annanotbob2's Diaryland Diary
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#thefaceofMS
So it's World MS Day or Week, or some bloody thing, and linked to it on FB and Twitter there's "The face of MS" where people with MS are posting selfies or those of us whose MSers have passed beyond the ability to do so are posting pictures of ourselves with our MSer. I had to go back to February to find a photo of the two of us where she's 'present' to a level that won't upset everyone who hasn't seen her for a while (it's a look described my many as 'monged'), though I wouldn't post one of her looking like that anyway, but the truth is that is what she looks like a lot of the time, that is who she is now.
So this is the face of MS in my life, me and my daughter, ED, diagnosed in 2001 with RRMS which changed suddenly to SPMS a few years ago, decimating her cognition. Still laughing. We both say grab life now.
I find myself wanting to shout at all these MSers DO IT NOW! Whatever it is, do it now. Don't assume your MS will develop at a steady pace, that you will have time to do the things you want, that all the world's nooks and crannies will remain accessible to you. They might, they probably will, but they may not. So do it now.
I'm so full of regrets right now. All those years when she could talk and I didn't listen to her because she talked all the fucking time. I'd give anything, anything, to hear her prattling on. I cannot believe that I'll never have a proper conversation with her again. I have times when I can accept it, but they pass.
There's also a lot of regret for the things we didn't do. She never came camping with us. I didn't get her on the London Eye while she could still see - it never occurred to any of us that her sight would just fuck off like it did. Though we did go on the London Eye, in October, just before she had that last plummet off the scale and had to go into care. This was what I wrote then:
"Still at ED's after a day in which we surmounted many challenges and went on the London Eye! Wooey hooey and cowabunga to say the least of it.
"I had two majorly dodgy moments - first when trying to change trains at Finchley Road tube station. This is just get off one train, cross the platform and get on another, should be no problem - marked as accessible to wheelchair users on all the maps. Except when the second train arrived there was both a gap and a height differential between the platform and the train and I couldn't for the life of me get the chair on, even with the help of two passing blokes, one of whom nearly got squashed by the closing doors till I yelled at him to leave it, we'd catch the next one. No member of staff in sight to ask where to stand, started to panic as there's no lift, forgot we could go home, envisioned spending forever on platform 5, no toilets, no smoking allowed and on and on till I realised that if I took the stabilisers off the chair would tip back enough and all would be well, which it was.
"ED loves all this. She finds her current situation so tedious that any kind of jeopardy makes her day. She's in luck having me as a mother as I usually seem to provide at least a smattering of the stuff. Yesterday I managed to get the chair stuck in a ditch in the middle of what should have been a gap in a hedge (there was a sign saying 'Public Footpath') and ended up down amongst the brambles and nettles, in my floor length skirt, on my hands and knees, going backwards, pulling the chair by the front struts, to much hilarity from ED. Ha - just realised I actually did go through a hedge backwards, though I wasn't dragged through, so didn't quite match Ma's oft repeated comment on my appearance.
"We got to and onto the Eye without further hassle but as it started to move, I had a total anxiety attack - I hate heights and I hate those kind of structures and I hate hate hate not being able to change my mind and get off and I'd bloody forgotten all of that until it was too fucking late. ED's vision is too poor for her to notice (I know, great day out, one nervous nellie and one half blind person on a giant big wheel) and I tried to keep it steady for her - well, I came and went, but I had a few moments of coherence, during one of which I pointed out the Houses of Parliament and the bloody girl grabbed my arm and started telling me everything she could remember about politics, which is basically fuck all, but still took an inordinately long time to spit out. Honestly, it was vile, I hated every minute of it. When we finally got off, and down the ramp onto solid ground I sat down on the pavement and wept a quick but nasty get-it-all-out-and-move-on kind of snotty howl and after that it was all good."
Today I am grateful for: rain: a garden to potter in; the beginnings of a plan to visit a friend in Vegas when I get my pension dosh - well in the autumn or some time when the temp is considerably lower than today's 103F; a plan to visit K in the craft field at Glasto - we met briefly at Shambala and have cemented our friendship online, so really looking forward to seeing her again; my kids; making it through another day (still maintaining my 100% record of getting through them, no matter what)
sweet dreams xxx
1:58 a.m. - 28.05.14
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