joined the company after I had had CFS for about 6 months, but she had previously had another employee who had CFS so she knew what I was working with.

Honesty
My strategy for working with CFS begins with honesty. I am honest with my employer, and am open about my condition and how it affects me (much as this is against my natural instinct to keep it to myself). I am honest with my colleagues about why I work part-time, and why I take the occasional sick day when I have no obvious illness. I am honest with clients to the extent of telling them I work part-time for health reasons. I don't go into details unless my illness has directly affected my work on a particular job. And most importantly I am honest with myself. and accept when I need to take time off or reduce my working hours. I have also recently started in a new work situation, and have taken the time to explain to my supervisor that I have CFS and how this affects my work and general capabilities.

Negotiation
So you've told your employer about CFS and taken the time to explain how it affects your capabilities in the workplace. Hopefully your employer is understanding and ready to discuss how they can accommodate your limitations in order to maximise your capabilities. If not, speak to the doctor who helps you manage your condition and ask them to write a short explanation note to your boss and use this to help you put your case.
You're going to need to negotiate. For the first half of last year, I was working full-time. Prior to that (after having glandular fever) the best I was doing was 4 days per week. I resumed full-time work when I felt well enough to cope with it. However when it became apparent that I could no longer work full-time, after a few tough weeks and some days off work due to exhaustion, I admitted to myself that I wasn't dealing with full-time work anymore and I spoke to my boss about reducing my working hours again. My boss actually said "I was wondering when you were going to come and see me about that".
So I can't say I've had to do much hard negotiating, but you may have to. Be prepared to put your case rationally, give examples of why your need what you need, and explain how this will help you to perform at your best. When I started in my new work situation recently, The question of what type of computer I would be given arose. I stated my case for a laptop, explaining that it would give me the versatility to work from home when I wasn't well enough to come to work, and my supervisor agreed that it would be the sensible way to go.

Ethical conduct
Another tenet of my strategy is to behave ethically. I recognise that my employer is being accommodating of my needs, so I don't abuse this but taking sick days when I'm not sick, or leaving early when I don't need to, and other such things. I also try to be very realistic about my abilities. I work(ed) in consulting, so a wide variety of projects come and go, and as an individual I would be asked to contribute to different projects in various ways. I am very careful about what I commit myself to. I don't agree to undertake tasks that I don't honestly think I will be able to handle. This can take some willpower, as it takes quite a lot of strength to put your foot down and say "no I can't help you because I can't guarantee that I will be able to complete that task". In the end it is important to do this to maintain your health and also your professional credibility - never promise more than you can deliver. Your employer will be more willing to accommodate your needs if they have faith that you can still deliver what you say you will.

Put your health before your work
My illness has made me take a very self-centred approach to working which isn't necessarily compatible with today's working environment. Long hours and extreme commitment are often expected of us, but I have resisted falling in with this culture, and have taken the attitude that I work to live and that my health is more important than my work. This can be hard for your employer to understand, but the honesty helps. It can also be hard personally - my career is very important to me and I love my work. But it is important and if you fail to take this approach your health can suffer and it doesn't take much to see that this will be more detrimental to your work than an attitude of "health before work".

Consider a change
Hopefully with a few adjustments you can continue to work in the same role as you had previously, if only on a part-time basis. However, it might also be worthwhile considering a change of job, or a change of career. For a while I was seriously thinking of getting out of my field altogether, and finding a less demanding role, or one more suited to part-time work. In the end I opted to stay in the same field, but to change the type of work I did. I mentioned earlier that I had a recent change of work situation, and by that I was referring to my decision to leave consulting engineering and to study for a PhD. I was lucky to receive a scholarship to support me in my studies, so I left my job and have returned to university. While in some ways a PhD is a mammoth undertaking, it does allow a much greater flexibility of work hours and workplace than any other kind of work. It also affords a different perspective on time management - one big goal with some milestones along the way rather than a daily rush to get things done before a deadline that might be today, tomorrow, or next week. So I've taken the plunge and so far I have never felt better in the time I've had CFS.

So... Those are my pearls of wisdom, garnered through trial and error, about working with CFS. I hope they're worth something to some of you trying to do the same.

I feel like a fraud...

2007-02-19T10:56:00.000+11:00

That is, I feel good.

I've been feeling good for a while now. I've been run off my feet with house-hunting, moving, and studying. It's bee hot and muggy weather, which is tiring in itself. I've had funerals to go to, early mornings, busy days, and even a late night or two. And with the exception of 2 days I spent in bed sleeping a few weeks ago, none of it has made me crash. And far from feeling like a crash is imminent, I rather feel that I'm on the improve still. People keep telling me how well I look (not that this is really indicative, but it is certianly unusual), and it's not just because I'm doing my best at keeping up appearances.

Anyway, this is all very good for me, and I certainly hope things continue this way. I'm not saying everything's hunky dory, I am still quite tired, and I still wake up tired, which is not something normal people do. But on the whole I'm pretty happy with my current state. What can I say, but that I hope you're in a good way too. And if you're not, let me know and I'll send some good-health vibes out on the airwaves for you. I'm feeling just about strong enough to do that. :)

I found my glasses!

2007-01-25T10:30:00.000+11:00

Yay! This morning I was reading a journal paper and it was a real struggle (not the paper, it was very well written, just the print). So, after whingeing to my housemate about it, I went and had one more thorough look in a place I thought they would be. I remembered bringing them home from work on my last day before Christmas holidays, and then not using them during the hols. So I figured that despite having already looked amongst my work stuff my glasses must be there and I must have missed them previously. After a thorough scout I discovered them hiding under some of my boyrfriend's stuff that was in the same area as all my work things.

Life is so much easier with your reading glasses!

PS, I promise there are more serious posts on the way, I am working on a couple but the inspiration hasn't been flowing of late and my energy is consumed with house-hunting. But don't worry, I'll be back with a vengeance soon!

They say that everyone has a double...

2007-01-22T10:48:00.000+11:00

... Well I think I've found mine. She doesn't look exactly like me, her face is wider, and unfortunately (for me) she has muscles and tone where I have none. She's also a little taller (5cm / 2in), or so I am led to believe. And she's younger - about 5 years younger, althoug you probably wouldn't pick it (or maybe I'm just delusional).

There's a big fuss in the Australian media at the moment about doubles, because there's some Melbourne girl who is Kate Hudson's official body double (man, would I like to be her!). There's actually an ad on TV at the moment for an upcoming current affairs show about celebrity doubles. Though I must say the girl on the ad who is touted as Scarlett Johansen's double doesn't look much like her to me.

Anyway, back to my double - who looks considerably more like me than the aforementioned Scarlett Johansen lookalike does to Scarlett, I might add. No, I didn't meet her in the street, I saw her on TV also - you could say she's a celebrity. Although she's not really. Well, rather a friend of mine saw her on TV, and she told me about her. So I kept and eye out and spotted her the following day. My initial reaction was "she doesn't look like me", followed (about 5 seconds later) by "oh... i suppose..." and then "actually, that's quite scary, she looks a lot like me". Since then I have become mesmerised. It's very strange seeing someone who looks just like you on TV. Someone who isn't you, and is doing things you don't do, but who you would possible mistake for you, if you weren't infact you.

I told one of my sisters about her. She didn't think the likeness was close enough to be scary, although she has only seen still photos, which show up the differences more than the similarities. She actually thought she looked more like I did when I was little, because I had a wider face then.

My double is a professional tennis player - Lucie Safarova. Personally I can't play tennis (I have a lot of difficulty extending my tenuous hand-eye coordination down the length of the racquet), so I find it quite interesting to see what I would look like if I could play it, and rather well at that. She's currently playing in the Australian Open in Melbourne, so I'm considering testing the depth of the likeness by throwing on some sporty attire and a nike cap, and heading down to near Rod Laver Arena to see if anyone asks for an autograph. And she just beat 2nd seeded Amelie Mauresmo, so I'm very excited to see how she progresses through the tournament - I can tell you who I'll be cheering for!

Trauma is tiring and not nearly as much fun as new beginnings.

2007-01-10T21:11:00.000+11:00

I had a very exciting night last night. I went to a barbeque with friends by the Yarra River in the city of Melbourne. That in itself was quite uneventful, but the toilets wera a way off, so my boyfriend and a friend decided to cycle to them rather than walking. Sensible idea perhaps. But they did take rather a long time and we got to wondering where they were. Then our friend called, demanding that I walk down to where they were. So, muttering about boys and their games, I strolled in that direction.

It was on dusk, and I got about halfway to them before I saw the ambulance and my boy lying on the bike track. Then I started to run. He was lying in a pool of his own blood looking dazed and confused and moaning about how sore his shoulder was. The ambulance guys cut his shirt off him, which he later called one of them a "bitch" for doing (it was a lovely CK linen shirt that he got at a seconds sale a while ago), and bundled him onto a spne board and then a gurney. They first checked his feeling in his limbs (a proxy for checking for spinal injury I guess), which were fortunately fine.

The ambulance ride to hospital was uneventful (no sirens :( sadly), but I was quite concerned by the fact my boy kept repeating the same questions and comments, had no idea what day or even month it was (although he knew he had "just" turned 27), or where he lived. He was doing a great job of letting us know what was wrong with him though. "My left shoulder is really sore" he would say periodically, which would prompt the ambo to ask if he wanted something for the pain, to which he'd reply "Nah, I'm right mate". He hadn't had a helmet on, and I was more than a little worried about the effects of the head injury.

Arriving at the hosiptal I was dispensed to the waiting room and the boy wheeled away into the trauma ward on the gurney. An anxious wait for me ensued, I tried to take an ernest interest in a 1997 National Geographic article on the debate about Quebec seceding from Canada (perhaps Laura can fill me in on more recent developments), and then a photo essay on ants with antlers, but it was an effort to keep my mind occupied.

It was about 10:45 at night, an hour after we arrived, when I was allowed to see him. I was greatly relieved to note that he was a lot more coherent, although when I saw him again today he didn't remember much from that time. He'd been CT scanned and xrayed, and it seemed that while his collarbone was badly fractured, there were only a few other grazes to worry about and his head was ok. Greatly relieved, I talked to him for a while before a friend from the barbie picked me up from the hospital.

