Tuesday, October 31, 2006
Whispering over the noise
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).
Posted by Ellie at 1:50 PM
Friday, October 27, 2006
Audiobooks
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!
Posted by Ellie at 8:37 AM
Thursday, October 26, 2006
All those little things...
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.
Posted by Ellie at 1:23 PM
Monday, October 23, 2006
The good things about having CFS (there aren't many)
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.
Posted by Ellie at 3:20 PM
US ban on Vegemite
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).Posted by Ellie at 9:04 AM
Friday, October 20, 2006
Row, row, row your boat gently down the stream
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...
Posted by Ellie at 11:00 AM
Thursday, October 19, 2006
Juicy fruit.
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.
Posted by Ellie at 4:56 PM
Wednesday, October 18, 2006
Here comes the sun and I say it's alright...
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?
Posted by Ellie at 11:20 AM
Friday, October 13, 2006
Quotable
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
Posted by Ellie at 8:54 AM
Wednesday, October 11, 2006
When I am rich
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. :)
Posted by Ellie at 7:15 PM
Tuesday, October 10, 2006
Listen to your body as well as your doctor
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.
Posted by Ellie at 3:37 PM
Monday, October 09, 2006
Thanks to all those out there who read this and write their own stories.
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.
Posted by Ellie at 10:18 AM
Friday, October 06, 2006
Can antidepressants help with CFS? Or not?
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.
