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?!

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.


Tuesday 29 March 2011

A fall comes before...a long silence

Last August I had a fall: a slip on the bathroom floor whereby my left leg flew under the shower chair, flipped it into the air and brought it down on top of me. So that I lay there, half on the hall floor, for an hour while I waited: first for Tom to arrive from work, and second – when he didn’t at his usual time – for the panic-button people and an ambulance crew to come and pick me up.

And it was agony. And poor little Lucy (toy poodle - as if you didn’t know!), who was in her own room “resting” while I cleaned up her “mess”, remained nonchalant the whole way through: didn’t even respond to all my shouts into the alarm microphone or when the lady from the council and ambulance men finally came, and with me discovering more pain and damaged nerves (shaking leg) by the moment, caused so much commotion. In fact, I think the only time she perked up was when Tom entered the scene and she heard his voice, smelled his smell: that’s always a precursor to excitement from Lucy!

I spent two weeks sitting and sleeping in the same chair (perhaps I should have gone for x-rays but I didn’t: just smeared arnica oil on everything and took extra herbs), and dear Tom waited on me hand and foot. He had a few days off to help but when he absolutely had to go back to work, left me a coffee table covered in flasks of coffee and herb teas, and cups of tissanes and spare cups…and crisps and biscuits…and, yet again, I’d never have managed without him. What a hero!

[Note: rang social services screaming for help but found out file had been closed and had to wait for “re-allocation”. Not the first time we’ve heard that. Should make a lot of noise complaining about it. But it’s too boring. And I’ve got to think of more positive things. Or go down, mentally.]

Yep, it took two weeks to be able to get back into my profiling bed and then - what a relief -: with my legs raised, the grotesque swelling gradually reduced and it got a bit easier to move: I started staggering – “furniture-walking” with a vengeance (never daring not to be holding something) and life looked a bit more hopeful. I spent about a month buying new and different slippers, online, till I found something I could stick with (literally, to the ground?!) and now, here we are…

Well, I have to admit that fall is still having an effect: I still can’t walk brilliantly; lose my balance a lot more; feel pain where there was none, or a lot less, before and, worst of all, sometimes, feel helpless…

I write constantly but too much gets drafted only to be ignored, through fatigue or depression, and then forgotten - going nowhere… And so there’s a new yardstick: if this piece actually does get posted…well, that’ll be an improvement and maybe the other bits I prepared for blogs can follow. That would be good.

In the end, I just want to say, “I’m sorry”. For anyone else who’s had a fall (and I know there are many - some who are bed-bound as a result and develop infections). You are all in my thoughts and prayers. God bless you.


Monday 10 August 2009

Trilogy intro - plus turmeric/curcumin

The next three posts all seem to go together so I’m going to publish them, hopefully in the order they were written (“MS is getting on my nerves” first), on the same day.

However, even after eighteen months’ blogging, I’m not sure of the best way to go about it. I do want three separate posts, each with its own title and its own window…

Oh, I don’t know, I suppose if I succeed, this little bit will be pointless. Regardless of whether the posts themselves are still topical - which they won’t be, if I don’t get a move on!…

How about, then (just in case), I say something here to make this post, alone, worthwhile? Well, I can try…

Turmeric. Most notably, its curcumin component.

Wow! I have been using turmeric powder, twice a day – morning and bedtime – for the last few months and my gosh, I’m seeing, and feeling, improvements in my MS. My legs are less painful and stronger. I have more energy and keep going longer and more often. My brain (they say it’s a good preventative of Alzheimer’s and I can believe it!) has been on overdrive and I can’t stop writing/studying/writing again. I feel more optimistic about the future and am even making plans for it.

All this, as well as saving my life as a bronchodilator. And I know it has.

There you go! Turmeric/curcumin. I’m sure I’ll be talking/raving about it again, soon.

But first, those three posts…

MS is getting on my nerves

Yep, it’s getting too much now all this CNS (Central Nervous System) under attack and dying nonsense. It’s an insult. A long, drawn out wasting away of every little function, every big function, till you don’t know which one will collapse on you first. And it’s all just a waiting-game, with pain and chronic fatigue its constant companions.

And no one talks about brain damage, which is what the lesions of sclerosis on your cerebrum cause and which ensures nobody likes you, ‘cos you have mood-swings and a vicious temper. And you’re left alone, too much, when you need help.

