I don’t talk about CFS/ME on here often, I’m not inspired to write about it, it’s boring and annoying and mostly I just want it to not be happening to me. Half the time I think perhaps I’m not ill, just neurotic. With no conclusive diagnostic test CFS/ME is a diagnosis of exclusion, if you don’t test positive for anything else and fit the criteria for the NICE diagnostic guidelines then you will be diagnosed with this little understood illness. I do, and have had a diagnosis for just over a year now, regardless I still regularly question whether I’m just being negative and that if perhaps I change my attitude I’ll feel better. So I plough on, hoping to batter my way through this illness and to good health, it doesn’t work.
I have muscle pain, in my legs, shoulders, neck, wrists and hands. I have headaches. Nausea which sometimes keeps me up for hours in the night. Tiredness, unrelenting constant tiredness then sometimes a wall of tiredness which demands that I lie down and do not move. When I’ve overdone it my whole body feels ill, head to toes and I can’t imagine that it ever felt good. Sorry to be so flipping whiny but I want to help people to understand what this illness is.
I feel old, old lady old. I want to sit, all day, in a nice comfortable chair, with Netflix and my husbands hand to hold. This is a mild form of the illness, for some sitting up would be to hard, Netflix too stimulating and hand holding painful, I am lucky.
Treatment offered, and I’ve been lucky to be able to access a specialist team, was group sessions on how to manage and work towards recovery. Advice on pacing our lives. I had six or so of these sessions and now I’m on my own. I’m trying to pace myself but it’s not natural to me at all, so I’m caught up in a cycle of rest, feel somewhat better, overdo it, feel horrible, repeat. With slowing down as alien to me as breathing water I’m not sure how to move forward with this.
So I’m tired, and it’s boring and being English I’m aware that I shouldn’t complain and should just get on with it. How it feels though, is consuming, hard to ignore. I feel like I’m carrying a very large rucksack up a very steep hill, and occasionally I drop the rucksack on the ground, sit down and cry. It’s blooming annoying and I’d really like to feel better now please.