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!
me, mine, and other bits 
I get very angry with the sort of moral high ground about positive attitude. Not only do people suffer illness but they have poor attitude … double whammy time. AS IF the sufferer is not only ill, but at fault too. This is a blame game, not compassionate, downright cruel. I am worked up about it at the moment as there is a horrible book to be discussed this week: The Road to Character, by the american journalist David Brooks. What is wrong with that book (in between lots of observations that one wouldn’t want to dispute) and the whole positive attitude brigade (can’t dispute some of that either)? They start with an assumption that mind trumps matter, an arrogance that ignores the realities of all the outside impacts and the unknown inside body/mind unconscious stuff. AS IF their conscious “I” had full control. And then on the way to the praise of ME, they forget compassion. By the way, a great paper on compassion here, applies to adults as well as kids.
Sorry – rant over for now – xxx You are indeed fabulous, always real.
I have one word for you Speccy…… AMEN!
I can’t recall, when, where, how I stumbled upon you. I do know you we’re brillant then as you are now, with my shades on or off. If you or I or anyone else performed flawless the room would be filled with liars . Yes you have Myalgic Encephalomyelitis but it hasn’t tainted your ability to be benevolence to others.
My tenth too!
Not much to celebrate but good to know we’re not alone.
Mary xxx
I think you’re blimmin brilliant. How long have I been following your adventures now? Three, four years? Fiona, you fly higher than you ever did before, carving a road for others to follow, weighed down by brain fog but thinking clearly and incisively. You achieve miracles for others, and use your genius for publicity and social media to spread the word. I love your energy, your politics and your compassion for humankind. You are extraordinary. Happy tenth.