It’s now two years since I first developed Chronic Fatigue Syndrome (CFS) or as it is more often known ME (Myalgic Encephalomyelitis). And I can honestly say it has been the most frustrating thing that has ever happened to me.
Back in the summer of 2009, I was happy and content. I’d just got my degree in Pharmacy and achieved the marks I wanted. It’s hard to believe that happy confident young woman was me, she feels like a different person. I took my health for granted, I had no idea that it was about to be snatched away from me. That summer I started my final year of training in a local hospital and I loved it. It was hard work as I had to study as well as working full time, but it was very rewarding, and I was happy.
Then, in late December 2009 I went down with ‘flu and I never recovered. Or at least that is how it seems to me. It is as if I got stuck in that phase when you’ve got over the illness but you haven’t yet gone back to normal. The point where you are weak and tired and debilitated, but not actually ill. This is far from a scientific definition, more my own personal one, but many people with CFS/ME will know what I mean.
Two years later and somewhat improved from those early days of illness, I’m looking back and thinking about all that I have learnt and been through in the last two years. This brings me back to my original point – frustration.
I was a very independent young woman. I was happy to go out and about on my own, and one day I could no longer do that. I was stuck at home, unable to leave the house and barely able to look after myself. I relied on my husband heavily and that frustrated me. I was no longer able to cook, something I missed terribly. I could just about wash and dress myself most days. The loss of my independence was a huge shock, and the frustration of not being able to do what I wanted was very hard. It was as if I had suddenly turned into an old, frail woman, almost overnight. And I had skipped from 27 to 90 without living the years in between. I could never have comprehended it if it hadn’t happened to me and I was angry and frustrated at losing my youth and energy. My career was slipping away from me, my body had given up almost entirely, and it was an effort to stir from the sofa or my bed. Almost worse than the frustration, I was too tired to even be bored. Normally sitting at home with nothing to do would have driven me mad with boredom. But now even watching the TV was exhausting. As the months passed I made slow progress, each tiny improvement took weeks, and the frustration at my slow improvement ate at me. And through it all I knew I wasn’t going to be able to sit my professional exams in the summer and qualify as a pharmacist. I was helpless; I had lost control of my life.
Ultimately, I think it was the loss of control that made me so frustrated. But with a bit of help and advice I began to take back a little control wherever I could. I began to make short lists of things to do. Initially I’d list three or four things to try and do in a given week. And to begin with they were very small things, things that were barely things to be done at all. Things like – walk to the end of the road (100yards at most), put one load of washing in the machine, make an appointment to see the doctor, put new batteries in the TV remote. And those would be my aims for the week. It seems ludicrous, but the satisfaction of ticking off those little tasks was enormous. I felt more useful and less useless, and importantly less helpless and frustrated. With time they became more significant tasks and the lists became daily lists with more and more things on them.
Although this was very helpful, I still struggled with feelings of frustration and helplessness. Then one day I had a revelation. I had to stop comparing how I was now with how I was before I had CFS, because I would inevitably fall far short of how I used to be. Such comparisons were bound to be negative, and make me unhappy. So I stopped comparing my CFS self with my old self and instead made all comparisons relate to my worst point of my CFS. Thereby making all comparisons positive instead of negative. This alleviated my frustration a lot and allowed me to see I was improving, rather than always seeing that I was worse than I used to be. It was a big step forward.
I’m not going to pretend I don’t still feel frustration, I do, regularly. But it gets me down less, and the degree of frustration is smaller. I have no doubt that this is in part due to feeling quite a lot better than I did two years ago. But I think adjusting my thinking has helped me a lot as well.
‘It is hardly possible to build anything if frustration, bitterness and a mood of helplessness prevail.’ - Lech Walesa
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