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,

Virginia

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?!

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.

Virginia

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.

Virginia

Winner!

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…

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.

So, what happened to July?

So, what happened to July? Well, it was freezing, wasn’t it? At least, in London, UK, where I am: windy; cold; grey; raining, and with shake-you-up thunder storms thrown in. I didn’t have to go out but I felt for those who did. It was horrible. Depressing.

And I’m worried. Because here I am, most of the time humanly alone, not moving much and depending on one toy poodle and a couple of spiders to generate any heat, other than what comes out of my – can’t afford them – oil heaters. Honestly, who was the mad fool who, first of all moved here when things weren’t organised enough, and then decided to have the gas disconnected (I’m not allowed to have it put back unless I have a new boiler – away from the sitting-room where my bed is – installed. Mad! It took me years to get it “right” at the last address)?

It wouldn’t be so bad, but I’ve now offered to pay a local woman a few pounds a week to help me: eat when Tom’s not around; shower, etc. In other words be a kind-of “carer”. Oh boy…

You see, just after my last post here, I got a new social worker (s.w.) – after all those months! – and so, all the talk (T.!) started again about what was I going to do (because he wasn’t going to be around – wasn’t willing to be)? So, I put an ad. in “Gumtree” (classifieds online) and offered a room, and thought I’d get replies from people who wanted a bit of extra money but, most of all, just to be in London, working or studying.

But what I did get was a constant stream - from all over the world eventually - of some very good people with (often) very good CVs and references, wanting, not just the room but to, genuinely, be my carer. Excellent candidates. The thing was – oh, naive me! – they also wanted, and expected I realised when I did my research more thoroughly (thank you, Google!), around £400 per week!

What a mess.

And yet, there was one glimmer of hope: one of the respondents was a woman who lived down the road, was Catholic, had grown-up children and a dog and didn’t seem too bothered about the pittance of pay; she also thought we could be “friends”. Perfect.

T. and I arranged for her to come here when he could show her the ropes (as it were!) and, even though I was very nervous, I was going to go ahead because, at that moment, it seemed the best option (still does, really)… Well, she came early, knocked quietly – by all accounts – we didn’t hear her or answer; Lucy (not a good watch-dog as poodles are meant to be – it depends on her mood!) didn’t bark and, “feeling nervous about the new neighbourhood” apparently, my new “carer” turned back and went home!

Well, when we did speak later and she told me she was having severe dental treatment the next day, I figured she didn’t want to come and ignored her for a while. Till this week when I emailed her again. And she said she would still be pleased to be my “carer”.

But this cold weather is taking all my money. And it’s meant to be summer and it certainly doesn’t bode well for the winter…

It had to be done, if only to be polite: I talked to the new s.w. today and she did seem nice enough, but you know me, I get the heebie-jeebies, I’ve put her off for a few days while I “think about things”. (Do I tell the truth, I ask [as someone who prides herself on not having lied since the age of 18 when she vowed never to again]? Somehow, I think it might be more to do with wanting to get on with some writing before submitting to the claustrophobia, perfumes, etc. of strangers in the house.)

Ah, I’m not a nice person! But I can’t help it, I get physically sick. All I’m actually thinking is, please, no!

And T. (the initial is his choice) is throwing out his old double-bed, from his “old room” in the morning and, in the afternoon, a new single bed will arrive. He’s organised all this and paid for it and I know he has an ulterior motive (it’s not just “tidying up”). I know he really wants a live-in carer to move in. But he doesn’t admit it. And I’m sad.

July… Named after Julius Caesar (100BC-44BC) in 45BC (see Julian calendar). The consul/dictator of Rome who himself, chose to turn back from Britain (first attempt to “come, see and conquer”) when stormy weather in the Channel wrecked half his ships. It was late summer 55BC and I have read (sadly can’t find the reference) that this, probably greatest military general of all time, said he “wouldn’t want to visit such a cold country”. Good man!

Anyway, talking of Barbarians (well, Caesar was!): I’ve also had a helluva month with marauding bureaucrats!

No, not really… Well, yes: it was (oh, I hope not ‘is’) all to do, again, with those threatened “Decent Homes” improvements - c/o my user-friendly Registered Social Landlord (RSL).

