ephemera

ok so in 322 words or less — because really it is not that interesting and i don't want to spend too much time on it :

fifteen years ago i got really really sick and they did tests and told me i probably had lupus and then i cleaned up my act, started looking after my-so-called-self stopped drinking and smoking weed and then they told me i probably didn't have lupus after all but i didn't feel well and they said they didn't know what it was and so began a fifteen year trajectory of seeing doctors and tests and not getting any further until six months ago after a whole load of tests and scans and vitamin injections and pills, a doctor said : like 100,000 other people in the netherlands, you have CFS.

CFS is like a non-diagnosis of a non-disease, it is in effect an admission of defeat for the medical profession, and there is no cure or treatment. you just have to manage it and i can be grateful that it's not as bad for me as it is for some people (see the documentary 'unrest' on netflix). nonetheless it has gradually got worse over the last fifteen years. in my case the main features are : extreme fatigue, pain in muscles and joints, headaches every day, tinnitus, sensitivity to noise, mood swings, the feeling that you are about to come down with a cold or flu as if the immune system is reacting to something but you don't get the cold or flu, in fact i hardly ever get colds or flu and i can't help but wonder if it also, weirdly, protects me from COVID19 :p

i accept this suffering — if that's what it is, some days it seems more in the realm of discomfort and other days it is close to unbearable — as something i just have to deal with and accommodate and manage. i have better days and worse days — and most of the time i am still more or less able to do what has to be done.