I have Chronic Fatigue Syndrome and orthostatic intolerance. CFS is an illness that tends to get worse unless it is diagnosed and you learn to stop trying to live your life the way other people do and start taking care of the illness. There are people who have it who can lead completely normal lives, and there are those who can’t even get out of bed. For me, I was diagnosed very late, and so I can’t work anymore. I can still get out of bed and do quite a few things for myself, so I still count myself lucky.
The symptoms of CFS are common for a lot of other illnesses, making it hard to diagnose. Exhaustion. Fibromialgic pain during flare ups. Inability to recover from exercise. Feeling ill during pressure changes. Loss of cognitive function, often called brain fog. For me, that means planning my day so I don’t do too much at once. It means living with my parents so they can take care of me. I try not to commit to much of anything, because I don’t know when the next flare up will be. I keep track of every ounce of energy, take many pills and try to find things that I can still do while sick, so I don’t feel worthless. Things like crochet, art and computers have kept me sane.
Novel Patient