Loss

Disability and illness

I listen to stories, as I can’t read books anymore due to the mental fatigue that comes with many chronic illnesses. I used to be a real bookworm, almost always had a book with me, and read several books per week since I was five… It’s a huge part of me that’s just disappeared, and I miss it so much. Listening to audiobooks help though, it’s almost like when you were little and your parents read for you. I still miss the reading though, it’s not completely the same. 

Another part of that is my studies. I was at law school when I got diagnosed with ME and fibromyalgia, and even if I tried it became impossible to continue as I got worse. I would have started my last term in a month, and graduated just before my 28th birthday. Just thinking about it makes me want to weep. It’s like an open wound in my soul, and I try to not think of it. 

I tried so hard though. I forced myself to go to school even when I was so tired and in so much pain that I almost threw up on my way to school from the tram stop.  (I didn’t have any pain medication at the time, as the doctors thought that I was ”too young”. Too young for pain relief. I’d like to hit them all over the body with a baseball bat and then deny them pain medication and see how they like it!) The last straw was when I cried of exhaustion already on the tram TO school, and didn’t know how to go on. I asked for advice in a support group and they told me to get on sick leave before I drove myself to get even worse. You can’t keep pushing yourself with ME, it only makes you worse. 

Imagine when you have a really bad flu. Then push yourself by going to work/school, the gym, keep the house clean, keep yourself clean, etc. The effect is the same as with ME: You get worse. With ME, that might be permanent.

That was in December 2013, seven months after my diagnosis. In May that year, I walked 10 km with the dog. By January 2014, after an exhausting Christmas and the time for my body to relax after all my pushing, I was unable to walk even 50 metres. I tried, and broke down in convulsions and fever, basically unconscious for several hours. After that, I listen better to my body.

I still push myself too often, and I pay the price, although not as hard a price as that time. It’s like a kind of hangover, but with the added pain and exhaustion of fibromyalgia and ME, and it goes on for days or weeks, or even months or years! I still can’t walk further than 50 metres on a good day in the summer, 20 in the winter.

These losses, how my body and mind fails me… My illnesses might be invisible, but they still make a huge impact. Not only for me, but for my whole family.