annanotbob2's Diaryland Diary



Email first thing this morning from MS Nurse:

"Thanks for your thoughts on this. Its very helpful as I'm aware that I donít always see ED at her best. Have forwarded this on to Dr Y and also had a chat with her. She will refer ED to the gastroenterologist for assessment for a PEG."

I wish I hadn't googled PEG and read the wiki entry, so I'm not linking to it.

On we go. One day at a time.

Today I was just shattered. I set off down the road for yoga, onto the bus, off the other end and was making my way up the hill when I realised I had nowhere near enough energy to even get there, never mind do a class. Of course I didn't - I'd scraped the energy to get through this weekend out of a very empty barrel.

I have been buoyed up by the support here and on FB. On Saturday night I was beside myself with despair, too late to call anyone, all alone in that fucking mobile home. Mental for a bit of kindness I posted: "If you're a praying type, or similar, now would be a good time to pray for my family, if you've a mind. Thanks x" I can't even explain why that was what I wrote, because I'm not at all sure what I do and don't believe in, but it's definitely not any kind of God-figure - though actually that's bollocks, isn't it? When I had to move house I first wrote a description of the flat I wanted and here I am, living in it. I spent long enough (weeks) searching and viewing truly vile flats to end up bursting into tears of utter desolation in an estate agents' office, sure that I'd have to live somewhere that would depress the shit out of me. When I got home I had a phone call from one of the lads who worked there, about this very flat that I'm sitting in now, owned by his dad: big enough to have the family to stay (a bit sleepover-ish, but possible - YD and SIL stayed for two months the first summer); a garden; safe for the cat; within easy reach of the seafront (that was when I was going for it, but the previous three were essential); not a depressing return to the grim places I lived in through my 20s and 30s, but decent. All that plus a landlord that looks like Jose Mourhino and cracks on with repairs when necessary.

As I've been writing, I've realised that the problem with this regarding ED is that what I want is my daughter back, which could happen if a drug is discovered that repairs the damage to the myelin sheaths (I don't really know what they are, just that they're what MS destroys). Nothing else is necessarily permanent. There are developments that look hopeful but they're years if not decades away from being available, even if any of them are the one that works. ED is not able to consent to participating in any trials.

So if I'm not calling forth the impossible, where the fuck do I pitch it? All sorts of significant remissions do occur - it's not out of the range of possibility and her MS has been one of mad extremes, so why not an extreme remission? I want her to be able to communicate more, remember more, see more. To swallow. I want her to spend more time with people she loves, who love her. I want her to have a life, not a half-life. So.

But I am grateful today for: the MS Nurse; a visit from Jdog, bearing a top-of-the-range meal for us to just bung in the oven; being able to write again; Bob no longer using the litter tray (which I chucked in the garden during my lost weekend) but pissing and shitting outside again; Bloke; meeting an ex-teaching colleague on my way back from not doing yoga and having a coffee with her and not telling her about ED.

M is for mud:

from last week, but found and cropped today.

Laters xx

1:37 a.m. - 14.10.14


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