And this time, because it’s bad for my health (nothing but stress, exacerbating symptoms), I’m not going to dwell on it. Only to say, that I’ve reminded my housing officer that these works are not mandatory (either by their standards or those of the European Convention on Human Rights [Article 8]) and, thank you, but I will be (am) declining their offer of same to my home.

Well, he chose to argue for a while. You know, tried to “liaise”. But I think – and hope and pray – I’ve persuaded him to leave me alone now. All will be, unintruded upon, in my bubble!

As for the writing… Well, I’m still, intermittently, working on my sci-fi (more “speculative” than science) novel and I think it’ll get there (“The End”) eventually. But, oh dear, it’s very slow going, due to all the research I must, keep stopping, to do.

What has actually been flowing – in other words, is much easier to write – is some stuff I’ve been doing on MS (not too much research needed there!). A couple of short pieces I wrote for this blog and MS – My Scene, which I’ll try to post very soon, and - more interestingly from a writing point of view - two fictional stories I thought I might contribute to the MS Society.

At the moment though, I’m not absolutely sure that’s what they are: short stories. I think at least one of them might make a novel. Ha, but who’s got time?! … I know what: I’ll try and whack one out for NaNoWriMo this November! Golly gosh, I’m always in a rush!

Yet, still maintaining that air of calm composure. Whenever Lucy’s around, anyway. Well, I try…

Ho ho ho! I’m only saying what I know the great Cesar Milan (C.M. [aka “The Dog Whisperer” (see the National Geographic Wild channel on Sky TV, etc.)]) would want me to say. And be: “Calm, assertive!” If I want to be “pack leader” in this canine/human relationship, that is.

And, of course, I do. But look, there’s the problem right there. Who did I put first in that description? The “canine”. The dog. Lucy!

That’s why I sometimes (actually, mostly when T.’s here!) have a spoilt, demanding, yapping/whining (but still gorgeous) little Lucy. And why I’m glued to Cesar (the name [note spelling], for me, is a coincidence in a post where I talk about Julius!) nearly every night. It would help if T. would listen when I try to explain the disciplines and put them into practice. But then, T. is still at the stage where he equates “having rules and boundaries” (C.M.) with lack of love. Bless him. He just wants everyone to love him and thinks they won’t if he’s firm. He’ll learn!

Suffice to say, when we’re on our own, Lucy couldn’t be a better friend – or more loving. I adore her more now than I ever did.

And there, isn’t that a nice, chirpy post for a change?!

P.S. Ah, well it was, anyway, before 30th July, when I heard/read about Debbie Purdy and her Law Lords’ court ruling, making it easier for someone to assist your suicide in Switzerland (at “Dignitas”). And now I’m depressed. And I did start to add a piece here about it but, on second thoughts, think I’ll either put said piece on MS – My Scene, or do my very best to forget it.

You all know my feelings about/opinions on ethanasia (see “The obligatory SAD piece” and elsewhere): I think it’s wrong; bad; murder (suicide, self-murder) and, therefore, a sin. I also think life in this world should, and could, be kinder so that PPMSers (like Debbie, 10% of all MSers and me) aren’t made to feel like that. No one should ever feel their life is not worth living.

Today I am thinking about warp-drive

"Planets forming Pleiades". Image credit: University of California.

Today I am thinking about warp-drive. Ah, some will say, Virginia’s got into Startrek – and, to some extent, they will be right. Others, who know more about physics/astronomy, theories of relativity and quantum things, will wonder if I’m thinking of space-time and travelling, faster than the speed of light (FTL). And they too, will be right – to some extent.

But I think I am writing this, not to talk to those who think those things (there are space forums for that which I’ll come to) but to call for help to you guys who know I should be dealing more with my – MS – situation: “reality”, as Tom puts it!

With the fact that the disease is progressing, I am becoming less able all the time; and, with the fact that I still don’t have carers. You know, real depressing stuff.

Ow, it’s no good. I can’t do that. Well, not when I’m only able to live for the day, anyway. And that’s what I’m doing. I mean – in my defence – how else can I get through from one dawn to the next, without any help other than, dear, Tom, still; and with no one following up my, myriad, ’phone calls on the subject. I’m trying to keep it cheerful and, more importantly, not boring or I really will go under – FTL!

