Thursday, March 29, 2007
Why nana's have a seven day pill box
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!
Labels: CFS, chronic fatigue syndrome, medication
Posted by Ellie at 9:15 AM
Friday, March 23, 2007
Telling people - I'm trying it!
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.
Labels: CFS, chronic fatigue syndrome, explaining
Posted by Ellie at 2:50 PM
Thursday, March 08, 2007
"I'll see you there and we'll have a dance."
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.
Labels: CFS, chronic fatigue syndrome, limitation, understanding
Posted by Ellie at 1:31 PM
Thursday, March 01, 2007
Working with CFS
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.
Labels: capability, CFS, chronic fatigue syndrome, limitation, work