The rest of our friends and fellw barbequers had retired to a pub near our house to wait on news, and I can tell you that by the time I got there I was sorely in need of a stiff drink (not something I usually partake of these days because of the CFS), and I downed at cointreau lime soda (cointreau being the stiffest drink I could think of that I liked) at quite a rate. Then I went home to sleep. Man was I tired! It was probably around midnight by that stage and I certainly wouldn't have stayed out that late had it not been for the accident.

I got up around 9 and rang my supervisor to let him know I wouldn't be at uni today, then I packed somethings for my darling and went to see him. Turns out they'd operated last night to clean up his wound - when his collarbone broke it pierced the skin, so there were concerns about the risk of infection, and particularly bone infection. Apart from being very sore and sorry he's ok. It was quite strange being the one who asked to do things, fetch things, help out and generally compensate for his difficulties. While I'm sure his mind is on other things, it must be a shock for him to be reliant on others, and particularly me for a change.

Anyway, I'm just glad he's going to be ok, although I won't get him back for a couple of days yet because the hospital want to keep him there to make sure he doesn't get an infection, and then to do another operation to set the collarbone. So much for a nice quiet barbie by the river with friends!

Have you seen my glasses?

2007-01-09T12:59:00.000+11:00

I seems to have lost them. :(

I am not very reliant on my glasses - my prescription is fairly minor - but they do make computer work a bit easier. I've been on holidays for 3 weeks now and I didn't bother with them then. Now that I'm back to work I'm finding it rather a struggle without my specs.

Last night I had a big hunt for them, but search as I might I could not find them. Todays my eyes are tiring again and I think tonight I will have to have another hunt, although I can't think of anywhere I didn't look last night. Anyway, hopefully this hunt will be more successful than last night's search effort.

New beginnings are fun but tiring

2007-01-09T10:07:00.000+11:00

Oh I am tired. This is not an unusual state of affairs, but for the last three weeks, if I am tired I have been able to just sleep in, or even stay in bed if it took my fancy. But not this morning, oh no. This morning is the second day of my return to uni, and the second day of my PhD. Yesterday was a big day!

I arrived at uni around 9am, hoping to make a good first impression, but my supervisor didn't turn up until 10, so that was a little pointless. In between getting lost (which I did twice in the first hour), I did manage to sort out my enrollment, or rather the fact that I am not presently enrolled. I am sure I also gained some understanding of the layout of the campus, although I don't think it has helped too much just yet. I also managed to find (accidentally, while getting lost) the engineering library (useful to an engineer like me) and also the main library.

Once my supervisor arrived I found my desk, a computer and various other necessities. At morning tea I met about a billion people (at least 7 anyway). I think I did more walking yesterday than I had done in total in the 2 weeks prior - Melbourne Uni campus is a little larger than Adelaide Uni, and it probably didn't help that I kept getting lost and traipsing uneccesarily through parts of the uni I didn't need to go to.

What with all the meeting and walking it quite wore me out. But it was quite exciting and a lot of fun, and I am very pleased I have taken the plunge. Here's to new beginnings!

I'm back! Sorry for leaving without saying goodbye...

2007-01-03T14:05:00.000+11:00

I realised as I was halfway between Melbourne and Narooma, that I hadn't put up a "Happy Christmas I'm buggering off for a couple of weeks" post. Well, I had no internet access anywhere on my trip except for 10 minutes at my Nan's place (yes, she's 81 and she loves the net...), so I never go to put that post up.

But now I am back from my gallivanting around the countryside, and I promise a ripper post as soon as my inspiration returns. I hope you all had a wonderful Christmas and all my best wishes for the new year. :)

Christmas, food and CFS

2006-12-15T11:20:00.000+11:00

For most people, especially in Western countries, Christmas is a time of celebrating and enjoying time with family and friends. There's a lot of eating and drinking and being merry that goes on, and for people with CFS, this can cause a number of problems. Shopping - trying to buy all those pressies without ruining your health, let alone your budget, being merry - again, same issues with health apply, and of course easting and drinking which is where this post is focussed.

For me, eating is not such a problem (except for typing the word, which is causing me quite a hassle today). But for a lot of people with CFS getting the right balance of foods and avoiding certain no-no foods - often quite a long list of them, is a really important part of their symptom management.

But for me, drinking is the real problem. I'm a would-be wino. I would be a serious wino. I used to drink a glas of wine just about every night, almost religiously. I lurve wine, a lot. Good wine, not that crappy stuff. I can tell you the difference between a cabernet sauvignon and a cabernet merlot, I can tell you my favourite white and red varieties and what I like about them, and I know the best (Australian) regions to buy certain wine varieties from (Barossa for shiraz, unless it's from Heathcote which also makes very yummy shiraz, Yarra Valley for pinot noir, Eden Valley for riesling, and the King Valley for the yummy cheap sauvingnon blanc that our local cleanskin outlet sells). And if I'm in a really wanky mood I can sometimes identify certain flavour components of a wine. Seriously love the stuff. And I come from a family with a very stong tradition of being winos - on both Mum's and Dad's sides of the family. My maternal grandmother is the one person who I would bet on to drink my 27 year old, 6'8", very sturdily built housemate under the table.

So why am I a would-be wino and not an actual one? Well *sigh* I am seriously intolerant of alcohol. I don't even go near beer as it just makes me feel ill after a couple of sips. Wine I am slightly better with - I can get through a few more sips before it destroys me, and spirits are not so bad (a glass or two of spirits with a mixer is often ok). It is so unfair. It's just one more insult to add to the list that come with CFS. One more thing I can no longer enjoy. The worst time for noticing this is at Christmas, when the whole family is enjoying a nice glass of wine of champers with the Christmas lunch, and then another one (or several) with Christmas dinner...

But I shouldn't be too bitter, there's still plenty of yummies I can be enjoying over Christmas, in my case the meat isn't such a draw-card, but I do love roast vegies, seafood, and sticky-date pudding (I don't like c
Christmas pudding, so I make this instead). Mmm....

So, what can't you eat that you would like to? And more importantly, what's your favourite Christmas yummy that you can still enjoy?

Laser acupuncture

2006-12-13T16:17:00.000+11:00

So that you don't spend the whole time it takes to read this post wondering what laser acupuncture is, here's a brief rundown before I go on... This is of course, from my perspective as a patient, and is not in any way a technical explanation. Basically it's like normal acupuncture, as in acupuncture points are stimulated by something, but that thing is a laser rather than a needle. And where acupuncture needles would be left in for 20 minutes or so, the laser is only applied for 10 seconds or so, so the treatment is very quick.It is completely painless, and you don't feel anything... Except once, on my occipitales (at the top of the neck / base of the skull), I felt some heat, which can happen at times aparently.

I have recently had 6 sessions of laser acupuncture in 3 weeks, preceded by a a meridian balancing. I am now having a rest of a couple of weeks to see how my body responds. I had hoped that it might help with my CFS symptoms. I chose laser acupuncture because I have a very irrational fear of needles. I know they don't hurt much, and I know they're not bad for me, but they just make me freak out and faint. Nurses love me because I know this and I always threaten to faint unless they let me lie down to have needles. Usually I don't faint if I'm lying down, but I have trouble with the idea of subjecting myself to a number of needles left in place for 20 minutes or so. I don't think I'd cope. I once actually thought a friend was using an acupuncture needle on my neck (he wasn't, he was using a pen-nib to create a lot of pressure on a pressure point), and I freaked out so badly I fell unconcious and went to another place and was very disoriented when I woke up again. It was very unpleasant, and has probably also fuelled my fear of acupunture.

So I've had the laser acupuncture, but I can't say I've noticed any significant (significant can be small, I'm not saying dramatic...) improvement in my symptoms since the treatment started, or in the rest period since it ended. I did notice quite a significant improvement in my levels of back pain for the three weeks, but I am a little concerned that this may have been masking a misalingment in my spine because last thursday I put my back out much more badly that I have in the last few years and consequently spent the next four days mostly bedridden. But my back pain is unrelated to CFS anyway.

But apart from that... zilch, nada, nil. Nothing apart from my ordinary fluctuations. I have been generally a little better in that last 6 weeks or so, but I think I can credit most of that improvement - if it is an improvement and not just a longish positive fluctuation - to the drugs I am taking. But I think it's too early to start singing their praises yet, I am still reserving judgment.

So... I'm wondering If I should get over my fear of needles and try "real" acupuncture, or whether I should just give it up as something that I tried and it didn't help.

Lying on my back thinking about how lucky I am.

2006-12-08T15:50:00.001+11:00

I spent the weekend in bed. No, it had nothing to do with chronic fatigue syndrome, and no, unfortunately the weekend wasn't spent shagging some incredibly gorgeous guy (I mean my boyfriend, of course...). Sadly, I put my back out on Thursday night, whilst getting changed for my work Christmas party (which I consequently didn't go to). See long before I had CFS I had another chronic problem - back trouble. I say "trouble" and not "pain" because for the majority of the time my back is fine, but for a significant minority of the time it is a little uncomfortable, and for a thankfully very small amount of time it can be very painful and stiff. This weekend turned out to be one of the latter times.

Fortunately I had the house to myself, so I could lie in bed and grit my teeth, moan, or just get interminably bored without feeling like I was missing all the fun , even though I was missing all the fun of either a regatta or a road trip to Canberra, our nation's glorious (note the slight sarcasm)* capital, for a party.

So, lying flat on my back yesterday with only the radio and a book to distract me, I've been having a good think about how lucky I am with my activity level. Jennie published a great post today about baseline activity level and it really got me thinking - I've got it good.
I have big fluctuations in my daily activity level, but on most days I can get up, shower, drive to work, work a full day and drive home again. Whether I can then cook dinner or do anything more interesting than lie on the couch is a different matter. I can only do this 4 days a week, 2 days at a time. And I often spend my days off reading or watching TV or doing other non-energetic things. I manage to attend a couple of rowing sessions a week (I steer the boat), and I usually go out for dinner one night a week. On bad weeks I take an extra day off and don't go out socially at all. And then I feel severely restricted and often mope about my situation.

