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March 8, 2005
Chronic Fatigue Syndrome is Du-u-ull
Oh how I hate having a chronic condition. Yes, it’s great because it’s not going to kill me, but I’m never going to be free of it. Or at least that is how it feels. When I was diagnosed about five years ago my neurologist said that in about two years I would be totally clear and never have to worry about it again. Oh how I wish that were the case.
Yesterday when I got into work I felt awful. I felt so down, I just wanted to go back to bed and stay there and wake up in the summer. It has been suggested to me on a number of occasions that hibernating would be an excellent plan. Slowly the day improved and I felt the black cloud over my head receded.
My friend R invited me to a party on Saturday night. I really want to go, but at the moment I find myself really tired at weekends. It seems that I can either go to work and rest all weekend, or go to parties at the weekend and not go to work. Much as the latter is preferable, I have to be practical. I want to go to the party. I feel like Cinderella. Part of me wants to take the risk and go, but part of me can see me on Monday morning dragging myself out of bed feeling like death.
Today I was feeling quite a lot better than yesterday thankfully. After lunch I was sent out on a job on the other side of my small rural town. What follows is the conversation I had:
T: So, you can go on your bike.
Me: I’ll walk
T: It’s too far to walk, you need to cycle.
(I actually considered lying at this point and saying my bike is broken, but plumped for honesty)
Me: I can’t cycle at the moment, my energy levels aren’t good enough yet.
T: (displays puzzled look) ok
Me: I’m quite happy to walk, I’m quite capable of walking, I just can’t cycle at the moment.
No one seems to get the fact that it doesn’t just get better and go away. It’s always there, hovering over me like the afore mentioned cloud. In everything I do I have to consider how I am feeling emotionally and physically. Sometimes it’s almost non-existent, but sometimes it takes over completely and I have to surrender. Coping with CFS on a day to day basis is something that at times I barely notice. But if I dissect my life, I can see that every single day there are small things I do to maintain my health. It’s such hard work.
Now, after that rant, I’m going to slump on the sofa and watch TV. I have a headache. Typical!
Posted by Sleepy Sal at 11:47 AM | Comments (0)
March 2, 2005
Chronic Fatigue Syndrome on a Tiring Wednesday
Hello and welcome to my world. It’s a slightly dopey one this evening because it was press day at the newspaper where I work. Busy is not the word! Anyway, I ought to introduce myself properly…
Well, there are many things I can say about myself. I am small, noisy, political, a writer, a photographer, a musician and I have chronic fatigue syndrome. I was diagnosed five years ago by a very nice neurologist. Before that I had spent 18 months lying on a sofa in my parents’ house watching the world pass me by. I had gone from being an undergraduate student living independently at university away from home, to being dependent on my parents for everything. My symptoms (and this is by no means an exhaustive list) included: fatigue (ok, that’s an obvious one), irritable bowel syndrome (not sexy), period pain (not sexy either), loss of balance, vertigo, anxiety, depression and the ability to catch every bug that was going round.
During that rather dull 18 months, leaving the house entailed a wheelchair and a willing pusher (mostly my dad, poor sod, I gave him a very hard time). The loss of independence was nearly as debilitating as the condition itself. Between daytime television and being pushed round town I was a regular at the hospital, having tests galore. There is no orifice in my body that has not been investigated by a doctor with a very long telescope… and the less said about that the better. I also had the misfortune to endure a week as an inpatient. There is nothing more frightening than having a group of doctors at the bottom of your bed looking confused while every test comes out negative, you continue to get worse and nothing they do helps.
So, after many tests, two gastro-enterologists, a haemotologist, a surgical team (who didn’t operate), three GPs, several sympathetic nurses, a handful of unsympathetic ones and a neurologist I finally had my diagnosis. In all honestly I was tested for everything else (and I do mean everything) and frankly there was nothing else that could be wrong with me.
I started a course of anti-depressants and physiotherapy and within six weeks my life was transformed. I think one of the most wonderful things was knowing that (a) I wasn’t going to die and (b) chronic fatigue syndrome is treatable. When I say transformed, I don’t mean I was 100 per cent fit, but I was on my way. I was walking again, talking on the phone and venturing out without my mum and dad looking after me. My independence was once more becoming a reality.
Slowly I began to regain my strength and I went back to university to start a second degree, which this time I finished. There were of course set backs, as I knew there would be. Depression at times, fatigue, anxiety, but the last five years has seen me really improve physically and emotionally. I’ve learnt what is good for me and what is not.
What inspired me to start this diary was the fact that just before Christmas I began an insidious slide into the first serious relapse of my condition. I have been working as a journalist since June, my first proper grown-up job and this came at a very bad time. I was off work from the middle of January until just last week. It was utterly terrifying. I had images of losing my job, my home, my independence all over again. But, difficult as it was, I have slowly started to rebuild once more. I am lucky in that I know what I need to do to get better and luckier still that this time it only took a few weeks to get back to relative normality.
So, here I am, home from work after a long day. I’m tired, but capable of writing this. Things aren’t so bad really!
Posted by Sleepy Sal at 12:43 PM | Comments (0)
