Today is ME awareness day. Or this week is ME awareness week. Or possibly both, I’m slightly confused. Confusion (cognitive difficulties) being one of the problems that affect people with ME.
ME is an invisible disease. Often inaccurately called Chronic Fatigue Syndrome, (CFS) especially in the USA, it is a lot more than just chronic fatigue. ME stands for myalgic encephalomyelitis. Myalgia means muscle pain and encephalomyelitis means inflammation of the brain and spinal cord. The symptoms are many and harsh. Crippling fatigue, headaches, dizziness, loss of balance, nausea, irritable bowel syndrome, muscle pain, joint pain, cognitive problems, and all sorts of other unpleasant things. Any activity results in a massively disproportionate payback. Walking to the shops can cause leg muscles to lock up, go solid and produce agonising pain. Standing in a line is difficult because of pain and dizziness. I’ve written more about this in my blog post What is ME? and I also described how I struggle with waking up in A morning with ME.
ME varies a lot too. I have been so ill as to be housebound or bedbound through much of the last eleven years, but I have also been well enough to work for a reasonable portion of that time. Of course “well enough” is relative, as while I might have looked fine at work (and sometimes I didn’t, to the consternation of my colleagues) I often collapsed in bed as soon as I made it home and was able to do nothing until going out to work the next day. Today I am going to go out for a meeting which is the other end of an hour long motorbike ride. Two months ago I didn’t have a hope of even getting on the bike, but at the moment I can as long as I pace myself, and even then it will hurt tomorrow.
People with ME look well because unless you visit them at home, you only ever see them on a good day, when they have mustered the strength to venture out. That is why the illness is invisible. Spend any length of time with an ME sufferer and you will notice signs of exhaustion creeping in. Visible wilting, muddling of words as brain fog takes over.
Earlier today I was sent this video made by @daisydinosaur_, I think it is a good summary of the problems that we face.