Anyway, the point of all that is to illustrate that I'm not badly affected by CFS, and yet I seem to achieve so little compared to some people with CFS who are more affected than me. It's terribly unfair that these highly motivated and talented people face the privations that they do. Many achieve great things despite this. Think of Laura Hillenbrand, of Seabiscuit fame (I know, everyone's fave example, but she's good, you've got to give her that). If you haven't read her story, go here and find out about the horrors she struggled with, and continues to do so. She is obviously an incredibly talented and driven writer, and just imagine what she could have achieved if her activities hadn't been so severely curtailed at such a young age.

Now I don't know that I'd put myself in the category of talented, but I think I can give myself some credit for motivation. In my past life I was studying fulltime, volunteering a couple of hours a week at the local council, coaching gymnastics, writing book reviews for the uni paper, and spending several hours a week training and competing in springboard diving. Oh and I have a busy social life too. And now I feel unfairly prevented from engaging in a similar amount of activities. And it makes me very angry to see "normal" people leading sedentary, plodding lives, content to work their 48 hours a week and have a few drinks with friends on the weekend. If you are one of those people: You could be doing so much more with your life! I know I shouldn't judge these people, after all, not everyone actually enjoys filling every second of their lives with something busy, or needs to do so for entertainment. But I can't help it. I'm jealous. I'm not jealous of their sedentary plodding lives, but I'm jealous that they take them for granted. I think many people with CFS feel this way. I think if I recovered I'd use my energies to achieve so much the phase "taking over the world" wouldn't be inappropriate.

I hope they find a cure for CFS, to free the people who will not take their lives for granted, and give them the energy and ability to achieve the great things they would like to.

* Do you have a tame Aussie traveller in your vicinity? Ask them what they think of Canberra. 9 out of 10 will tell you "Canberra is a hole", quite possibly in those exact words. Imagine a country town... which is full of bureaucrats... which, despite it's population of 300,000, calls itself a "city", and not only that, but this unnatural city runs the rest of of the country, despite being totally out of touch with the way people in the rest of said country actually live. I sounds more bitter than I am, Canberra has many of Austalia's top scientific and cultural instutions, it just doesn't have much else to offer. And it is certainly and unnatural place. The Wikipedia article makes comment on this re the purpose-built nature of the city. It is more eloquent than I am.

Oh my golly gosh!

2006-12-04T10:51:00.000+11:00

I saw this on tumblyday today. It's so completely unrelated to most of the posts on this site, but what the hell, it's a lot of fun. Hmm... maybe I need to work on my reality-checking abilities. :) I always wanted a unicorn. And I do love rainbows...

Phoenix Rising CFS Newsletter

2006-12-03T16:22:00.000+11:00

I don't usually post on a Sunday, not strictly because it is a "day of rest" but for fairly similar reasons (ie I am either resting or having too much fun to be blogging). But what arrived in my inbox today deserved immediate attention, so I don't forget (lousy memory) before I get around to posting about it.

Today I recieved my first Phoenix Rising newletter. I was truly astonished. Run by Cort Johnson, himself a person with CFS, the newsletter analyses CFS research published in the last month. Only last night I was having a discussion with friends about how difficult it is to wade through the implications of research into various aspects of CFS and how important I consider doing this, given how little knowledge the average GP has about the condition. I am incredibly impressed at the depth with which the newsletter delves into the current reasearch and the analysis that the author undertakes.

If you are unfortunately afflicted with CFS I would definitely recommend signing up to this newsletter, it is an amazingly useful read. My congrats and thanks to Cort Johnson for providing such a woderful resource for people with CFS.

* updated. Discovered the previous problem with Blogger was because I had not updated Mozilla Firefox for rather a long time. Oops.

Tattoo you. Or me. Perhaps.

2006-11-28T11:38:00.000+11:00

Of late, I have been seriously considering getting a tattoo. I have never in my life before this wanted a tattoo. I don't find the idea of having a tattoo abhorent, au contraire, I find small intersting tats quite attractive. I just could never think of a symbol I would want permanently... well, tattooed, onto my body. Until recently. And now, I can think of one.

It is a lion. I am a leo, and I am very much a typical leo, much as I hate to admit it at times (at other times I am quite proud to be one - that's a leo thing). So the lion has always meant a little to me (good and bad). But, more to the point, a lion is also a typical symbol of strength and courage. And I feel of late that I need a constant reminder to have strength and courage in the face of adversity. I have faced adversity, although I don't think I've faced nearly as much adversity as some people. But I have faced it. And I have won. A few times. But it seems that each time I face adversity again, I need to be reminded of my past triumphs before I find the will to fight again. An no doubt, having a symbol of strength and courage would help remind me.

But, I'm still not sure about the tattoo. For one thing I really hate needles. Yeah, I know, that's a major stumbling block. Secondly, I still have a few "tattoo = permanent" issues to get past before I take the plunge. Oh and then there's the question of where to get it tattooed. I have considered this extensively, btu haven't yet reached any conclusions. It must be somewhere that is easily visible to me (in the right orientation - ie the lion's not upside down to my eyes) when I want to look at it. But it must also be discreet enough to hide from clients when I am working (being a young woman in a male-dominated industry, I have serious establishing-my-professional-integrity issues). Most of the body parts that fit the first criteria failed the second, and vice-versa.

On the lighter side, if I ever do get a tat, and I ever have children, there's literature out there to help them come to terms with my body-marking. I can read them the book Mommy Has Tattoos.

The Joy of Picnics

2006-11-27T15:59:00.000+11:00

I've had two picnics recently - one on each of the last two Sundays. It has convinced me that picnics embody the carefree joy of the simple things in life. Last weekend, The Boy was away in the country for the whole weekend. I insisted he arrive home on Sunday in time for dinner, and whisked him from the train station to my favourite bend in the Yarra River, where we set up picnic complete with dips, bread, wine, fruit and cheese. Oh, and dolmatis, which we both love. As dusk fell we ate our fill and then lay down to watch the bats fly over in their evening exodus to search for food. A beautiful sight, thousands of these creatures fly out each night, and the site from the banks of the river is awe-inspiring. The possums weren't as impressed, however. They were also rousing for the night, and their bowel movements (largely directed at us, although probably not intentionally) eventually sent us home.

This Sunday, I met a friend in town in the afternoon, and after we'd finished checking out Sexpo (long story, free tickets), she dropped me at a large park near my place, where one of The Boy's friends was having a birthday celebration. It was a lazy Sunday arvo affair, complete with friends, booze of your choice and no shoes. I had been reluctant to go along after my tiring afternoon in the city, but sitting around chatting and lazing in the receding sun is good for the soul. When the temperature dropped The Boy and I crossed the road to visit my favourite restuarant, the Moroccan Soup Bar. What do you know, they had a table for the two hungry picnicers (they never have free tables!), and we got a yummy fulfilling meal to top off the afternoon.

Hooray for picnics and other simple pleasures.

When Will I Learn?

2006-11-20T10:16:00.000+11:00

When will I learn not to overdo it just because I'm feeling wonderful at the time? I thought I had learned that lesson, but No... I went and did 20km of bike riding in the last week (because I was feeling wonderful) and had a late night last night, and now I am feeling my usual tired self. And I am feeling all the more tired and grumpy because I know it is All my own fault. Just because I have a few days of feeling relatively normal (by everyone else's definition), I had to go and psuh my luck.
Sometimes I wonder if it's subconcious self-sabotage. You know - not letting myself get the rest I need, even on good days, to let me see an ongoing improvement in my health, rather than this fluctuating up and down rollercoaster of health and lack thereof. But then I think of all the things I yearn to do when I am well again, and I know it's not self-sabotage, it's just that I can't help trying the things I love whenever I get a brief window of opportunity. I hope it will open wide, but I know it's just as likely to blow shut, so I want to taste the fresh air and feel the sunshine while I can. Don't we all.

Western medicine vs alternative medicine

2006-11-10T16:58:00.000+11:00

I went to the "Know Thy Self" clinic yesterday. The name says it all - it is a complementary medicine Mecca. Acupuncture, Chinese medicine, meridian balancing, mind-body-soul workshops. The woman who runs (we'll call her Ms Know-thy-self) it is quite eccentric but seems very good. And I was impressed (maybe I'm easily impressed) by the fact that she wants to get to the reason for my symptoms in order to alleviate them. I don't know how easy that is in practice, but it sounds like a nice idea. And the prescribed program for me sounded very holistic.

All in all it was all going well until we got to the "What medications are you currently taking" question. You know the one, you've had it yourself dozens of times. I don't take many medications and until recently my answers were almost disappointingly bland. When I saw my physician for the first time, he raised an eyebrow when I told him about taking essential oils, but he duly noted it down on my information patient sheet and moved on. So when Ms Know-thy-self asked, I started with the most obvious one that came to mind, the anti-depressant my physician has prescribed. A few questions about this followed - starting dosage, current dosage, length of time taking it... The "how do you feel about taking it?". So I explained my previous reservations about taking anti-depressants, and my horrid experience with Allegron. And then I went on to explain that I was comfortable taking Aurorix and I hadn't really had any side-effects (except slight dizziness), and I was happy to try it to see if it helped.

Frowns ensued... Followed by smiling explanations of why Ms Know-thy-self doesn't like anti-depressants, believes that you can only heal the body with natural products, not man-made ones ("Have you tried telling cancer patients that?" I wondered), and that she would like me to stop taking the anti-depressants (in consultation with my physician). She went on to reiterate this at several points throughout our consultation.

This annoys me a lot. The fact that practitioners of "western" medicine and practitioners of "alternative" medicine continue to sneer at each other from different sides of the fence, rather than coming together to solve a particular patient's problem. It puts patients in the very uncomfortable position of having to either choose to take one path or the other, or fly solo by trying to combine different approaches without the support of their various medical practitioners. This situation becomes, I would suggest, dangerous when drugs (to use the term loosely to include herbs, supplements etc as well as prescription meds) come into the picture. Practitioners of western medicine rarely have an appreciation of how conventional drugs might interact with other supplements or herbs, and alternative medicine practitioners are just as bad at knowing how their herbs, supplements etc might interact with conventional drugs. And the poor patient is required to try and sort through this themself, usually with no medical training of any sort.

Quite frankly I find it very frustrating. I would like to see a more integrated approach, where the patient's chosen medical practitioners come together to discuss their combined approach to the patient's health, and it is managed holistically. Oh for an ideal world. I have generalised in making the above statements, but I believe them to be true in the vast majority of cases. The situation is certainly perpetuated by our education systems, which clearly delineate between western and alternative medicine and, I believe, help to breed this unhealthy disdain and distrust of each for the other.

