It is Saturday. I just found the sugar in the fridge. My phone has turned up in the pocket of a jacket I don’t remember wearing and I know I am supposed to email somebody, but can’t remember who! I have a list of jobs to do in my head: namely hoovering, ironing, bleaching and general tidying. Yet I am sat on the sofa in my pyjamas, my head pounding, typing this.
It is Saturday. Last night people went clubbing, dancing in the dark to the floor rumbling beats of well known songs. Last night people gathered to prepare: music in houses, smells of make up, hair sprays and body sprays. Last night people had no limit to the volume around them.
I was not there. I am not hung over (thankfully!), I did not roll in at five a.m in free flip flops, courtesy of the bible group who help clubbers at the end of the night (God bless them). Clubbers who stagger in feet that have been crammed in shoes too high. Nor was I in the various pubs or social groups on offer. Groups where people meet to talk about love, life and everything.
I have M.E and fybromyalgia. I forget things (they call it fybro fog). I hurt often – everywhere. I have a range of symptoms (leg twitching, light sensitivity, noise sensitivity and sheer exhaustion. All the time!)
I know I look well. I was told so the other day! I hear “but you don’t look ill.” I get the bus with my disability pass and feel the eyes judging me with the general school of thought: “she isn’t disabled!” If only they could live in my body for one day! I know this is one of those illnesses where people may look at me and think I am lazy, but I am not. Yes, I am looking at the jobs which need doing today and feel guilty for not having started yet, but I will start and it will get done. I held down my main job for thirteen years and have worked more or less constantly since (bar the sick time I am now having for current flare – magnification – of symptoms). Would I rather have a visible illness? I would rather have no illness. Most people with M.E/fybro lived full and busy lives before the illness hit. We all look back and crave what was.
I am lucky. I have a wonderful partner of seven years (who also suffers a lot of the same symptoms), who supports me. I have a wonderfully enchanting, loving and entertaining eight year old stepdaughter. I have a stable job where the doors are open for my return. I have a home, three slightly mental cats, and family and friends near by. My network is strong. Some people with this condition complain of loneliness. I do not feel lonely.
I feel guilty for not being able to do more than I want to.
I am merely typing the dominant thoughts in my head as I sit here. Now they are on page, they are out of my head and I can get up and get the washing on the line.
In a minute!