Big Changes, and Realisations

Yesterday, the day after I wrote about my health diary, I had an assessment with ATOS, the government’s medical benefits examining contractors.  They decided, despite all re-tests apparently no longer happening, to re-test me … lucky me.

I was nervous … I know I’m worse, not better, than when I last saw them, but … this time, I was going alone, would they count that against me when my award says I can’t go out alone (even though it was not by choice, and I had door-to-door transport both ways).  This time I’m looking after my kids alone … will they count that against me, or worse, will they make notes of how little I do for them and how much they do for me, and report me to social services, giving them to him.  And last but not least – will I get one of those examiners who really doesn’t believe anyone should be getting benefits, let alone someone with an illness such as Fibromyalgia, and be summarily dismissed.

As it turns out, my examiner seemed very good – thorough, communicative, nice even (I’m hoping that reflects in the end result).  What I did come away from the hour with was, yet again, a reaffirmation of what I cannot do.  Having to describe daily life to the last breath will do that to you … how you throw more fresh food away than you eat, for lack of ability to prepare it, or fogginess that simply makes you forget it.  How the laundry backs up, loads get washed 3 or 4 times before they make it onto the airer, the outdoor washing line hasn’t been used for aver 2 years so you got rid of it, because it was one more thing to dodge in the garden anyway.  How little you interact with the real world.

I also found some new things I can’t do.

A year ago, when they did the physical part of the test, I could (just about) touch all my fingers to my thumb, and I could lift both legs a little way off the table.  Yesterday, my left side was not responding at all … neither my left little finger nor the one next to it could find my thumb, and I barely got my heel off the bed.  That’s worried me … it’s something that, whilst I’ve been aware of for a while now, in that I often have to support my left side more, either by stuffing my hand in a pocket, or dragging the leg like a dead weight.  Even my typing is off – I often find myself having to correct more of the left hand keystrokes than the right.  I haven’t really let myself think too much about it though.  Maybe I should.

Then we come to this morning.  It’s been a hell of a long week, unwillingly out of the house 3 out of the 5 days, when just one of those days is more than I can really handle in a normal week, and a sleep pattern that’s all but non-existent.  That takes its toll.  I haven’t caught up with the washing up all week – last Sunday’s dessert dishes are still stacked on the side.  I haven’t done the laundry all week … again, the last of last Sundays loads has this morning received its third rewash and finally made it onto the airer.

I've tried to wash up, but after two attempts, it’s 13.30 and I still haven’t done more than breakfast bowls and drinking glasses.  So, I did something I’ve been determined not to do … I got the kids to pull the party supplies crate out ( a leftover from when I could give them class-sized birthday parties, now kept in a cupboard that I can’t access) and fed them lunch off paper plates.  I’ll more than likely feed them tea off of them too, and there are disposable cups and cutlery on the dining table ready for that.  Disposable is becoming a more and more attractive concept, though the eco/recycle-everything part of my psyche is screaming about it.

I’ve thrown away more food in the last month than I care to think of – unopened packs of meat, full bags of spuds, bread that’s gone green just for the sake of stuffing it in the freezer.  After a brief happy period where I was feeding the kids real food, meals are again becoming pre-prepared, over processed, ready meals.

I already have the local taxi firm on contract for school runs and after school activities, and on speed dial for everything else, I pay for a cleaner once a week, and have a gardener as and when needed, I have hot meals delivered on average twice a week, and probably would have more if money were no issue … what more can I do?

(and that’s not a whine, it’s an honest question – I’m at a loss)