Somehow the idea of writing my novel and it becoming a success, is more feasible and, it seems to me, much more likely than the idea of having any satisfactory Sociial Services (SS) “Care” where I am now.

So, I am trying to deal with it – the situation – in the best and probably only way I know how: by writing. After all, I earned a living with it before, why not now?

I am working (with my sci-fi novel, especially) towards being able to buy a new home, in a new area where I can employ private, live-in, PA/nurses.

The most far-fetched – as in: bizarre; unbelievable; warped - thing going on here is the behaviour of SS during the last year…

Now I know I can’t be the easiest, or most popular, client to have on your books but, really, I have a right (and what worries me is how many others must be in this welfare no-man’s-land as well) to Care. And, indeed, have been referred for Care by those “in the business” several times. This is inexcusable. Just look at the “Log”:

- July ’08 – social worker (s.w..), “H.” sends me letter telling me she can no longer represent me as she has been promoted; she will allocate new s.w.; she also lists things in the home the “live-in” agency would like implemented;

- Tom and I start to put the home “right”; T. the MS nurse, Link Line (panic button) officers and I begin on the myriad ’phone calls (someone rings at least once a month);

- December 16, ’08 – new s.w. allocated: “R.”; nothing at all from R., either by ’phone or mail; more phone calls from me;

- early May ’09 – I ring last agency and request prices on private care for a few hours a week; they do not follow up;

- May 18, ’09 – still not a word from R., I ring one day (T. in the meantime “bullying” as if it’s my fault – well, I admit I’m not keen because of perfume allergy but am/was willing to try again) and a supervisor promises she will get R., my “allocated s.w.”, to ring; not a thing, right up to the present moment…

And so it will go on, I presume, until such time as they do something; T. does something; I do publish and sell a novel, or the Good Lord decides to end it.

And meanwhile, forgive me, but I’m going interplanetary - to have fun and celebrate more of God’s creation (did you know, by the way, that one of the oldest observatories in the world is at the Vatican [and, yes, Catholics can accept evolution with the Creation]?). I’ll learn what I can about astronomy (it’s great for stretching the brain!) and chat to all the self-professed “nerds” in space forums. Hopefully, then, my novel will come together.

On SPACE.com where I am registered and try to take part, I have an avatar in the form of a cartoon astronaut. I love that image. There’s just one thing missing: yep, you got it, a little poodle!

“Come on, Lucy, get your suit on, we’re off…”


P.S. Of course, I won’t be able to go and see the latest Star Trek film (I hear it’s great) so, if any of you do, and would like to tell me about it, I’d love to hear from you.

Lost - in more ways than one!

[Sorry, took a while, but here’s the picture from Tom’s ‘phone (I must get a new camera!) to go with the two-posts-ago post.]

Poor little Lucy - who almost lost her life through that illness – recovering here with John Locke (played by Terry O’Quinn) - himself just back from the dead! - on the TV series (UK) Lost.

Ah well, I’d rather look to Christ’s Resurrection for my inspiration (hope you’re all having a happy Easter-time, by the way!) but, hey, I think this makes her quite a discerning poodle, don’t you?

Cover-up

I wrote this post (with a different intro.) to cover up the last one, all about another illness poor Lucy had to endure. I meant this piece to be more upbeat, cheerful – it is Spring after all – maybe about my little brother and the good guy he is.

But that will have to wait because, as it happened, this ended up pretty bleak too. “The dusty bird” (as I call our new local Registered Social Landlord [RSL]) had risen up again.

And I’d been meaning to say, I wouldn’t allow things to get any worse!

Still, Lucy – praise God! – was back to fighting fit. Me? I’d have to keep fighting… Even as I was preparing to post this, I had more problems with the mythical creature.

The gas dept. of our RSL (plain English now!) just would not accept that some of us – I – choose not to have gas because “they” are such a nuisance and forced the “nuisance” of the annual gas service on me, anyway. Thus, I was preoccupied for, at least a month…

I was determined they wouldn’t come in and they had even threatened “forced entry”! (Yes, I did threaten them with legal action and did speak to human rights lawyers and the Health and Safety Executive [guess whose “health and safety” were actually at risk - and it wasn’t because of gas of which there was/is, none here!]). I won in the end (I should think so: they could see it was disconnected in the meter cupboard, outside above the dustbin cupboard near the front door!) and we (Tom) just signed one of their forms stating what I had stated all along.

