”
It started with a level of exhaustion that simply wouldn’t go away. I cut back my working hours, gave up my hobbies and said ‘no’ to everything, but nothing helped. I began struggling to stand, often felt dizzy and had to eat almost every hour to counteract the shaking in my body. When I became completely unable to work in March 2022, I could barely walk. During those first few weeks, I couldn’t even make myself a sandwich. It was incredibly distressing.
I ended up seeing all kinds of doctors and specialists. They ruled out various conditions and carried out numerous tests, but no one recognised ME/CFS or orthostatic intolerance. Eventually, I was given the label of medically unexplained physical symptoms (MUPS), and as far as they were concerned, that was the end of it. But it didn’t feel right to me at all. During rehabilitation, I learned to recognise my limits better, but I also realised that if this had been temporary, I should have recovered by then. Something was missing from the picture.
It was only when I read other patients’ stories about ME/CFS online that everything fell into place. The loss of function, the PEM, the brain fog, the orthostatic symptoms — it all belonged together. I realised: I’m not ill because I’m exhausted; I’m exhausted because I’m ill. When I was finally diagnosed, it was both upsetting and a relief. At last, there was a name for what had been going wrong for so long.
My health has continued to deteriorate over the past few years. I spend more than twenty hours a day lying down, including over thirteen hours in a low-stimulation environment. Everything that once came naturally has been replaced by rest, quiet and strict limits. Instead of strong legs and good physical fitness, I now rely on a wheelchair and have a body that can tolerate very little. I have come to accept this, although it is a huge contrast with the way I used to live.
I’m very glad I took part in the NMCB study. There is such an urgent need for greater understanding of this illness, how it is diagnosed and just how far-reaching its effects can be. Perhaps one day, something will be discovered that will enable us to truly recover. Until then, I’m the mother who lies on the sofa and in bed. But I’m still here. I still have value, just in a different way.”
