Lucy
(2000)

CFS & Me: Here's my story...

I was diagnosed as suffering from Chronic Fatigue Syndrome in October 1999 following several months of mystery illnesses and general lack of wellness.

It all started back in the spring of 1998 when I was knocked down by a bout of Glandular Fever. It couldn't have come at a worse time: there I was, busily preparing to launch a new business with three colleagues, and all of a sudden I'm stuck in bed for two months, unable to even make myself a cup of tea, let alone undertake anything more strenuous. Truth be known, though, I probably went back to work too soon. Over the next few months I seemed to be ill all the time. If it wasn't a cold, it was extreme tiredness, then a bout of flu...and so it continued. And on top of all that, I got the distinct impression that they were getting so fed up with seeing me every other week at the doctor's. I mean, surely there's only so many times you can be told "it's a virus".

Things ticked along in a similar fashion until August 1999. At this point I found myself in my usual seat in the doctor's waiting room, wondering what 'diagnosis' I'd be fobbed off with this time. As it turned out, the doctor managed to pinpoint the problem to gastric flu. The antibiotics I was given made me feel absolutely terrible, and as a result I ended up spending the majority of my time tucked up in bed either gazing past the TV and its never-ending diet of soaps, talk shows and tips on home improvement, or (More often than not) fast asleep for hours on end. Ah, what fun...

After a couple of weeks, I went back to work, determined as ever to get healthy, get more sleep, avoid getting ill again and catch up on the backlog of things to do that had mounted up whilst I'd been away. Easier said than done...The month of September brought with it a heavy schedule of business travelling commitments, all of which were completely unavoidable. One minute I was in London for a day, then Birmingham, then Dublin, then back to London, then Cork, then up to Manchester...then everything came to an almighty grinding halt again at the end of the month when I woke up one morning to find that the room was spinning and I just could not move. And all the doctor could say was...you've guessed it..."it's probably a virus...you just need to get plenty of rest". By this point though, I was bloody sick of resting. It seemed to be all I ever did! Still, I did as I was told.

This would have been fine, except that instead of seeing an improvement in my health, I actually seemed to get worse. Where I had been sleeping for a good 8 hours a night, 8 hours soon became 10, 10 became 12...until it actually reached the point where I was sleeping for anything up to 20 hours in one stretch. And when I was awake, I was neither use nor ornament - I seemed to be going through life in a complete daze, which felt something akin to looking down on myself having been shoved in a sock so everything came at me all muffled and blurred. I can't say I recommend it!

There was no way in the world that I could have even considered going back to work. And my doctor's advice did me no good whatsoever. The worst thing about it was, firstly, not being able to pinpoint exactly what was wrong; and, secondly, not knowing what on earth to do about it. So in a pretty much last-ditch attempt to get some answers, I went to see another doctor. Who told me it was stress. Now, I am normally a very calm person who has virtually no temper at all to speak of, but the sheer exasperation of the situation brought it all to a head. The result was me, sitting in the doctor's surgery, crying my eyes out and shouting "how the bloody hell am I supposed to be stressed when I spend all my time asleep for Christ's sake?!!" I still believe that had I not made such a fuss, the chances are I'd still be lurching from one illness to another to this day. I mean, what happens when you reach the point where you start sleeping for 24 hours a day? Let's face it, at that time, I wasn't too far off it.

And so began the rounds of blood tests, urine tests, poking about tests and all the rest of it. Diabetes? No. Underactive thyroid? No. Glandular fever again? No. They even did an HIV test, and that was negative too. So finally the diagnosis of CFS was made, although I'm still not sure how far that decision was based on scientific fact rather than desperation at not being able to arrive at a sensible, easily definable, 'bonafide' illness.

It's hard to explain the relief at finally being able to say "this is what's wrong with me", rather than have to waffle my way round the issue by reeling off a list of symptoms. And having a diagnosis to hold on to helped me achieve more of a focus than I'd had in months. Finally the prospect of getting better wasn't just a pipedream - it was a real possibility.

It was also comforting to know that what I was suffering from was a physical problem rather than a mental one. There had been times when I'd started to convince myself that, this was it, I was finally beginning to head towards insanity. But then that's hardly surprising when I was spending all day every day alone, in bed, and drifting in and out of sleep. I couldn't help feeling that life was just passing me by and I was missing out on so many things. And getting depressed about it was really a foregone conclusion I suppose.

My treatment consisted of a) Prozac, and b) lots of rest. I was quite apprehensive when the doctor told me that Prozac was the best medication for me to be put on, as I'd heard all sorts of horror stories about it, and I thought that the idea that one pill could solve all my problems was a fairly dubious one. To be honest, though, I was more than prepared to give it a go. And I'm so glad I did! After one month on the Prozac and taking things very slowly, I began to notice a real improvement. My energy levels gradually began to improve, and my whole outlook on things started to get more positive by the day. By the end of November I felt well enough to go back to work, albeit on a fairly ad hoc basis. At last, it looked like things were beginning to get back to normal.

From then on it was really a case of working things out for myself. I soon came to realise what my limits were and where I had to draw the line. I found that be setting myself tasks on a daily basis, I could get through the week far more easily. And by gradually increasing the number of items on my daily "list of things to get done", I found that I could put an almost tangible figure on my levels of strength from week to week. Things were looking up!

You might be wondering what effect CFS had on me in a broader sense than just from a health and wellbeing point of view. This would be a good point to talk a little about work. I am in the very fortunate position of being a director of a recruitment consultancy. Although it is only a small company (6 employees), and so when one person is missing from the team their absence really notices and puts a fair strain on everyone else, it is also flexible enough to be able to work around certain situations in a way that a larger organisation might perhaps not be able to. At first I was really worried that I could lose my job over this - let's be honest here, you can't expect any employer to pay indefinitely for someone that's never there - but I needn't have worried. They provided me with a PC to use at home, both for work and for the magazine (The Satellite), because they appreciate the fact that people have interests outside of work and that the company should encourage that. This meant that when I was feeling up to doing some work, I could potter about for awhile, and then rest for however long I needed to. Having such understanding colleagues was definitely a factor in my return to health, although I did start to feel almost guilty because they were being so very good to me.

Now it's March, and although I'm just coming out of a bit of a bad patch again, I'm feeling so much better than I have for months. I've learnt to pace myself; to manage my time. I've learnt to set myself rewards, if you like, so that I've always got something to look forward to. I've also learnt not to worry about things that I can't really do anything about. It's become a question of priorities - and I can't have my work life sorted out without having some aspects of my social life sorted out too. I know now that if I've had a relatively easy day at work, I should make the most of that evening to do some work on the magazine. Likewise, if I've had a busy day at work I need to spend the evening chilling out - maybe in front of a video, or having a nice aromatherapy bath (I swear by lavender and grapefruit oils). And I've been reminded above all that good friends and an unbelievably supportive and loving partner are so, so important when you're going through something as hit-and-miss as this.

Don't get me wrong, I'm not saying I've made a full recovery or anything. I'm simply saying that I take whatever life decides to throw at me and play it all by ear. It's all you can do really. And I'm sorry if this account just comes across as a big long list of ailments - unfortunately, that's just precisely what the last few months have been like. But where once I felt like I was freefalling into an ever-deteriorating situation from which there was no obvious means of escape, there's now more and more light at the end of the tunnel, and that's good enough for me.

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