Whispering over the noise

2006-10-31T13:50:00.000+11:00

How do you tell a friend you have CFS? No, please don't say "Just say: 'I have chronic fatigue syndrome', and be done with it". I mean how do you go one after that and explain to someone what that means in terms of your life, your ability level, and in terms of your interactions with them...

It has gotten to the point where I don't actually remember which of my friends know that I have CFS and which don't. Partly because I'm forgetful, but partly because I deliberately don't tell some people, and I often hedge my way quite carefully around questions about my health. I guess as a rule my closest friends who I see or speak to frequently know, and the rest don't. My family all know, and the rowing boys know, although when one suggested that I hop on an ergo (rowing machine) to warm up the other day, I realised that they don't really know what it means to have CFS.

I guess part of the reason I don't tell too many people about my CFS is because it actually takes quite a bit of explaining, and subsequently some consolidating of what I've said through seeing me at various points on the energy scale, for someone to understand what I mean when I tell them I have CFS. And I'm not very good doing that explainning yet. It doesn't help that I almost never look sick. My boyfriend can usually tell by my behaviour when I'm feeling unwell, but he's a veritable mind-reader and even he can't pick my state of health infallibly. And apart from him, there isn't anyone who can tell the difference between when I'm feeling almost well enough to try riding a bike again, and when I'm on the point of physical collapse. Even my other housemates have no idea.

It's not an uncommon problem, everyone with CFS must experience the same thing, especially in the early(ish) days. So can anyone out there give me their experiences with telling their friends they have CFS? How did you go about it? What worked and what flopped, and how did people react?

I know there are a few people out there who read this but don't comment. If you want to tell me your experiences but don't want them made public, include a comment to that effect in your post and I will not publish your comment (Scouts honour, even though I was never a scout and I'm not even a guy).

Audiobooks

2006-10-27T08:37:00.000+10:00

I'm about to try my first audiobook. My first as an adult anyway. It's downloading as I write.

When I was too young to read, I used to have a whole bunch of fairytales on tape, and I used to listen to them all the time. There was one about a tin soldier, one about... hmm... I actually can't remember any of the others. It was very tragic. I've just looked for it an found it was by Hans Christian Andersen. Anyway, I have always had a warm feeling towards audiobooks, the whole childhood association I guess. But I've never listened to one as an adult.

I know lot of people with CFS really enjoy audiobooks because it allows them to experience a novel without having to read it, which can be quite tiring and for some isn't possible because of the severity of their CFS. I'm lucky not to be at that point, but I do find reading quite tiring. On Wednesday, my day off work, I read a friend's mother's new book Sex and Money*, in one sitting (a few hours, it's not a long book). Afterwards I was very tired for the rest of the day, and I believe I am still suffering the consequences a couple of days later.

And so we come to the audiobook. As luck would have it, the Australian iTunes music store just turned one. As a birthday gift to all its subscribers (of which I am one, although I've never actually bought anything) there are some songs you can download for free, and a free audiobook - Bryce Courtney's The Power of One. As luck would also have it, I am possible the only person in the english-speaking world who hasn't read this novel. So, lucky me, I get to hear it for free.

The first three chapters have just downloaded, so I'm off to work, and I'm sure you can guess what I'll be listening to on the way!

*Sex and Money isn't actually on her website just yet, but I'm sure it will be soon!

All those little things...

2006-10-26T13:23:00.000+10:00

Little things annoy me. I am fairly sure I am more irritable since I got Chronic Fatigue Syndrome. The thing that is annoying me today is very minor. Most people wouldn't even notice it, but I have, and it's giving me the shits. I saw the physician today. The one who does the anitdepressant thing. Although I am even more skeptical about antidepressants than I was before my first disastrous experience with them, I have decided to try his alternative, which he claims helps a lot of people too. And hopefully won't make me worse like the last one did!

Anyway, none of that annoyed me, what annoyed me was when the appointment was over, I paid and the receptionist printed my receipt. My receipt, which is just going to be sent off to Medicare to get me a rebate (Medicare is our government agency dealing with health care) is printed on higher quality paper (much higher quality) than the paper that my work uses to print professional proposals that will be used by potential clients to assess our suitability to undertake a piece of work (sometimes a quite large piece of work of the order of AUD200,000 or so).

This annoys me because when I pay my doctors fees, I do not wish to be paying extra so he can print receipts on nice shiny paper. I'd rather pay less and get crappy paper quite frankly. I guess it also annoys me because it points out how stingy my work is, really, because I don't think my doctors receipts deserve higher quality paper than our proposals.

The good things about having CFS (there aren't many)

2006-10-23T15:20:00.000+10:00

Taking the "silver lining" approach, I have decided to write about the good things that have come from me having CFS.

Patience
They say patience is a virtue, but it's not one I ever possessed. I'm impatient to the point where I would rather walk up 4 flights of stairs rather than wait for the elevator. As for waiting for anything more important than an elevator, forget it. When I want it, I want it now. Think Veruca Salt - " All I've got at home is 1 pony and 2 dogs and 4 cats and 6 bunny rabbits and 2 parakeets and 3 canaries and a green parrot and a turtle and a silly old hamster! I want a squirrel!". Well, I'd like to think I'm not quite that obnoxious, but I am certainly not the most patient person I know. But these days, well it's par for the course to have to wait for things. To wait for a day when I feel well enough to do some shopping. To wait another year (or so) until I'm well enough to do that trip to South East Asia that I was going to do with a sister and a friend. I can't say patience has become a natural part of my character, but it certainly comes more easily than it used to.

Self-analysis and understanding
I've always been an introvert in this regard (in many others I am quite an extrovert), but CFS has made me more so. I now know what stresses me out (silly things like a car breakdown, big things like hypocrisy). What I care about more than my health (meeting commitments, and sometimes seeing my friends), and what is less important (how tidy my room is). What I can't live without (my wonderful boyfriend) and what I wouldn't miss (alcohol, with the exception of good red wine, which I actually miss a lot). I've discovered I am more vain than I previously thought, and less tolerant than I would like to be. I have also realised how much I value my intellectual capabilities, and how much I define myself by them. And I've realised how little I really understand myself.

Appreciation of the small things
Like a yummy home-cooked dinner, a lazy sunny Sunday, being woken in the morning by a boy grinning, bouncing and saying "Wakey-wakey!", or seeing hot-air baloons out the window of a morning.

Working 4 days a week
Seriously, no one should have to work 5 days a week. Life is so much easier when you don't.

Not sweating the small stuff
Admittedly, I'm very much still a learner in this area, but I have learned to accept that if a client doesn't get a report they've requested until the day after you originally said you'd provide it, it's not really the end of the world. Similarly, if your car looks like an embarrassing bomb-site when you give a friend a lift, they're probably not actually going to care all that much.

Listening to my body
Going to bed when I'm tired, having a lazy day when I need to. Cancelling dinner with a friend I when I'm so tired I know it'll only make me worse... I'm getting better at this, although I still haven't found a comfortable way to excuse myself from gatherings at my house when I need to go to bed. Knowing that a sore throat means I've seriously overdone things and need to give myself a restful week. Going to the doctor when I feel sick.

US ban on Vegemite

2006-10-23T09:04:00.000+10:00

Why have the US banned Vegemite? I know this is off-topic, but I am outraged! It is a travesty to deny all those hard-working Aussie expats their source of rosy cheeks. And I find it simply absurd that US citizens have the constitutional right to carry guns around, but they won't let poor, innocuous Vegemite into the country simply because it contains a little folate, which is good for you! I know that it's not to everyone's taste (tip: spread it very thinly, don't eat it off a teaspoon, what's what Aussies tell you to do when they want to ensure you won't eat their stash!), but is it really that offensive? Anyway, this firms my resolve never to live in the US (as if having Georgey as president wasn't enough to do that).

Row, row, row your boat gently down the stream

2006-10-20T11:00:00.000+10:00

Rowing season has started again, and my weeks are getting busier. This week I had training on Saturday, Monday and Wednesday, the club open day on Sunday and our first regatta is tomorrow. It's in Bendigo, about 2 hours drive from Melbourne. That sucks a bit, but I have arranged to give one of the crew a lift on the proviso that he drives home if need be. That will make it easier on me.

It's good to be back into activities. Even though I'm not back to being active, it makes me feel like I am being active. And it can be very good relaxation being on a boat on the water on a warm summer evening. So close you can trail your fingers through the water if you want. Not that you would want, given the heavy metals and bacteria concentration in the Maribyrnong... But still...

Juicy fruit.

2006-10-19T16:56:00.000+10:00

My juicer is my friend. It was a present from my parents for my birthday in August and I am just as excited about it and pleased with it as I was when I brought it home from the shop. I'm a healthy eater naturally, but I must admit that sometimes I don't get all the fruit and vege my body needs. I think sometimes I don't really feel like eating an apple, or a pear, or anything else in particular. But I love juice (always have). And I love being able to combine a range of fruits to make yummy flavours. And I especially love ginger and lemon in my juice. I also like being able to buy really cheap fruit that is either battered and bruised or heading for its use-by date, and turn it into a treat fit for a king. Mmm... Juicy goodness.

Here comes the sun and I say it's alright...

2006-10-18T11:20:00.000+10:00

Well, I feel well. Well reasonably well anyway. I certainly feel one hell of a lot better than I did even a week ago. I appear to have recovered from the setback the antidepressants caused. I even feel like my brain is working a little better than it has in the recent past. I am still trying to decide if I feel capable of accepting the PhD scolarship I have been offered, so that comment is more significant than it might otherwise be. I made it through a whole yoga class on Tuesday night. Admittedly it was less strenuous than usual because of the heat yesterday, but that's still a big achievement.

It's coming around to summer again here in the Southern Hemisphere (we had a 37 degree day last Thursday, so one might argue summer has already arrived), and it's got me wondering, how much is my CFS influenced by seasonal factors (if at all)? I haven't had CFS for all that long, about a year and a half now, and it started after I had glandular fever (mono) last Autumn. It lasted all through the winter and right through to December, and then it started to improve. In fact it improved so dramatically that by about March (early Autumn), I thought I had recovered completely. I was taking dance classes, and planning to take a circus class (swinging trapeze, of course...). I was going to the gym once a week. I was cycling frequently and I even went out rowing once (probably one of the toughest forms of exercise around, in my experience).

