Today is the International ME Awareness day, and May is ME awareness month. One of my goals is to be more active in the patient community, but I often find it difficult to formulate and get across my opinions and even factual information the way I want it to sound. I lurk on forums and blogs because I find it difficult to write something I want to share fast enough (yes I know, other people wont feel that way). I’ve written before on how difficult information gathering and fact checking are now.
It’s a difficult illness to live with. I got sick with a series of infections in 2008 including swine flu and pneumonia, and unlike any other time I have been sick I just didn’t get better again. I managed to slowly get back to work almost full time again but that meant working at least two days a week from home, and not having any social life. I stopped pacing my activities so rigidly and when I got a new series of infections a year ago my ME flared something awful.
Right now I’m somewhere in between moderate and severe which means I’m mostly housebound. I manage to sit up during the day, but I’m in bed at least 14-16 hours a day and doing simple things like vacuuming makes me exhausted and in pain (I did that today, and had a blood sugar crash, wohoo).
I still feel lucky though. About 25% of ME sufferers are severe/very severe, and what they have to go through is something I wouldn’t wish on anyone. I also think a lot about young people with ME. At least I got to do all the stuff young people are supposed to do before I got sick.
There is biomedical research under way that holds hope for finding illness mechanism and even treatment options. The internet community is organising, and soon or later we will manage to shame the people that sits on the funding enough to pay up.