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.


Wednesday, 2 December 2009


What a joke! Normally speaking, that is, what with the MS and everything…

But, hey, right now. Just for a day or two, I’m celebrating, because I am a winner… I won the NaNoWriMo challenge to write a 50,000 word novel in 30 days. I did it. I’ve done it. And I feel really chuffed!

Oh yes – for all those who read the last post – against all the odds of MS fatigue and pain, drills and hammers as background accompaniment and the usual familial relationships to contend with (you live alone but suddenly a son decides to stay a couple of days!), I – doggedly and with “Think you can stop me?” determination - stuck to my Word document (on my trusty IBM Thinkpad), kept checking my wordcount and b***** well finished the 50,000, three days early: on Friday 27th November, 5pm! So proud!

The thing is: I haven’t finished the story, so through December I’ll be joining with lots of others in NaNoFiMo – National Novel Finishing Month!

And then there’ll be the rewrites - if I haven’t given up with it by then, the plot holes I see now are getting to me! – and, finally, lots of editing (yep, with NaNoEdMo, in March!).

I’m going to try and make it work though. End up with a proper, bona fide novel in the end. Because, for one reason, I’ve grown fond of my characters (one does have MS!) and need their lives to make sense!

So, onwards…

It’s a Middle Grade children’s novel, by the way, and this is the synopsis I wrote for my NaNo profile:

It’s an ill wind…

A brother and sister want their separated parents to get back together again but it’s not going to be easy: their dad's an alcoholic and their mum has a degenerative disease.

It’s an ill wind…” describes how each member of the family, with help from the children’s brainy school friend and a ghost from an old windmill, gets to move on with their lives – and come out smiling.

It’s not a bad ending for the friend or ghost either.

P.S. If any of you have/know someone who has MS (or other degenerative disease/problem) - and you’re/they’re not taking it already - I would urge you/them to add turmeric/curcumin (see also here ) to your/their regime. Even T. (my son who works at a herbalist’s), recognizes the improvement in my overall (physical and mental, especially, cognitive) health, since adding it to my own.

P.P.S. NaNoWriMo is well worth the effort (the Winner’s Certificate is going to look great on the wall!) – I have loved every moment (the forums are friendly and fantastically supportive) and it’s been good for me.

God willing, I’ll gladly do it again next year!

See you soon…

Wednesday, 18 November 2009

And for my latest trick...

I’ve got progressive, severe, MS. I’m sitting on a building site (see here and here). And I’m writing a novel in 30 days (NaNoWriMo)!

P.S. Missing writing my blogs [Blogger, can I have my sidebar pics. back, please!] so I’ll post this on a couple of them and hope to see you soon.

P.P.S. Lucy is fine and good company - not a bad muse!

Hope you’re well.

Thursday, 15 October 2009

Blog Action Day '09 - Climate Change

Here’s an irony: I have the beginnings of two novels on Word, both with a main theme of climate change, yet have nothing planned for this, Blog Action Day ’09.

It would be good if I could cite something to do with “global warming” for my distraction, but, unless I repeat myself on MS (multiple sclerosis) and Environmental Illness (see here); or tell you I’m curled up with guilt over my use of fossil fuel electricity (I’ve researched wind turbines like mad and wish I could have one built but, alas, can’t use the roof without upstairs neighbours’ agreement to share [and that’s if we got planning permission] and can’t use the garden, again without planning permission and, realistically, a lot more money than I have) – ‘curled up with guilt’ and/or cold due to it; unless I protest at how my head hurts and MS symptoms are worsening as a result of using mercury-filled light bulbs (only type available now [aside: further weakening of elderly/infirm = more volunteers for euthanasia?]) – plus, their low-wattage (“energy”) is making me colder (cold: stops clear thinking; writing; demands more heating; could cause hypothermia); unless those reasons (all true) are all I give: a) this post will never be done in time, and b) I’ll be writing my novels…

And, therein, lies the crux of the matter: I am personally so worried about pollution and the ruination of our planet that I have become obsessed by studying astronomy and thinking about humanity’s habitation/colonization of another planet to put into these two (one for children) speculative/sci-fi books.

So, ironically and in more ways than one, I have been distracted and kept away from this blog post on climate change, by climate change.

It bothers the living daylights (great pun!) out of me and I want to thank Blogger and all the bloggers, everyone involved in Blog Action Day ’09, for their highlighting of this - most serious of all issues - issue. Let’s hope and pray that our voices (with others’ such as Greenpeace) are heard and our warnings heeded.