Come May, however, after a nasty Canadian flu, I started on the slippery downhill slide once again. You know how it goes, more easily tired, recurring colds, sleep disturbance, muscle fatigue and exercise intolerance, alcohol intolerance, cognitive difficulties, etc, etc...
I've managed to pull out of that downhill spin, and to slowly improve again. I haven't had a cold for a couple of months, I am coping better with work, and am getting our socially a bit.

Lately, I am even beginning to feel my "normal" latent energy sitting inside me, waiting to burst out in some expression (yes, I do actually feel like this sometimes, it's like little fireworks in my chest, waiting to go off). But this latest improvement, which is probably the most dramatic since I relapsed in May, has coincided neatly with the increasingly warm weather. And it's got me wondering, am I going to have another wonderful summer followed by a relapse next winter, or was it all just a coincidence of timing last summer?

I looked up seasonally affective disorder (the neatly named "SAD syndrome", on the off chance that it was a possible explanation. But when I look at the symptoms of that syndrome, they're really nothing like mine, and for the greater part I don't have any changes in mood associated with my worsened symptoms.

Of course, I won't be able to determine whether there in a seasonal influence in my symptoms until at least next winter, but I am interested to know, do any of you have relapsing/remitting patterns that follow the seasons?

Quotable

2006-10-13T08:54:00.000+10:00

I just found a really good quote, on my calender again...

Loneliness is to endure the presence of one who does not understand. - Elbert Hubbard

When I am rich

2006-10-11T19:15:00.000+10:00

It's nice to dream sometimes. Like now - I'm dreaming about what I will do when I am rich. It's a complete pipe dream - I will almost certainly never be rich, firstly because I do non-career-advancing things such taking a PhD after 3 years as a graduate in consulting where I have a bright and probably lucrative (compared to academia) future. No one gets rich with a PhD in environmental engineering. Secondly, because I like to live the good life. I like good food, good wine (although not so much lately, more some other time) and good friends, and I like to combine them all as frequently as possible. I also like good clothes and good perfume (my latest obsession, more on that some other time too!). And thirdly because while I am good at maths, I am useless with money. I have three different accounts, one of which is exclusively for keeping my money for rent and bills in so I don't spend it, another which is for savings, and a third which is for everyday spending. It took me a year after I moved out of home to learn how to budget, and as you can see from the above example, I'm still a bit iffy about how the whole thing works. Which is not to say I am loose with my money, but I am careless and forgetful about it (even without CFS to confuse the issue. I should probably add fourthly because I have CFS which may well curb any hope of a career anyway, but that's quite a morbid thought, so we'll just forget I voiced it, shan't we.

Anyway, just supposing I do get rich, I am going to become a philanthropist. I have been reading my boyfriend's mum's "Numbers" book lately (ie numerology). I could say I don't really truck with all that bullshit, but I'd be lying. I like to think that's my approach, but truth be told I do like a bit of that mystical symbolism in my life. Anyway, according to the numbers book I am bound to use my power and influence (hehe) for good not evil, and specifically as a philanthropist. Now you have to understand, philanthropy is not a big thing in Australia. Unlike North America where many cultural institutions are supported by generous donations from philanthropists, in Australia philanthropy has never become a large part of the culture of our wealthy (with the notable exception of a few wealthy families such as the Myers. This means, amongst other things, that our cultural institutions are languishing under the measly funding regime of our stingey government. So are our scientific institutions. I was reading today about the Alison Hunter Memorial Foundation, who seem to be doing great things in the way of advocacy and funding research for CFS/ME. Reading the horrible story of Alison Hunter who was told early in her illness (she had CFS/ME at a young age) "In 10 years we'll have a cure", only to find that 10 years later this was not the case, it stuck me how common such stories are among sufferers of severe CFS.

It's a big call, but quite possibly the most disempowering thing about this illness is the controversy and confusion surrounding it, much of which has probably been deliberately created, and the dismissive attitudes of the general public, friends, family, and even Doctors (who quite frankly should know better. It makes me cross!). I won't labour this point, but it rates a mention because this is what is driving my thoughts of what to do with my money when I have too much to spend it all on food, wine, friends, clothes and perfume.

I'm going to fund research into CFS causes and cures. No psychologists or psychiatrists will be getting any of my money (sorry psychologists and psychiatrists, you're good for lots of things, but you have a very bad record in this arena), just doctors who are looking into the biological causes of CFS, and importantly, how it can be cured. But more than this, I would like to start a research institute, nay, a centre for excellence in CFS. In Australia. I feel that Australia is lagging severely behind the US and possible Europe (althoug it sounds like you're getting a bum deal in the UK with the CBT/GET bandwagon driving things).

I will also assess general practitioners and physicians who are working with patients with CFS and selectively support their endeavours. I find it appalling that in this day and age in Melbourne (which is quite a big and important city :) - we had the Commonwealth Games you know!) that I have to wait 6 months to get an appointment with a GP specialising only in CFS, because he is so inundated with patients that he can't take any more. Another specialist turned me away in August because he is also overwhelmed and isn't even considering new patients until the new year. These people need support! They need the support to train others so such waits don't exist!

And I will start a not-for-profit support organisation for people with CFS. I haven't thought this one through so thoroughly yet, but I'm thinking Meals on Wheels, I'm thinking cleaning and shopping assistance, I'm thinking carer relief. In general, I'm thinking things which mean that any spare energy that someone with CFS has can be spent on more enjoyable things that chores, and that carers for people with CFS get the help they need to be a good carer and have a fulfilling life of their own.

And this is how I will dress:

No really, I will. :)
Yes it's me, in the Commonwealth Games opening ceremony. Damn I can't wait for the day I can dance again.

And that is my manifesto. Someone please hold me to it when I'm rich. :)

Listen to your body as well as your doctor

2006-10-10T15:37:00.000+10:00

I'm off the drugs. I feel so much better today. Sadly I am still left with some ramifications, such as having more muscle fatigue than previously, but boy do I feel good compared to the last few days.

While I expected side-effects from the drugs I was given, my doctor specifically pointed out to me that I needed to understand that the drugs were "safe". Personally, when I was on them I felt like I was going to have a heart attack if I didn't stop taking them. I felt like they were putting so much extra strain on my system. I couldn't think, my arms and legs ached when I lifted them.

So what do doctors mean when they say something is safe? I (used to) do things that some people would consider unsafe. For instance, I fire twirl (spin fire for those in North America), something that scares the bijesus out of my mother. When I used to fire twirl, I would take precautions such as wearing tight fitting clothing in all natural fibres, and of course covering up my long hair with a scarf or beanie (toque - you crazy Canadians). Still, it's probably a little risky, and I have burnt myself once or twice with the hot metal bits on my gear, and I have seen my little sister set her beanie on fire (although no major drama ensued as she calmly put it out). But I don't fire twirl now, because on top of the risks fire twirling poses to normal people, it now poses added risks to me, including the risk that I will over-exert myself and relapse, and the risk that because I tire physically more quickly I will make a mistake and burn myself (or someone or something else).

Now, I also apply this principal to other areas of my life, such as asking my boyfriend to drive places when I am too tired and might pose a risk to myself and others.

So when my doctor told me that the drugs he was prescribing were "safe" I assumed he was taking the same kind of approach, given that he is a physician who deals especially with CFS patients. An especially since he commented on the fact I often get a racing heart (tachycardia for medical boffins), noting that while this wasn't part of the case definition for CFS, it's quite common for CFS patients.

But now I'm not so sure that he was. From my reading of information on Tricyclic Antidepressants, they're well known to have some concerning effects on the cardiovascular system. Given that I told my doctor about my existing heart-rate concerns, is it really "safe" for him to prescribe these drugs for me? It seems a little counter-intuitive to me.

So, let this be a lesson to me to ask questions (I did actually, I quizzed him about side-effects and potential concerns), think, and then ask a few more.

And when in doubt, listen to what my body is telling me.

Thanks to all those out there who read this and write their own stories.

2006-10-09T10:18:00.000+10:00

It was so good to read Laura's comment on my previous post - and thanks for the congrats re the PhD Scholarship :) . I spent Sunday feeling pretty awful - still drowsy and befuddled, and with muscles that just don't feel like they're getting the oxygen or muscle-food they need to work. Don't get me wrong, I'm not unused to these feelings, but I have actually been doing fairly well recently and haven't felt like this for several weeks, even on my bad days. So it's been quite a shock to start feeling like this again, and as a result of drugs that are supposed to be helping me. This morning I am still feeling like that, but my day has been brightened by the feeling that I'm not alone - that there are people out there going through the same things and finding their own paths through CFS.

So the point of this post is to say a huge Thank You! to all of you out there who read this because you're in a similar position and feel that we can all learn from and support each other. I love my friends, family and partner and they are all wonderful to me, but try as they might, they can only ever have a limited understanding of how I feel and what I mean when I describe certain symptoms, and situations. I don't have any friends (out here in the real world) who have chronic fatigue syndrome, so online is where I get my fix of "Hey, I know what you mean, I get that too!".

So many thanks, to those who read this and those who offer support. It's appreciated. Thanks also to those who write their own blogs, it helps so much to read your stories, learn from your lessons, and gain hope from your triumphs.

Can antidepressants help with CFS? Or not?

2006-10-06T10:00:00.000+10:00

The good news today is that I finally got to see the physician yesterday. It was supposed to be last week, but in a classic example of brain-fog, I wrote the wrong day in my diary and didn't turn up. *sigh* Luckily they had an appointment this week, so they fitted me in. The receptionist didn't seem the slightest bit phased by the fact I hadn't turned up - I'm guessing this happens a lot. The physician has put me on his program which he claims has an 80% success rate in 3 months. It involves taking low doses of tricyclic antidepressants (something about the noradrenaline playing a role in CFS). So, despite some strong reservations about taking anti-depressants, I decided to give it a go.

The other good news is that I have been accepted for the PhD scholarship I applied for! Very exciting stuff. It will be sad leaving my current work, which I for the most part enjoy, and the people I work with. However it will be good to start something exciting and new, and with a different pace to it.