MS is an insult.

I guess it’s the bladder and the bowels that get you worst of all. They’re what really cause the aggro. And keep you hidden away and embarrassed, even in front of yourself. In front of anyone else (carers included)? Well, that’s where the body degradation lies, right there in the bathroom (or wherever!), in your toilet activities – or lack of them. That’s the humiliation and where you might lose your dignity.

If you don’t watch out. And allow it.

Which is easy to do, ’cos you get angry and you’re exhausted and in constant pain.

The final insult, I suppose, will be when you die of something else and not MS itself (that’d make it ‘terminal’ with people forced to sympathise – they don’t want to) but another thing that you got or that happened, as a consequence of MS. A “complication”, as they call it. [Unless, of course, it’s one of those “life” things that can happen to anyone.]

It’s not all bad though. There is still “the MS consolation” – I think I coined that one! With cognitive dysfunction (I forgot to mention it due to my cognitive dysfunction!), you hardly notice yourself slipping away.

I just hope I’m slipping towards somewhere better! …

PPMS "terminal"?

Debbie Purdy, a fellow PPMSer, took her case to the House of Lords and won. In future it will be possible for someone to escort a person wishing to end their life to Switzerland (“Dignitas”), for example, without risking prosecution. I wrote the piece below after hearing complaints, from MSers, about PPMS (Ms Purdy’s type, though in the media, not always made clear) being described as “terminal”.

So, let’s take a look at this…

Q. What is “primary progressive multiple sclerosis” (PPMS)?

A. First of all, it’s MS by definition: multiple plaques of sclerosis in the brain and spine.

Q. What are ‘plaques’? What is ‘sclerosis’?

A. Plaques are lesions which “dig in” to tissue causing it to harden/break down. This result is called ‘sclerosis’.

Many in the medical establishment believe that MS is an auto-immune disease with the immune system itself attacking the body: in MS, specifically, the myelin sheath (coating) normally protecting nerve fibres.

I, personally (along with many naturopaths), believe the sclerosis to be caused by the yeast Candida Albicans (see: “Candida Albicans and MS – a life story”).

The results are the same but not the “treatments” (see: “Supplements, Herbs & Essential-oils” for my own).

Q. What do we mean by ‘progressive’?

A. All bodily tissue is made up of fibres and neurons (nerve cells) belonging to the “central nervous system” (CNS). Once attached to the CNS the lesions worsen and multiply, spreading thoughout the body, causing increased degeneration. In PPMS this degeneration “progresses” continually with no remissions.

Q. Which parts of the body depend on the CNS being healthy?

A. Every single part. We are our nervous systems: our immune systems; every organ - large (brain, heart, lungs) and small (eyes, ears, bladder, bowels); our limbs and muscles; every sense and function (i.e. thinking, seeing, hearing, tasting, swallowing, urinating, defecating).

Every part and everything about us, is dependent on our CNS.

Q. So, is PPMS (as opposed to the other types of MS) terminal?

A. How long can someone last with a progressively degenerating CNS and a compromised immune system?

Conclusion: PPMS is terminal, if only because of the complications arising as a result of it.

Note: the most common causes of PPMS-related death are: suicide; choking; pneumonia (or other respiratory disease).

Disclaimer: as always, I write only from experience and research. I hold no formal qualifications in medicine.

[Satire!] A note to Debbie Purdy...

…following Law Lords’ court ruling (30th July ’09)

Gee thanks, Debbie, now it will be easier to have someone come with us to Switzerland (“Dignitas” my***!) to end our lives. They’ll even be able to help us, if and when we MSers are too paralysed, and won’t get charged for committing a crime – as long as we did volunteer for it.

Nice one! Because, it surely follows that it won’t be long before we won’t have to travel (too hard and tiring); relatives will be able to euthanize at their own discretion (always believing we would have wished it, of course). Doctors and nurses – even lovely carers - will be applauded for their “acts of mercy”…

And, when the State realizes how “useful” this is to society, by extension, it will force the extinction of all elderly and infirm citizens: no one else will need to make those burdensome decisions again. We’ll all be free to relax.

Won’t be long now. Thank you, Debbie (word to the wise, though: don’t try and take all the credit, it would have happened anyway).

Your fellow PP [primary progressive] MSer,