I may not have a job but I’d say I have a full time occupation! It’s rehabilitation of sorts.
Activity Targets, for me, are simple things like “Brush my teeth”, “Wash my face”, “Shower”, “Wash my hair”… Putting a tick in those boxes does not happen every day but during times when my life feels completely overrun by suffering, getting to tick a box gives an incredible sense of achievement. My favourite tick to put in the box is “Make [Mr Tree Surgeon’s ] lunch” for work the next day. I haven’t managed for a while.
I’ve spoken before about my Activity Charts (Forget the degree…) but that was years ago and I have had to resort to them again, more as a way of tracking my activity. They allow me to look back over the last few days to see whether or not I may have done too much in a week. Silly to think that such simple, everyday things (most of which are to do with personal care) can be deemed as ‘overdoing it’. But there it is. Most people would lump such ‘activities’ into one category; getting ready. Yet for me, and so many people like me, they cannot be tackled in that way anymore. They must be broken down into several tasks. It is what it is.
Some days even water hurts my skin. Sometimes my arms are simply too weak or too sore to lift them up to my face to wash it, even with a wet wipe. I fear I am reaching the point I got to years ago when I had to shave my hair off just to keep hold of one tiny bit of independence – washing my own hair.
The truth is, all the will in the world cannot get done what you’d like to get done when yo have M.E. or a similar chronic illness.
At the moment my suffering from M.E. is quite severe. A days worth of energy can be wiped out by taking a shower, even with my mobility aids. The noise of the shower, the temperature change, the getting undressed, the movement of my arms as I wash myself, even from a seated position. All the mobility aids in the world cannot help an M.E. sufferer get showered some/most days. All the assistance from carers cannot help get your hair washed.
The truth is, some days the M.E. riddled body just cannot muster the physical strength to do things our old selves would have tackled without a second thought.
Of course it has been quite the month. My Personal Independence Payment assessment was more traumatic than originally feared, so much so that our MP has taken up the case himself thanks to Mr Tree Surgeon contacting him. We have not yet received the DWP’s decision as to whether I should still be in receipt of the highest rate of PIP. Once I have heard I will fill you in on the assessment properly.
On the ‘Anna Scale’ on things I am not doing so well. I’ve decided that I will answer the dreaded “How are you?” question according to this new scale I’ve created for myself from now on. It’s no good telling a healthy person I am fine or okay because that term in completely subjective. Their idea of fine or okay is probably worlds apart from mine. Okay for me means I have managed to walk unaided down the stairs, get myself to the toilet, boil the kettle safely by myself, open the fridge door with my super strength! To them it might mean that they’ve had a decent but dull day at work from 9-5 and then nipped round the supermarket to grab something for tea that evening.They may well choose to describe a day that I would call okay as absolutely dire, hellish or a complete waste of a day. (I have some rather dramatic ‘Healthies’ in my life – I used to be exactly the same!)
I can’t expect people to understand the differences between our lives and the struggles I have if I don’t at least try to tell them. As ever, I endeavor to do it in a way that can’t be interpreted as self-pitying or too doom and gloom.
So now I will answer like that (when my cognitive function allows me to remember and communicate properly!) For now it’s back to basics here. No gallivanting about. No showering every day. No attempting to run a house like the sloth-like housewife I am. Just trying to get those ticks in some of those boxes as and when I can, and celebrating those showers when they happen as if I’ve run a whole marathon backwards while blindfolded!