The bad news is that I started my "happy pills" (my boyfriend's amusing label, again) last night, and this morning I feel very weird. I am writing this partly because I am finding it so hard to concentrate on work. I feel dozy and teary and my brain is in an even worse state of concentration and processing ability than it usually is! I don't know if this stuff is for me! I'm especially concerned about the teariness, as the last thing I need is depression induced by antidepressants. So I don't really know whether to stick with the program or ditch it while I'm ahead. I think i'll at least try again tomorrow to see if this is just an aberation, but seriously, if this is what it's going to be like, I think I'd rather find another route to health, even if it is a little slower.

Aromatherapy or the placebo effect - either way it's helping!

2006-09-22T16:09:00.000+10:00

Man, I have been so slack with this! In my defence... no nothing, I have just been slack. I suppose the reason is that lately I have stopped having so many crises with my condition, I think I'm getting a bit more used to managing it. And my boyfriend is getting a bit more used to my swings and roundabouts and to dealing with things too. Which is nice, it takes the stress of worrying about how he's coping away from me. But what that all means is that I am not putting such a focus into managing my problems, so I forget to write about what is going on, the good stuff as well as the bad.
So, today I think the main focus is reporting back about the essential oils... I was only taking them for a week initially, but as a consequence of my experiences, I have just gone back on them today, so I will have more comments soon.
I didn't see any dramatic improvement, but I did manage to fight off a cold, which is practicaly unheard of normally. I also didn't have any days when I was very tired or weak - something I would usually experience about once a week. I also managed a night out drinking with friends until around midnight on Saturday. I even pulled up ok the next day (except for a bit of a hangover). I haven't even attempted a night out like that for months because not only would I not have been able to get out of bed the following day, I simply wouldn't have been able to stay out that late anyway.
My boyfriend has also noticed an improvement in my state ("you've been much better this week" is how he described it) - and given that he picks up the slack when I'm not doing so well (eg doing the cooking, shopping, driving to places), that's probably a good indication I was doing better than usual. In the week and a half since I stopped taking the oils, I have been slightly better than usual, but with a bit of a decrease in my overall health recently, probably because I've been in Adelaide busy catching up with family and friends and attending a conference.
You can read my basic case notes for yourself if you like. They're not terribly exciting, but they're attached below anyway.
Day 0 - September 3 2006 - Weekend
Tired from previous day and being kept up by noisy neighbours overnight. Woke around 10:30. Feeling fluey, tired, slight headache, at the base of the skull. No muscles aches. Therapeutic aromatherapy massage. Sleepy in early evening, more refreshed after a rest (not sleep) for an hour or so. Took 1 capsule at dinner, around 7pm. Clarity of thought throughout evening.
Day 1 - September 4 2006 - Working Day
Tired upon waking. Slight muscle aches / heaviness when lifting arms. Slight fluey feeling, raspy throat. Took 1 capsule after breakfast, around 8:30am. Took one capsule before lunch, walked to plaza for lunch approx 1.3km. Usual afternoon fatigue, concentration difficulties.
Day 2 - September 5 2006 - Working Day
Slight muscle weakness in legs. Feel like i'm coming down with a cold, ie stuffy at the back of the head, raw feeling at back of throat. Took 1 capsule before breakfast, around 8 am. Took 1 capsule after lunch, around 1pm.
Took one capsule before dinner, around 7pm. Saw movie and went to pub, had approx 1.5 drinks. Tired and home to bed about 9:30.
Day 3 - September 6 2006 - Non-working Day
Slept in until 11am. Woke up feeling like coming down with a cold. Took one capsule before breakfast, around 11am. No lunch (forgot). Walked over to uni and back, via supermarket about 3.5km in total over 2 hours. Feeling tired afterwards. Took one capsule after dinner, around 7:30pm.
Day 4 - September 7 2006 - Working Day
Not feeling like coming down with a cold anymore, but slightly achey at back of head. Slight muscle aches arms and legs. Took one capsule before breakfast, around 8am. Forgot to take capsules to work, so none at lunch. Afternoon, eyes very light sensitive, gave me a headache. Took one capsule before dinner around 7:15pm.
Day 5 - September 8 2006 - Working Day
Tired upon waking, slight muscles aches arms. Took one capsule before breakfast, around 8am. Took one capsule before lunch, around 12. Took one capsule before dinner, around 7.
Day 6 - September 9 2006 - Weekend
Disrupted sleep overnight because of noisy neighbours. Woke around 10:30, tired, and took one capsule before breakfast around 11. Took one capsule after late lunch, around 5:30, feeling less tired. Big lunch, so no dinner, but took one capsule around 7:30. Late night out drinking with friends, to bed around midnight.
Day 7 - September 10 2006 - Weekend
Woke around 8:30, took one capsule before breakfast. No muscle aches, weakness or excessive tiredness. Took one capsule before lunch, around 2. Tired around 5pm. Took one capsule after dinner, around 7pm. Some skin aches around 9pm.
Day 8 - September 11 2006 - Working Day
Took one tablet before breakfast around 8am. Feeling fairly good - no muscle aches. No capsule with lunch as have run out. Slight muscle weakness in my thighs around lunch. No afternoon fatigue.

Aromatherapy

2006-09-05T16:15:00.000+10:00

I got a call from my aunt on the weekend. She's a recovery nurse, but she's also an aromatherapist. That's where her passion lies, but she pretty much takes the view that when you're sick conventional medicine and alternative medicine both have things to offer, so you take the best of each and benefit from both. Not a bad philosophy I reckon. It was really good to go and see her, she's the first person who has presented the view that I have plenty of options for steps to improve my health. That was a really positive experience, as my doctor, lovely and good at her job though she is, simply held up her hands in defeat. Well not quite, she did recommend graded exercise therapy or cognitive behaviour therapy - a sign to me that she hasn't read extensively on the topic, or has managed to ignore the failings of experiment design of the proponents of those two options.

Apart from the positive news that there are plenty of things I can try to improve my condition, my aunt also gave me an aromatherapy massage (yummy!), and some capsules of essential oil to take orally. This practice is quite unusual in Australia, but has been used extensively in Europe to good effect. The oil she gave me is a new australian oil with great immune support properties and has been used against arthritis and other auto-immune disorders. So, who knows if it will yield any imrpovement, but it makes me burp eucalyptus burps, which is great fun. (For non-Australian readers, Australian's are quite partial to our eucalytps and even make eucalyptus lollies. The oil I am taking is not a eucalypt, but is related. If you've even had pepermint capsules to settle the stomach, you'll understand the amusement of having flavoured burps. If you haven't, you really should try it sometime!)

The oil I have starts with a K, so my boyfriend delightedly nick-named it my "Special K". I've been taking my special K now for 2 days. I promise my aunt I'd keep a record of any effects or changes to my state of health, so I'll post occasional updates here too. Who knows, it could just be a quack treatment, but we've all got to try at least one along at the way, or it just wouldn't be chonic fatigue syndrome, would it?

Can you manage chronic fatigue syndrome and undertake a PhD?

2006-08-31T13:49:00.000+10:00

Possible proof that I have finally lost my mind - I'm seriously (very seriously) considering starting postgraduate study, a doctorate no less. I wonder if anyone with chronic fatigue syndrome and symptoms dominated by brain fog has ever tried this before? Surely someone has, but I wonder if all those who ever considered it were more sensible than me and turned away from the idea. Not I. Au contraire, in my possibly deluded state I actually think it might be a good move. I do have good reasons to back up this assertion. Mostly they revolve around the benefit of removing myself from my current job in consulting which I find quite stressful for a whole range of reasons, none of which actually have anything to do with the content of the work or the people I work with. I also think studying so close to home (easy 5 minute walk, fine in my current state) would mean I was using less of my energy travelling. It would also allow me to go home for lunch or a short rest during the day. I am also drawn to the potential for working more flexible hours, which would allow me to manage my energy budget better and to work when I have energy and rest when I need it.

However I do have some concerns about the capacity of my brain to actually function well enough to get me through a PhD. But then, if I'm putting less strain on myself in the areas previously mentioned, then I think I should be OK. Anyway, after having met with my potential supervisor and discussed the project, I think I'm going to go for it and give it a shot. And now that I've pretty much decided that, I am way more excited than I am scared. I just hope like hell it all works out, I know I'll be devastated if it doesn't.

Empathy (and my shameful lack thereof)

2006-08-28T16:42:00.000+10:00

"The man with the toothache thinks everyone happy whose teeth are sound." - George Bernard Shaw

I found this little quote on my flippy day calendar (technical term!) for the 28th of July. After I had flipped to the next day, I ripped the page off and stuck it next to my computer as a reminder that I'm not the only one with health or other problems, and that other peoples' issues are as valid and important as mine. In short, to remind me to retain my sense of sympathy when dealing with others.

For the most part I have been able to do that, but I had a shameful lapse recently. I was talking to my boyfriend about a friend of his whose girlfriend has psoriasis. I don't know much about psoriasis, but having seen her chafed, red, sore hands, and how little use of them she has, I realise it must be very debilitating. Anyway, she has been improving lately, since having weekly electrolysis treatment. Living in the country an hour and a half from Melbourne, she has to travel to Melbourne for this treatment. On these weekly trips, she and her boyfriend (who drives her to Melbourne because she doesn't have a license) often have lunch with my boyfriend. So the discussion I was having with my boyfriend was about whether he had had lunch with them that day. To which he commented that his friend hadn't contacted him, and maybe he hadn't come to Melbourne this week. So I asked how his girlfriend had gotten to Melbourne this week, and he said her mum sometimes brings her. To which I sighed and said "Why doesn't she just get a license and drive herself, does she realise that that would be easier?". My boyfriend's diplomatic reply was that although this had often been suggested, it wouldn't help in the present situation as she couldn't drive on account of her hands, even if she did have a license.

Well... I didn't have to wait for this comment from him to feel ashamed of myself. The moment my acid quip had left my lips I was shocked at my response, and felt terrible for not considering the incapacitating nature of her problem. My shame was increased by the knowledge that I, of all people, should well understand the need to rely on others when you're debilitated or ill. There wasn't anything I could say to make it better, I didn't bother trying. My boyfriend must have realised all the same things in the moment it took him to listen to my comment. I am only relieved that the woman in question was not there to witness my shameful lack of empathy.
I suppose the only point to this story is that no one has a market on suffering, and we should always treat others complaints with the validity they deserve. But also, no one has a market on empathy. We can only do our best and, importantly, learn from our mistakes. I have been reminding myself of this as I stare at my computer and read George Bernard Shaw's take on the issue.

