Tuesday, 1 November 2011

Changing times

Oh, I wish I could say something jolly to start off this post. It’s been so long coming…well, I certainly wouldn’t want to depress anyone (not even me should I ever re-read it again!).

I did have a draft detailing all the hold-ups and put-downs that got me down over the past year. And I’d worked so hard on it (as also on, at least, one other blog post, part of a novel and a couple of short story intro’s), all saved on Word. But, guess what? In all the fatigue of MS, the exhaustion of outside inflences, I hadn’t “backed up” for a while…and - you’ve got it! – crash! My eight-year-old Thinkpad had the equivalent of a human heart attack, and died.

Now this was the same week my mother died of a stroke and, before that, I’d cut my hair (well, Tom had!) from hip to ear length.

In the month of September. At the beginning of August: my first live-in carer moved in, gave us all (Lucy, Tom when he was here – he’d had to give up his room – and me) claustrophobia, and re-damaged my left foot (distracted me on way to bathroom; twisted on metal threshold; a year’s healing and physio [my own version], since fall, ruined ). [Note: the carer still gives us claustrophobia. Wish he (!) had his own place nearby. My (?) mistake. We might speak of this later.]

September also demanded I: 1) fill in that wretched – oh, I wrote so much about this in the last draft! – ESA (Employment and Support Allowance) form, and 2) keep an eye on which herbs and supplements the EU’s new licensing laws (April 2011 – see THMPD [Traditional Herbal Medicinal Products Directive]) would still allow us to buy through retailers (i.e. Baldwins, where Tom is manager, and I have bought my herbs for years).

[Notes: 1) my MS nurse helped like mad with the ESA form, filling in answers and writing a report. I was put into the Support group, in the end, after the months of worry about it. And I didn’t get the threatened Medical, after … Thank you, S---. 2) I am happy to report that: at least the herbs in their raw state are available over-the-herbalist’s counter – no brand-name (God’s own?), you see, or medicinal endorsement on back of packaging. And most of the supplements, I know of/use, are still on the shelves…if with their potency weakened.]

Yep, it was a whole bad month. Preceded by a good (oxymoron coming up) bad 11 months or so. Not a good year at all, since that fall.

Just realized I haven’t mentioned my overall physical/MS state… Aha, perhaps that’s because I don’t want to engage with it, dignify it, admit it at all. Sad, isn’t it?

But, okay: I spend too much time in my armchair now; find it harder and harder to force myself out of bed in the mornings; panic too much when I’m on my own (that feels as though it stems from a physical source, and/or is purely because I am worried about being ill alone or, worse, with Lucy so that she doesn’t know what’s happening), and all-in-all, am in a much more feeble state than I used to be.

I have to say though, things might not be half so bad, if only other people were kinder.

And I don’t mean outside people. Not so much. In fact, right here, right now I will say, hats off to Anglian Home Improvements who were great when they were contracted to do home improvements for my landlord. After hearing of my situation their spokesperson wrote me a very sympathetic email, assuring me they wouldn’t contact me again. Anglian Home Improvements really do seem to be the decent lot they are portrayed to be in those “we’re making a film” ads. Thank you, guys.

The same gratitude must now go to Mulalley & Co. builders. In recent weeks, they too have shown compassion and understanding for someone who has chosen to stay at home rather than go into a Home, and who needs their “bubble” to remain calm and quiet. Mulalley: cheers to you all.

The Government, EU, and, to some extent, the local council/RSL (Registered Social Landlord [in other words, bureaucracy]) must take a lot of the blame for the stress-exacerbated progression of my MS (as also for the suffering experienced by anyone having to fill in an ESA form or go without their traditional herbal remedies, etc. ).

But, after all my rantings and dreadings of having to live, again, on a building site (as at my last address for a hellish “Regeneration” three years), at least in this home it’s stayed quiet enough, long enough, for the spiders to still enjoy their freedom to roam. (Don’t ask – but I’m down to about 30 a year!) The “Home Improvements” – so far (!) – have not been a huge problem.

I’m afraid the ‘unkindness’ of which I speak, comes (I wish it was past tense, it isn’t), mainly, from family…but, also, quite a bit, from the present carer.

Even the Care Agency (I chose to give my Direct Payments to!). This little group, which isn’t based in London and does seem to have lots of positive testimonials from clients and their relatives, decided to “punish” me, by not providing me with a “cover carer” when A. (I’ll call him ‘A.’ for the sake of his privacy) was away on his 10-day “break”. Because I hadn’t answered the ‘phone, the day proposed cover-carer rang up (at some un-appointed time). Because I’d “refused” (the word A. used to them) to take the call, as I was writing.

Well, for Heaven’s sake, did anyone listen when I said, days later, that I might have been: on the loo; sleeping; praying; receiving visitors; panicking about something other than a ‘phone call; worrying about someone else (i.e. my mother/son/sister/brother/friend), and that it was against the Law – see Equality Act, Parts 2 & 3, I believe? No, of course they didn’t.

And I probably should have made more noise about it…but, heck, I had to find another carer (which wasn’t easy but was, eventually, managed for day-time - thank you, E------ Care in SE London), and then Tom decided to stay…so we got by that way, and it was sort-of good. At least, we all three got some space!

Maybe I’ll put the name of the bad agency here. They couldn’t sue me for libel, they put the explanation for their “punishment” in writing (clever huh?) and sent it to me (caring, huh?), Umm… Never did go to Athens!

Anyway, I refuse to let this lot get me down. And I have missed my dear blogs so badly.

So, I will be jolly again. And, you know what? I think I’ll put a copy of this post (like the one about the “fall”) on all my blogs, in order to move on: write about different topics with all of this, last year’s nonsense, out of the way.

It might be the beginning of the end as far as my mortal coil (thanks, Shakespeare) is concerned, but, hey: I always meant to go about dying with dignity (do I need to say ‘naturally’?) and a smile on my face, and that’s what I intend to do.

God bless all who’ve spent time reading this.


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