annanotbob2's Diaryland Diary


Thoughts on ED's MS

So. The thing for/about ED is tomorrow and I can tell you I am so full of such a bundle of intense emotions that I don't know how to breath, almost.

The plan is to sit around the table and look at photos of her in four different piles, sharing memories, thoughts and whatever emerges and reading some of the letters, cards and emails we've recieved. Babyhood, childhood, post-puberty and post-motherhood. Breaks will be taken when necessary. We'll also talk about how her having MS has been, as honestly as possible. YD has written what she wants to say about the MS down and I'm going to do the same, but I'm doing it here first as there's something about opening a Word document that squashes the chattiness out of my writing, and this is my blog so I can write what I like. Knowing what I'm going to start with, I know it'll require amending before reading it out, but only bits.

Winter 2001/2. I was almost at rock bottom with my first, worst breakdown when ED was diagnosed with MS, after being off work for a year. My step-mother had gone on holiday and I was staying in her flat so my family could have a break from my behaviour. Out of nowhere, ED had trouble breathing, an ambulance was called and she was taken into hospital. It's all a blur, but after a week or so, scans, lumbar puncture, god knows what, the diagnosis of MS was given and fell like an axe, cutting us off from the future we thought we had, where my children were hale and healthy, into a nightmare of unknowns and possible horrors. I didn't take the news well and the family refused to have me home until Ma returned and they had to have me. Although I can still recall the hurt of that, in retrospect it wasn't as unreasonable as it sounds as I was in a wild place and wasn't getting any help with it.

And then she was better, as if it had never happened, but with this label, this curse hanging over her. For ten years or so, this was how it went. The episodes were hard because she always became so negative about everything, then she bounced back to normal and didn't want to think about it. I remember being really shocked when she couldn't walk on the beach when she wasn't having an episode - that was the first time I realised that she was no longer remitting back to full health, but I think from then on I lived in a place of massive denial, scared to look ahead, and it was pointless anyway because it might not be like that for her.

It was only later I realised that her mental capacity was probably the first thing to be permanently affected. She'd been so fucking bright, so sharp, much smarter than me and I failed to notice as that ebbed away, apart from landmarks, like no longer thrashing me every time at online scrabble, but even then I didn't let myself look forward to where this was heading. And I'm glad I didn't. We dealt with what we had to deal with right here right now, trying to find solutions to problems as they occurred, and squeezing as much pleasure as we could out of it. She was brilliant too, determined to keep going, pushing herself

This is the bit that's hard, because fucking SIL was an absolute cunt through these times, as she gradually became a wheelchair user and all the rest of it. Ach, I don't want to write about this.

Here's what I did in art today:

I can't take photos that aren't blurred at the moment as I'll all shaky.

Bed. Come on then, tomorrow, let's be 'aving yer.

Grateful for: art group; friend D, met and hugged at last; two healthy children; remembering the support we got for the wheelchair van - nine grand raised in two months, such a warm bath of love for us and our girl; such lovely memories people have written about

Night night, sorry if this is full of typos and stupid long sentences, I can't re-read it now. xxx

1:04 a.m. - 17.10.15


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