The first few years were the worst. People were coming back from holidays, going back to work, starting new school years, getting on with their lives. And I was at home, in bed. Going nowhere, doing nothing, watching my normality drift away. Feeling like a total failure. A let down to my family, myself, and my colleagues.
Now, I have no expectation of a return to full time work, or an active life. My children have changed schools. They don’t remember the old ‘normal’.
We all accept that I need to sleep, to have my feet up, to use a stick sometimes. Nobody blinks as I down painkillers, have a little old lady rug over my legs, or get out of bed in time for the girls to come back from school at 4.30pm. I usually have a hot water bottle to my back. I shocked the post man the other day because I was dressed, with make up on, at 2pm. He’s not used to that.
I have brain fog, causing real difficulty in thinking, or even remembering the simplest things. There are days when my head is spinning so much that I can’t get up, like a hangover but without the preceding fun. Moving in the bed can be difficult; sitting up an impossibility. At times my body is so exhausted I can only blink one eye at a time. Driving is a real challenge. I never want to socialise, but am always glad when I have.
I make big efforts to be positive, to not focus on the negatives of my condition. I know that the bad times come and go. I do far too much when I have a bit of energy, because I need to feel like myself. I need to feel like I can do things. I take the tablets, I rest, I take the dog on very short walks, I spend hours on social media. I volunteer. Sometimes I leave the house and talk to people about things I think are important; things I didn’t know about in the early years.
I am not M.E. I have given too much to ill health, I refuse to let it define me.
But still, at the back of my mind, I wonder. For most of us with fatigue conditions, exercise is something to be wary of. Some days my getting up and showering may cost me as much energy as your 5 mile run costs you. If I attempt to do too much, it can put me in bed for weeks. I know this. I’ve learned this. So, why, oh why, when I read an article about someone with a “positive attitude” who is exercising her way to better health, do I feel like a failure?
This is my tenth September with Myalgic Encephalomyelitis. I will never run a race. That’s not because I have a bad attitude; it’s because I have been chronically ill for years. I am not a failure. I am good enough.
Actually, I’m blimmin’ brilliant!