Missing More after graded exercise therapy is a series of posts from the perspective of people with ME for ME Awareness Month (May). If you have a story to share about exercise and ME see this post for instructions about how to contribute.
Sometimes we hear people say that the harm caused by graded exercise therapy must be because patients don’t follow instructions, perhaps they push themselves beyond the advice or the advice is passed on incorrectly. The personal story that Clark tells here is important because it illustrates that even carefully following the protocol from a NHS specialist does not lead to safe treatment.
The first time I knew for sure that something was wrong was after a swim. I was a regular swimmer, I was fit and in the prime of my life. I’d had a persistent sore throat for months but doctors couldn’t figure it out, so I just got on with it. A good swim always left me tired, but in a good way. This time, by the time I got to the changing rooms I knew something was very wrong. It was a body-broken tired.
The one other person in the changing room confirmed it wasn’t just me, asking if I was alright. I didn’t know, but I said I was okay, and half an hour later I had managed to get home. As soon as I got in I collapsed across the dining room chair, my torso on the seat, head lulling over the edge. I couldn’t move. I could barely breathe. My speech was slurred. My wife – we were only recently married – was going crazy with worry and I had to talk her out of calling an ambulance.
For the next year all I did was struggle to work, come home and go straight to bed from 18:00. I rested every weekend and used all my holiday leave for rest too. I had been exceptional at my job, won awards for my work, but my performance dropped significantly to the point where I was barely keeping pace with minimum expectations. I went to the GP a dozen plus times over this period, had loads of standard blood tests that all came back normal. Eventually my GP said she thought I had ME and referred me to an NHS specialist.
The specialist diagnosed me straight away, said it was definitely ME. She was a GP with a special interest in ME and she was decent. She was surprised I had managed to keep working and signed me off work for two weeks. Two weeks became a month. Then three months. Six months. A year. That was six years ago.
In my first few weeks I was given CBT. It was a bizarre waste of time. Then I was given graded exercise therapy (GET) – again, under the NHS clinic’s trained specialists. I raised concerns because walking from the car to the clinic had been very hard in itself, but was assured that it was safe. Ultimately, I wanted to believe them because I wanted to be able to get well so simply and I missed exercise so bad anyway. So I did exactly as instructed, starting with just 5 minutes on an exercise bike on the lowest resistance setting. At the end of those five minutes I felt okay, I could have continued. But I stopped as instructed. The next day things were very bad. I couldn’t believe that that small amount of exercise had done this to me. But it did and I never recovered from it.
I stopped the graded exercise at that point, it was physically impossible to continue anyway. I feel very angry about this having since read the papers myself, such as PACE and seen that the claims made are not backed up by evidence, and evidence of harms are buried. My NHS clinic subsequently discharged me following the failed GET, saying there was nothing more they could do for me.
I very much got the impression that I was a fact they wanted to bury. They wanted me off their books, off their list of responsibilities, so they could continue giving GET to others without having to acknowledge the harm they had caused me.
I have spent most of my time housebound since. I have lost my masculinity and found that society does not value physically weak men. I have a four year old daughter who I play with for five minutes in the evening if I can manage it, which I often can’t. My wife is my carer. I lost my career and the family income. My health trend is one of continual decline. I have to avoid activity, yet I am bombarded by symptoms and distractions are my only relief. I distract, like writing this, and then pay a disproportionate price.
This story was first shared on http://stories.meaction.net/2015/11/10/graded-exercise-therapy-ruined-me/
If you found this post interesting, read our series of posts about Missing More After Graded Exercise Therapy.
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