Friends

2006-08-27T16:53:00.000+10:00

I've had a big weekend of seeing friends. Well, when I say "big weekend" I mean I went out for dinner on friday and saturday night and also did a little shopping with a friend on Saturday. My shopping friend was very understanding of my demands of a short shopping trip and for a sit-down chai latte break. She's a medical intern, so she'd want to be, quite frankly.
My other friends (the dinner friends) mostly don't know about my condition. Actually, it was only a few days ago when my housemate JR and I had the loungeroom to ourselves for the first time in ages that I told him. I think I'd been putting it off, I wasn't sure how understanding or otherwise his response would be. I'm ashamed to say I underestimated him. He was very concerned and interested in my explanation.
Anyway, I enjoyed the experience of dinner twice in a weekend with good friends. I'm slowly becoming practised at excusing myself from after-dinner activities like pub drinks or movies. I sitll feel a twinge at not being able to enjoy my friends' company late into the night or early hours of the morning, but am beginning to realise thatI gain more by leaving early - it allows me to see my friends more frequently, and to be able to enjoy a relatively good day the following day. This is a much better outcome that facing the repercussions of one wild night for several days following. Not to mention tiring myself to the point of irritability, deliriousness or worse, to the point of not being able to get myself home without a lot of help from someone friendly.
I don't plan to hide my condition from my friends. I just don't think a big group dinner is the best place for outing myself, so to speak. When I catch friends in ones or twos I will tell them, and the gossip-mill will no doubt ensure the rest know fairly quickly.
Anyway, here's to pleasant weekends, good food and even better company.

More musings on yoga and CFS

2006-08-25T11:32:00.000+10:00

Well, thanks to Mikk, I have been having a look around for some support for my personal feeling that yoga may be beneficial for me, as long as I take it easy and observe my limits. I found two things, a dissertation on yoga and chronic fatigue syndrome on the webpage of the Victorian CFS/ME society, and also a book all about yoga and CFS! How exciting! The dissertation is by a long time yoga teacher who is also a CFS sufferer, Nola Szczecinski. Some of what she said is given below:

"During a particularly busy and stressful time I contracted the Epstein-Barr Virus, which led to CFS. The first remission - after an illness so devastating that I all but lost my life - was brought about through the knowledge and practice of Yoga (plus a very supportive naturopath). At first I could only manage some Pranayama (control of breath), Yoga Nidra (deep relaxation) and a little meditation. I also included positive affirmations. After a few months I began to attend a Yoga class. The teacher was very understanding and supportive and I was able to take my time. I practiced regularly at home, and after six months I was able to keep up in a two hour advanced class."

I was astonished my this find (you can have a look at the page too if you like. Actually the thing I loved most about it was that it seems to illustrate that there are some parts of yoga practice, like pranayama (control of breath) that may be helpful to even those suffering quite severe CFS. It gave me hope that no matter how bad I get, there is something I can be doing for myself, even when I am at my worst. I will definitely persist with my classes and see how things go.

I also found a book on yoga and CFS. It's called 'Beat Fatigue With Yoga: The Simple Step-by-Step Way To Restore Energy' by Fiona Agombar.

Surya namaskara

2006-08-24T15:58:00.000+10:00

Well, I went to yoga on Tuesday. It was quite a sobering event for me, as it made me realise again the seriousness of my physical limitations. I can directly compare how I felt on Tuesday night with how I usually feel when doing yoga. I have always enjoyed the feeling of working with my body, pushing my limits and strengthening and stretching my muscles. On Tuesday night I found it tiring and downright hard work. I found it hard to make my muscles obey my commands for stability and strength, and I found repetitive actions leaving me with jelly-like arms and legs. It was tough reconciling myself with this. Tougher still was Wednesday morning, when I found it hard to get out of bed, and then was totally exhausted by a bath and needed to rest again. I have no doubt that going to yoga contributed to this.

So now I am at a cross-roads - do I continue with yoga and hope it increases my stamina, or do I listen to my fatigue and stop? For me it is an easy decision, to continue, carefully - although only time will tell if it is right, and I do worry about the recommendations of some medical practitioners for total rest and no exercise. I justify the decision on the following basis - I know my body well. I have always done sports, and mostly sports that require acute body awareness. When I was 5 I took up gymnastics, a physically and mentally demanding sport even at a recreational level, and one that requires and helps to teach a strong awareness of your body's strengths, weaknesses and limits. I trained and competed for 10 years, so I had plenty of time to learn this awareness. After that I did a range of sports but settled on diving - another physically and mentally demanding sport that requires a good understanding of your body. So, as I say, I know my body well. I know it's good points, I understand its weaknesses and what stresses it. And I have a very good appreciation of when to push it and when not to, and how to interpret the signals it gives me.

So I will continue with my yoga practice, although I will take it slowly, not push myself to complete everything in the class, and always stop and asana if I feel it weakening me. This is what I did on Tuesday, and although I found Wednesday morning tough, the rest of the day was alright, and I am not feeling too bad today (much better than I have on many days in the past few weeks). Wednesday is now my rest day from work, so that will help with any recovery issues.

I definitely wouldn't recommend this approach for everyone, but I am fortunate not to be too debilitated to undertake some exercise, I know my limits, and I also know the personal importance for me of maintaining a healthy attitude and the way that the mind-body connection works in my favour when I do this.

Multi-everything

2006-08-21T15:26:00.000+10:00

Well, I just got off my chair, walked out of the office, down to the chemist and bought a packet of multi vitamins and minerals, came back, went to the kitchen and took one with a glass of water. So I have started! I am not holding huge hopes for a drastic improvement, but you never know, and this is one of the simplest things I can do to help myself. If nothing else, it can't hurt, especially on those days when I get home tired, my housemates are all out and all I manage for dinner is a cheese jaffle.

Go on girl, help yourself

2006-08-21T14:12:00.000+10:00

I haven't been doing a great job of implementing my strategy for helping myself to cope with my condition. So far I haven't missed a yoga session, but that's because they're held on Tuesdays, and that's tomorrow. I haven't really been drinking any more water than usual, I haven't gotten around to buying the multivitamin I'm planning on taking, and I meditated last Wednesday, but haven't done so since. Mostly I have been so wrapped up in car problems that everything else has taken a back seat. I don't suppose I should beat myself up about it, I'm sure that won't help! But I should get onto it, because if I'm not helping myself, how can I expect anyone else to help me?

Cars, stress, public transport, and CFS...

2006-08-21T09:51:00.000+10:00

I was thinking of getting rid of my car. As you may have gathered, I am not severely disabled by my condition, and at the moment am still able to work and drive. However, I find the drive to work very tiring and was thinking that public transport might be a better solution. In a climate of rising petrol prices, I was also thinking it might be finnancially sensible to get rid of my car if I could do without it, or at least to drive it a bit less. Oh dear, what was I thinking? Clearly this was a product of my warped thought processes, as I confirmed this morning with an attempt to get to work using public transport. See, my car wouldn't start on Thursday. This wasn't a dire state of affairs, I just borrowed my boyfriend's car (actually his mum's, but she's overseas at the moment), which is a convertible SAAB 900 and very nice to drive, so I wasn't too disappointed. So things were fine until I was driving home on Thursday night. In peak hour traffic, on one of Melbourne's busiest roads, the clutch cable broke and the car shuddered to a halt in the left lane. Naturally my stress response went through the roof - one of my CFS related problems - and I felt my muscles start to ache and my head start to throb, and the cold started to make me shiver. Trying to collect myself I rang my boyfriend and explained the situation, he called the RACV (roadside assisstance) and asked them to send a tow truck. Then he came and waited with me. Eventually the tow truck came and we headed home.

The following day (my first day off work, and well needed!) I decided I'd better deal with my car. So I called a couple of mechanics and found a nearby one who would look at it for me. Then my boyfriend tried to start the car, in the hope he could drive it to the mechanic, and the car started fine. And it drove fine to the mechanic's, where the mechanic said "If it works, I can't fix it" and sent my boyfriend home. The car drove fine on the way home too, so on saturday we decided that we'd take my working car to Daylesford, an hour and a half away. Well, we made it ten minutes away from home before the car gave up the ghost. We managed to prod it enought to get it to a petrol station with a mechanic attached, and left it there.

So this morning, I was faced with getting to work sans car. Thinking this would be a good opportunity to test how viable public transport was as a mode of commuting, I rugged up and set off. After the weekend's experiences with cars I was more than ready to ditch mine if it was feasible. I only had to wait at the tram stop about 5 minutes before a tram came. Unfortunately it was so full I couldn't get on. I walked to a different tram stop and had to run for the tram, a very bad idea, especially since that tram was also too full. So I waited another 7 minutes for the next tram, which I was lucky enough to get on. Not that I got a seat. By the time someone left and I did get a seat I felt ready to collapse. I arrived at the train station at about 9am, the time at which I had hoped to arrive at work. The train wasn't nearly as bad as the tram, and I got a seat the whole way. By the time I walked the short distance from the train station to work, I was thoroughly worn out. Guess I won't be selling the car anytime soon!

Doing it for myself

2006-08-17T14:03:00.000+10:00

I am having trouble getting in to see a physician. :( The two really good ones I know of are both booked up until next year! And needless to say I am not willing to wait that long, I really need some expert advice on how to manage this now. But, to stop myself feeling so helpless without the expert advice, I have put together a list of things I should do for myself:

1) Drink lots of water - I've never been much of a water drinker, but I have been getting dehydrated very easily lately. Anyway, it can't be bad for me.

2) Take a daily multivitamin - Well, actually I think what I will take is Centrum, which also has minerals etc in it.

3) Meditation - I'm going to try for at least 10 minutes a day. If nothing else it will help with my anxiety and stress management.

4) Yoga - This is the only contentious one, because I know that exercise is vehemently supported or discouraged by various specialists. I certainly don't truck with the idea of graded exercise therapy, but on the other hand I am not so severely debilitated that I feel I should stop any physical activity, and while I will have to take it easy in the classes, the ones I have in mind are not strenuous and take the "proper" mind-body approach. My boyfriend is going to come along to these two. I thin he'll like the classes anyway, but it will also be a good activity we can do together - he finds it hard that the activities we used to do together he now has to do on his own.

