annanotbob2's Diaryland Diary


Getting a grip on it

The last two days have been very productive, mainly about moving Elder Daughter's situation forward. She asked me to be her advocate/spokesperson, but I hadn't really realised how little she's able to accomplish for herself these days due to 'brain fog'. In her case this is due to the MS but I'm no stranger to lack of cognitive capacity myself so I know where she's coming from with it.

Yesterday I woke up and had the same telephone conversation with her that I seem to have had again and again and again. I said the things I've said so many times before - yes, she is imprisoned at the moment, she's right, it's awful, terrible.


It can be transformed with a series of little steps, some of which I can do, some of which she must do. But her ability to do anything at all diminishes with every whole day she doesn't spend in my company and it's been a while (since I decided that SIL may have his own side of the story but I don't give a fuck, I can't look at him without wanting to do any one of a number of things which would only make the situation worse. And I haven't had the wherewithal to summon up the energy required to play nice with him when it is so far from how I want to play).

Yesterday morning I put the phone down and had a real rock bottom moment. Quite a long moment, but hey ho, when you hit the bottom you bounce back and (as I may not have mentioned for a while), I am a senior member of the Bounce Back Brigade and that was how it went.

The key problem seemed to be that I don't actually have MS and ED still doesn't know anyone else who has it - I can say all I like that she will have an active life full of love and laughter, but, what do I know? So. A while ago we'd heard about a closed facebook page/group/whatever for women with MS and ED had tried to join it. What happened to that? I found the page and wrote to the administrator who replied at once, saying she'd check it out and did I know there was a closed page for family/carers? I didn't then, but here I am now, a mere 24 hours later, embraced into a new community, already with a date to go to the British Museum with ED, grandson, a group of MSers and their kids. Phew. Thank fuck for the internet and the much-maligned FB. Here's the link (waves at friends she thinks might be interested). It originated here and has only been running for six months or so, but I've already met a writer living in CA. The bit that clicked with ED at once was the acronym CUTO, which stands for Chin up, Tits Out. Brilliant.

As well as that I
1) phoned grandson's school and spoke to the student support woman about his home circumstances.
2) phoned the MS Therapy Centre (I'm not sure when I did this - maybe I wrote about it already) and they phoned ED and arranged an appt for a couple of weeks time.
3) spent an evening with M, who turned up for a home cooked dinner, was palmed off with a mediocre take away and gave me some shit hot advice based on his years of working in the NHS. Can't remember it as I was very stoned, but it was very motivational.
4) discovered the existence of 'dial-a-ride' for those who can't use public transport and arranged for them to send her an info pack
5) spoke to her GP about her isolation and mental deterioration and tendency to tell people she's fine because she's so lifted by the very sight of someone coming to her door. The GP is going to visit. I spoke to ED about telling the bloody truth, like she does to me, not putting a brave face on it, but I hope to have the opportunity to reinforce that immediately before the visit.

In amongst all that I've had a series of emails from lovely girl at H0us1ng ben3fit. She put me right to the top of the heap so rent backdated to 1st Aug will be paid to me on Monday. Not for all of it, as I'm in surplus bedrooms, but still a good chunk of dosh. Fucking A, as the youth used to say, once long ago. She also told me that I'm entitled to double rent for a few weeks while moving from one place to another as it's impossible to co-ordinate tenancy dates in a landlord's letting market. This is news to me - they don't publicise that kind of thing, so I'm relieved and grateful to hear it.

Flats keep coming through on the mailing list that are almost perfect, which is very reassuring and encourages me to continue to build up my energy reserves and wait a while for the absolute best one. Today there was a flat with a really big hallway, great lounge, good size bedroom, fireplaces, sea view (sea view!!), in a listed Regency building, but it was on the top floor (3rd UK, 4th US). That's no good for ED to visit, so it's a no, but where there's a place that size upstairs, there's one downstairs. That had a bigger area than this house, even losing a bedroom. It's just about timing.

Fifty plus yoga today. Honestly, they all looked so young I had to check I had the right class, fuckers. Then I remembered that I'm edging up to sixty, so I may have been the oldest. But I was comparatively flexible - the teacher pushed me to try things without a strap or a block and I could do them. I can hold my toes with my legs straight again already, after just a couple of lessons. Muscle memory. Brilliant.

Grateful for; a sense of progress being made, of walls being pushed open; the internet; HB girl, what a blessing to have met her; a fab bunch of golden sunflowers that have lasted for ages; my kindle - have I said how much I'm liking that? I fear the implications for authors and publishers, but I haven't considered it fully, so who knows.

Happy weekend, dear ones xxxx

9:16 p.m. - 2011-09-08


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