Wednesday 22 August 2012

My "crash" scene

Well, this serves me right. I can't think how to start. And, oh wow, I wish I'd been writing smaller posts than I usually do, more often, so that there weren't these long breaks between them.

Aha, but there's also been this eye problem... Whereby, I could hardly see the keyboard and so was lucky to put anything on the computer, let alone, my dear blog posts. For a while, till today...

Today, thanks to Tom, my brilliant son, I got a reprieve from keyboard "blindness" and to write a bit longer... This morning, he stuck some large key stickers (c/o the RNIB [Royal National Institute for the Blind]) onto my keyboard, and made all of my writing endeavours easier...and much more fun!

Yep, if I'm perfectly honest – and what is a blog for, if not for telling the absolute truth about one's life (that is, of course, if it's a journal and not something like a cookery blog!)? – I'm not in a very good state, physically. A few months ago, I had what my MS nurse would call a "crash" – perhaps an exacerbation, indicating that I have progressive relapsing multiple sclerosis (PRMS), rather than primary progressive (PPMS), as previously supposed: who knows? and: does it really matter? - a dramatic worsening of every symptom...

But, we'll come to that - if we must! First of all, I should tell you the good stuff...

Lucy's still here; Tom's back and is here most of the time; I - for some reason – have not gone yet...and – most important - God is constant; Jesus, with His cross, always leading...

The biggest change in the home, without a doubt - and, thankfully – has to be my care package... Yes, you will remember how I wasn't getting on very well with the agency and, much as I did like and get on with my male carer ('A.'), Tom didn't...and, anyway, he (A.) left when his girlfiend got ill and then I got stuck with lots of women, most of whom liked me even less than I liked them... And so: I took my direct payments to Gumtree.

I advertized for male PA/carers, heard from about a hundred applicants, interviewed three (all of whom wanted to move in right then!) and ended up employing one (I'll call him 'D.') – with Tom volunteering to be "cover-carer" (i.e. standing in for D. whenever he was on holiday, etc.).

Well, D. had said he'd be here at least a year, he's into his fifth month now...and I couldn't have been happier with a carer...

I think he's a saint! Really.

D. is a young man, younger than Tom, a former carer for autistic children and a couple of physically disabled seniors.

And he's so gentle, so quiet - I'm almost afraid of being too loud for him, and Tom and I together certainly are! – we (including Lucy!) hardly notice he's in the house. He spends a lot of time in his room (fortunately, his girlfriend is only half an hour away, so he does get to see her on some of his breaks), but is always there when I need him, and has proven himself to be selfless on many occasions.

After all, the way I am now – i.e. "chair-ridden", in a recliner 24/7 – is hardly the way I was when he met me, or was expected to be in his "job description". No, he was never told that he might have to: clean up a poo from in and around the commode (who'd have planned it?!); force a slipper on an oedema foot in the mornings; take a drink/soothing words to a panicking client in the middle of the night. D. is selfless, patience personified...

And I'm going to miss him like mad, when he goes next March (if I'm still here), and will have a hard time replacing him.

That's all about D. but what about Tom, my wonderful son?

Oh, Tom still finds it difficult, this situation of trying to be a carer, a loving son and, all the while, one of the lads.

And I feel for him, I really do. Working full-time as office manager at Baldwins the herbalist's, then coming here to cook every night, usually staying, and giving up a large part of his weekends.

Hardly socializing at all...

And yet, it seems to be the way he wants it for now. Making the most of this, what could be the "end-time" with his mum. And I am so grateful.

Lucy is still my very best friend during the day and I have to say that even carers have admired the way we communicate with each other. We can hold whole conversations, with her not saying a word (of course!), and I love it. She's such a good "listener", and I usually know from her eyes/body language what she wants.

Now, she's another one who's been totally non-judgemental, and adapted to all the changes that I'm sure she really hates, without even a murmer.

Oh yes, we still "travel", Lucy and I: going here, there and everywhere the Good Lord will let us go, in our dreams.

So you see, that, even after the "crash", which seemed to curse my whole being, there are still many blessings in my life.

I had the "crash" about two weeks after D's arrival: coughing up blood on a Saturday night; waking up on the Sunday morning to the hugest chest pain and the feeling that everything had been turned inside out.

And then came the after-effects: the discovery of new problems, one after another: bent-double scoliosis (curvature of the spine); supination (rolling outwards) of left foot; oedema (complete with staphylococcus rash); breathlessness; lowered speech volume; bowels apparently twisted; eyesight almost gone; maybe a bit more cognitive dysfunction (a lot more denial!).

Tom, who was here at the time, was the first to show great kindness, staying in the room with me the first few nights and then later, when I could no longer lift the left leg into bed, helping me buy the recliner chair.

And then it was D's turn, not minding anything, accepting it all...

And so the two of them have gone on...

Others have also been kind.

But not the Government (ATOS) who wanted a second ESA (Employment and Support Allowance) assessment form filled in, less than a year after the first.

And not the Council who wanted their fiddly, financial assessment carried out, so that I could "contribute" to the cost of my care package.

Well, I sort of see the reason for these things but, oh, the cruelty when people are sometimes so ill, they're literally close to death (Christian bureaucrats should remind themselves of Matthew 25:31-46 – a.s.a.p.).

Herbs! My herbal remedies (see here) must surely be one of the main reasons I am still here, still trying and - even I am impressed! – still smiling.

And Tom brings the herbs home from Baldwins, mixes them and puts them in jars; D. prepares and serves them on and off, all day, and I? Well, when I'm not taking them, I'm doing my best to promote the use of herbal remedies, as opposed to pharmaceuticals...

I write quite a lot (still at it with the ten-year novel; loving flash fiction [stories of less than 1,000 words] for its speed; visit the odd [sometimes very odd!] forum), and I teach, or inform, if anyone asks a question about herbs.

Turmeric/curcumin and cayenne are my favourites at the moment.

And I guess I'd better close now, as fatigue sets in and I know the family (Tom and Lucy) is getting bored – they finished their shower half an hour ago!

Promising shorter, individual, posts in future...

God bless,


P.S. Bought some great insoles from an online podiatrist called "Dr Foot". Consequently, have: walked to the bathroom with a walking-frame and D. following (ready to catch me), and to the kitchen (further) with a walking-frame and Tom following (ditto above). I did not fall. 'Progress' of a good kind?!

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