So yay for taking control of my own situation! :)

Paradox - Damned if you do and damned if you don't

2006-08-15T10:40:00.000+10:00

I had a crisis last night. After work I went to a presentation, a great presentation, but it was all too much. I got home ate something and collapsed. I cried and realised that I feel like I'm holding back a flood. I want to stop work and take a couple of weeks holiday to just rest and try to recoup some of my strength, but I'm also terrified that if I stop I will never be able to start again. Sorry, that all sounds very negative and down-in-the-dumps, but right now it's a genuine fear. I feel like I'm damned if I do and damned if I don't. If I don't slow down (a lot), I will literally work myself into the ground, and if I do, I may never be able to start again...

I spoke to my boss yesterday about reducing my working hours. He seemed very understanding initially, commenting "I wondered when you were going to come and speak to me about this". We agreed that initially I will go back to 4 days a week, nominally Monday - Tuesday, Thursday - Friday, to allow me a mid-week rest. But then he asked when I would like to start these new working arrangements. Obviously I said "Immediately" - I've clearly not been coping to date, I left work on Thursday afternoon and didn't come back on Friday because I was still so run down.

This is when my boss failed me - he said "Well, if you're going to start this week, can you take your day off on Friday, because I have a big proposal due on Thursday and I need your help with it". I was so disappointed I didn't really know what to say. Weakly, I agreed. My boss is great usually, he has always been very understanding of my health problems, and his wife has chronic back pain, so I thought he understood chronic conditions fairly well. But that comment just gutted me. I'm not sure if he thinks my condition is not serious (maybe I should tell him that my forearms ache as I lift them to type or operate a mouse), but I'm fairly sure he would never consider a similar request of his wife to be fair - "Mandy [not her name], I know your back is giving you shooting pains all day long and you need a mid-week rest, but can you take your day off on Friday today, Wednesday is just too inconvenient this week".

I wonder if he thinks "Chronic Fatigue Syndrome" means I am just a bit tired all the time. I did give him an information page to explain my condition when I was talking to him... I've never encountered this lack of understanding before. Even my rowing crew and coach understood why I was standing down from coxing over winter - even though all that is involved in my role is to sit in the boat, pull a couple of strings and talk to the guys. I guess all this contributed to yesterday's crisis. I feel a lot of pressure to keep performing (I can't think of a better word, which probably says something in itself) at a certain level. From my boss, even from my Mum to an extent, not that I blame her for not understanding, since she has never seen me at my worst. But then on the other side, I feel pressure from my boyfriend to slow down - especially when it comes to work - to preserve my quality of life. In some ways this pressure is hard to take too and stresses me out, but then I know that he has my best interests at heart. It's just hard to follow his advice when most of the rest of the world is giving me contrary suggestions.

I don't mean to be gloom and doom. I don't want to turn into a negative person who uses her condition as an excuse to grumble (although I do seem to be doing that a lot lately), but on the other hand, I want this blog to be an honest record of my progress and feelings. I am hoping it will reflect this bad stage, followed by a steady improvement, if not in my health (although that would be best!) then at least in the way I manage myself and my condition.

Why was I unexcited about my birthday?

2006-08-13T20:36:00.000+10:00

I don't know... I was woken up in the middle of the night, only a few hours into my birthday, by my boyfriend returning home from his restaurant shift. After a quick kiss I fell back to sleep and woke again in the morning to my alarm, *sigh* work... When I rolled over to turn it off I discovered a big, beautiful bunch of flowers on my bedside table. What an exciting start to the day!
Work was mostly uneventful, except for when I first walked in and all my collegues in my group stopped and stared at me and then spontaneously burst into a round of "Happy birthday to you...".
After work I was back to feeling unenthusiastic about my birthday, bemoaning my situation and generally being a self-pitying sad-sack. This was not helped by a visit to my doctor, who assured me all my blood tests were normal, but that this meant I did have chronic fatigue syndrome.
I didn't feel like going out for dinner, but I thought I should, because if I didn't, I'd just sit around at home feeling even more miserable that I didn't do anything to celebrate my birthday. I came home to a clean-shaven, well-scrubbed boy in a lovely shirt, grinning and ready to go out for dinner. Used to seeing my boyfriend with a 3-day shadow (as opposed to a 5 o'clock shadow), I couldn't help but perk up at the sight of him looking so handsome and happy to see me. Then he gave me my birthday present... A book. But not just any book, The artists handbook. Heaps of tips on painting drawing, and even mosaics. Very exciting to have some encouragement in painting, a nice placid pursuit I can follow without tiring myself out. I first started painting at the end of 2004, when an arty friend stayed with me and left me a book of prints of abstract paintings. I was inspired, but only seriously started painting after I had glandular fever, as something I could do without tiring myself physically or mentally. I still remember times before I went back to work when my internal clock was a mess and I would sit up in the wee hours painting. It kept me sane. But I havn't dome much lately, feeling I had reached my limitations because I didn't know anything about techniques, materials, or any of the other basics. I must have said something about it to my bo sometime, else he's psychic, which I sometimes think he may be... Anyway, his inspired gift delighted me.
With the boy's example to follow, I sprced myself up and we went out to a little african restaurant for dinner. I hadn't had african before and was a bit unsure what to expect, but it was great. Yummy entrees, yummy curries and these funny crepe-like pancakes as an accompaniment. Oh, and topped off with a lovely Shiraz. Yum! I even managed the walk to and from the restuarant. All in all I can't complain one bit about my birthday, and will use this to remind myself of this if I haven't shaken the chronic fatigue b the next one.

Housemates

2006-08-07T19:26:00.000+10:00

My housemates are usually great. They're both good friends and I love them to pieces, but they just don't get it. And I know it's unfair of me to lump this on them, but it really shits me that I'm trying to work fulltime, I have post viral fatigue syndrome that stops me doing anything else (ie anything fun), and when I come home from work, I'm still the one who cooks most frequently. Despite the fact that one of them is a student (yeah, I know that's a tough gig too, I did it for 4 years), and the other one is on holidays. Well... to be fair to the student, she's the other one in the house who cooks most frequently. I'm excluding my6 boyfriend from all of this, mostly because he has only been in the house a month or so and things have been better since he has, and partly because he's away tonight. Tonight I am so devestated. I came home feeling like I've had the flu for a million years, achey, sore, tired and grumpy, and the back door was wide open letting in the bitter Melbourne winter... To add insult to injury, I was really hoping that someone else would cook, and they were, but JR (on holidays) had decided to cook a BBQ, with sausages and lamb chops, neither of which I eat (he must know this after a year and a half of living together). And then I got a narky response from him when I said I was going to cook something else. It's times like this I would rather live by myself and have to fend for myself than live with others who supposedly (but not actually) lighten my load, while creating extra stresses for me to deal with. I know i'm having a good old whinge, but at times like this, even the littlest things are hard to cope with. Plus it's my birthday tomorrow, which I'm so uninspired about because I like a good party but there's no point having one when I'd be the first to leave. But no doubt I'll have more to say on that one later.

Blood tests and diagnoses

2006-08-02T12:30:00.000+10:00

I hate blood tests. I don’t know anyone who likes them, but my irrational fear of needles and the fact I am left feeling light-headed and a little headachy and weak for a day afterwards have combined to bred in me an intense dislike of them. On the plus side, I managed to find a doctor who took my symptoms seriously (“That’s the longest medical history I’ve taken in a long while, I can see why you needed to write your symptoms down”), and who didn’t seem to think I was just depressed or whingeing. Hooray! On the down side, she agrees with what I have long been suspecting, that what I’m suffering is probably chronic fatigue / post viral fatigue syndrome. The hated blood tests are just to confirm there’s nothing to suggest it’s some other nasty. That said, it could be a lot worse. I know of people who are house-bound or even bed-ridden. So in many ways I am lucky to be getting off so lightly, not that it feels like that to me. I guess I just need to concentrate on ensuring I don’t get any worse and ending up in that boat.

Imminent doctors appointment

2006-07-31T16:53:00.000+10:00

I have a doctors appointment tomorrow. I’m a bit nervous about it, but I’m also very hopeful that I may finally find a doctor who takes my symptoms seriously. The last doctor I tried to explain things to scoffed at my suggestion that irritability was a symptom related to the others. She proceeded to also scoff at the suggestion that a food allergy or dietary issue may be at the root of my illness, despite the fact I am very iron deficient even though I eat red meat around 3 times a week. In the end she decided I was depressed and sent me to a psychiatrist who promptly determined that I was not, in fact, depressed at all, and that if I had my emotional ups and downs it was all as a result of being inexplicably ill. So it is with some trepidation that I look forward to tomorrows appointment. But on the whole I am feeling very strong and determined to find a medical professional who will get on board and help me either find a cause of my illness, or else manage my post viral fatigue.

Ebbs and flows

2006-07-26T13:05:00.000+10:00

Today is better than yesterday. By the time I arrived home from work yesterday evening, my legs were so achey I could barely walk up the stairs to my room. I even felt so desperate I rang the doctor to see if I could move my appointment forward, so I at least felt I was making some progress. I had resigned myself to having to call in sick today and miss work to rest. I was reading yesterday about interupted sleep patterns and their affects on fatigue related disorders, and the potential for magnesium and calcium supplements to help, and it reminded me of the Salvital that used to help with the muscles aches last year when they were bad. A quick look at the ingredients on the tin, my suspicion that magnesium salts were included was confirmed. So at bed-time, when I thought a repeat of the previous night was inevitable with my twitchy legs waking me every time I reached the cusp of sleep, I decided to test the theory. Trying to decide order to drink them in, I prepared a galss of Salvital and a glass of milk (Salvital has tartaric acid in it so I was a little concered it might curdle the milk in my stomach and make me feel ill). In the end I went for Salvital first and followed with the milk, but I don't think it would have made a difference. Whether it was the Salvital and milk, or a stunning example of the placebo affect, sleep was easier than it had been the previous night, and while I still feel pretty attrocious today, it is not a patch on yesterday's zombie-like state. I even felt just well enough to go to work. I will try again tonight and hope it helps some more...