This year I was finally diagnosed with Chronic Fatigue Syndrome. I don’t usually tell people because, from the outside, I appear to be fine. I am, in fact, getting better and better, and am hoping that in a few months, maybe sometime next year, I will feel normal. Well, as normal as a woman in her very very late forties can feel!
I had a very stressful marriage which ended in 2002. At the time I left my husband, I had returned to university to embark on qualification as a solicitor and I had a six year old son. For a while we slept on the floor and a camp bed in my mother’s house. I juggled essays, dealing with a very messy divorce and looking after a confused child and seemed to manage. In fact, each of those things helped distract me from the others! I never stopped or rested and I think now that I existed on adrenaline.
Four years later I qualified as a solicitor. I had gone into criminal law which is one of the worst paid areas and one of the hardest on one’s health, entailing 24 hour police station duties and long, often draining days at court. That December was the first time I took time off work with exhaustion. I saw it as a personal failing. For the next couple of years I struggled through different jobs and wondered why my head wouldn’t work when I sat at my desk. I finally took to my bed the day after a flu jab in autumn 2008. I just couldn’t go on any more. I later found out that vaccinations can be one of the triggers that, combined with the kind of burnout I had experienced, can lead to full blown chronic fatugue or ME.
For six months I struggled through, spending most afternoons in bed. My son was having a terrible time at school, suffering from crippling migraines amongst other things. It was a relief when I took him out of school to be educated at home, for many big reasons and also for small ones such as the fact I didn’t have to get up so early in the mornings!
It’s not just tiredness. The fatigue is crippling, for me feeling as if I have a heavy weight on top of my head. I had unexplained pains in my arms and legs, and particularly my hands and feet. A constant sore throat. I found it very hard to tolerate cold and if my feet got cold the only thing that would warm me up was a hot bath. But the worst thing is brain fog. That’s just what it feels like: as if your head is full of cotton wool, or perhaps even steel wool which is less comfortable, and your thinking doesn’t work. Thoughts won’t form, words won’t come.
I tried so many different things and read so many books. Two of the most significant, I feel, were practising yoga and giving up caffeine. Gradually, gradually, I started to feel a bit better. Having the school trauma out of the way helped to reduce stress. I managed to start exercising again. I had enjoyed running before and really wanted to be able to do it regularly again.
Over the next 18 months I managed to get myself to the point that afternoons collapsing in bed were much less common. I kept on working part time on a freelance basis, knowing that I would be unable to work full time and vaguely realising that stress had played a big part in my illness.
Earlier this year I was persuaded to stop working for a bit. As well as being responsible for my son’s education, I look after my disabled mother and I just had too much on my plate. If I was going to get completely better, I needed a bit of time and space and not to be so overwhelmed. So I followed the suggestion.
I went to The Optimum Health Clinic in London, started by Alex Howard who recovered from ME having suffered for several years. I met quite a few people who were fully recovered and learned that, although what I have is certainly a physical illness, there are changes I needed to make to my lifestyle, and psychological tools I could use, in order to allow my body to heal fully. It’s seven months since I started my treatment and I am definitely much better. I had got to the point where I could do most things but had shorter days than most people, needing a longer rest in the morning and a few quiet days after a busy day. Every now and then I would be driven to my bed for an afternoon to recoup. These days that hardly ever happens. I am enjoying life more, living more in the now and doing a lot more things. I am optimistic about the future and looking forward to starting work again, although I now plan to try and fit this round my home life and to be self employed so I can be in charge of my time.
I think the NHS is wonderful for most things but I am so glad I went elsewhere for treatment. Having had blood tests done by my GP many times to try and find what was making me feel so ill, I eventually asked to be referred to the local Chronic Fatigue and ME Clinic, just to get the diagnosis confirmed. The consultant told me that I probably did have chronic fatigue, not to exercise other than walking and that I shouldn’t have “airy fairy” ideas about a complete recovery. I am so pleased I already knew a number of people who have completely recovered and that I knew about listening to my body and doing the amount of exercise I felt up to. For me – and everyone is different – exercise has been vital to my recovery and I am sure that I would not have made so much progress without it.
I’m not there yet. But then I will be a work in progress until my last day. I am happily looking forward to better health than I have ever had. Although I am nearly 50, I now know a lot about looking after myself, about enjoying the here and now and the danger of too much stress. It’s taken a while to learn those lessons, but I intend to take full advantage of them!