P.S. On a smaller note (but giant oaks start with small acorns, right?!): could borough councils work harder at recycling, and every borough council fit solar panels to homes and/or build wind turbines for their community? Just a thought…

Tuesday, 5 February 2008

Regeneration equals de-generation

The elderly, the infirm, the sick. Babies. People dying, being born – and living their formative years. Those with goals and ambitions, others who live only for the day – and struggle to survive it. Good people. Bad people. In between people – decent. Hardworkers. The unemployed and many with money problems. Struggling mothers, loyal fathers. School children. Those with relationship issues. And some trying – against the chemical odds – to hold it all together.

All these beautiful human beings are made to suffer when the greed and corruption of local government authorities (i.e. councils) decide to “regenerate”, aka “improve”, their housing stock - to sell on at a later date.

And someone like me (i.e. with multiple sclerosis (MS)) acts as a microcosm of the macrocosm, which is all of the local community. Because someone with MS feels every little nerve attack to penetrate the Central Nervous System (CNS) and exhibits, in exacerbated symptoms, the results of that damage, to be witnessed and recorded for all time.

As human rights are violated ( Articles 3 & 8) by the tyranny of beaurocracy, so an MSer will prove through their own being, the inhumanity of this social scheming.

The torture which is the experience of existing (for there’s no life) each day on a building-site. With the cacophony of voices, vibrations and machines.

It is the soundtrack of Hell ('Pandemonium' in Milton’s Paradise Lost) with Mammon as conductor of the orchestra, Beelzebub, principal percussionist. And you can't get it out of your brain...

I cannot believe this is happening [what, not bad enough the progressive MS?] but it is. Apparently. I am to be imprisoned on a X [borough name] council building-site for the second time in eight years (first time 2000-2003 in last home – was moved because of it and for wheelchair access (good that I’m Catholic and can believe in Purgatory and serving my “time” on earth – I hope most of it!)).

But, as I promised in this house when first it was rumoured (i.e. we all had to vote for a new landlord and this one – a Registered Social Landlord (RSL), calling itself ‘Community Housing’ – won [so they tell us – we voted “No”*]). As I said at that time: if this happpens again and I haven’t managed to leave, then this time with a blog, I will record exactly what it’s like, as it happens. So that governments might in future consider all tenants before they do, their rash, brash, money-mad plans.

What else is a housebound journalist going to do?

Oh, watch out, you minions of Mammon!

*We covered the first of this borough’s sell-offs in the local paper I was on and that result was, I believe, a ‘No’ from tenants but the take-over still went ahead. [This is the same council, some may recall, was a “flag-ship” Assembly in England, with its own, self-“elected”, Mayor!].

Yet I realise some tenants fell for the hype and thought this would be a good thing. Perhaps they decided it was the better of two evils [a lot of that in my life at the moment!] the second option being a Private Finance Initiative (PFI), aka private landlord – in order to get repairs/renovation done. Those, presumably, who now serve on the board of the RSL or, at the very least, have become ‘shareholders’ in their ‘community’. It does sound good.

But, what they’re not seeing are the years – they promise five! – of noise, disruption and filthy mess that will engulf their every waking moment.

And what they’re not thinking of are the rent-increases to come (usually, I believe, after the first five years which are in line with inflation. After thirty say, when they become extortionate and out of the range of working-class people.

When some tenants will have been forced to leave their homes which will then be sold on to the private sector.

That’s what those tenants who voted “Yes” didn’t think of (unless they did and wanted to be in on it!). Or the fact that they might be in the first group of people I described later on in their lives.

The ones who really will suffer from all this: the physical, practical work now. And the ones for whom I speak out.

With them in mind, and having experienced already the horrendous degredation of “regeneration” and developed a phobia against it, I offer this solution...

Before any such action in future, local authorities will:

- build new houses/flats;
- make them available to all those who would rather (or must for health reasons) leave their homes while work being done;
- move those tenants to new properties (giving them the option to stay when previous properties completed);
- carry out work;
- when next estate scheduled for “improvements”, make homes on first estate– now meeting [government] “decent housing” standards - available to tenants on this estate wanting/needing to vacate (if not enough space here, then, again, using newly built homes).

So that you have a leap-frog system in place with all those who really can’t tolerate (i.e. me!) anything louder than a spider climbing up a wall, placed somewhere safe, secure, warm, dry (you know, all those prerequisites for rented accommodation, by law) and conducive to human life.

There, problem solved – except it isn’t! – and end of lecture/panic for now...

DISCLAIMER/P.S. Of course, I am not a politician or lawyer and some of my statements might seem confusing. Please click links so you may be clear.

All I know as a disabled tenant is, the enemy’s gathering forces and there’ll be a bombardment soon.

It’s amazing how something like this can help you empathize with others in the world.