So that was that. And, even a post that wasn’t meant to be about what it was eventually about, was postponed by another aspect of what it was about (namely, the – “everything’s new to us, you’re just a guinea-pig” local RSL).

Any plans I had for an immediate brighter future dissipated into a cloud of dust-motes.

The following is what I wrote the first time brother Blob was put on hold (let’s get it out of the way – and, hopefully, never come back to it: I saw how, especially, building works, can put a brick wall between you and creativity back at the last – regeneration – address).

No more SAD (Seasonal Affective Disorder) - at least for the 2008-9 winter. And no more SAD-ness from me. I state that now and you can keep reminding me of it, as needs-be. I hope they won’t. But, then again, those “Improvement” works Lucy told you about, are on their way. I’ve definitely got a hard time to come, if it’s not already here: I’ve had to make countless ‘phone calls (getting nowhere) reacting to countless paper (none of it recycled which disgusts me) missives from them – our new RSL.

They call themselves Community Housing, and, while I admit, in theory, that’s a good thing – made up as they are, mostly from tenants – it does mean they possess the three ‘e’s most guaranteed to upset the elderly and infirm: excitement; enthusiasm, and energy. Not such a good thing.

Add to that, the fact that they’re all share-holders and you see why I envisage problems further down the line: save (the properties, and rents with increases); invest (i.e. with improvements and landscaping); sell (to a Private Landlord at an all-important profit)!

And, ah, well, I might know all this and it might be driving me mad knowing it but, thanks to the ever-progressing MS and all its dis-abilities, there’s not much I can do about it. I am not on a newspaper any more but rather, stuck here, immobile and so “allergic” to noise and disruption that trying to keep them away must take precedence. Ergo: countless phone-calls and stressing from a personal point-of-view, usurp any thinking and acting on behalf of anyone else. And I hate that.

But you’ve heard enough about all this and not only here (see also Comment Column). The “work” is set to go on for five years. I doubt I will. So, let’s all just keep watching this space and I’ll do my best to get Lucy and me out, before they take me out in the proverbial box. (To that end, in the last couple of months, I’ve: kept working on “best-sellers”; put in for a house-swap [but that was the RSL and it went wrong]; started playing the lottery online, and prayed, prayed, prayed!)

With you and your support, I don’t really see I can go wrong. Thank you, guys.

As I say to Lucy: “We’ll get there!”

P.S. #1 And I end up covering up a sad post with an equally “sad” (using the vernacular) one on a different subject? Oh dear, not what I had planned. I had hoped to write a post on “Uncle (my brother) Blob”. Tell you what, I’ll try to get that in, on top of this one!

P.S. #2 I would hate you to get the impression that all I do is sit worrying about – minor – bureaucracy. I certainly don’t. In the minutes when I’m not dealing with it – or Lucy’s health, or mine (in that order!) – I’m hiding in the fictions I told you about in November (NaNoWriMo). Writing make-believe for quiet escapism and a feeling (more pretence?) of total control. It gives me something back of myself.

Down and down, round and round we go!

[WARNING: if you’re not really a dog-lover you might want to ignore this one. I only put it in because I worked on it at the time – February! - and want it for my memory’s scrap-book.

Yes, February was a hard month. March was even worse. With the next few posts I aim to put those months behind us and, with Lucy, move into a better and brighter future… You’ve gotta keep trying!]


Oh my gosh, will it ever stop? What a spiral of decline Lucy and I have found ourselves caught up in. As if a black hole opened up as soon as Tom left and there was nothing we could do to get out of it because this place was it. A dark vortex where every thought brought an obstacle hurtling towards us and every movement, pure, physical pain.

We were being sucked down into it, lower each day, until we became it and our lives together just one, self-perpetuating, nightmare.

A bad place to be in, for too long.

So, what-we going to do about it?!

Well, first of all, let me tell you the tragic tale of Lucy’s latest health debacle…

With primary progressive multiple sclerosis (PPMS), my thing, all the symptoms stay pretty much the same. That is, there’s not usually anything new to deal with, it’s just the same old things, getting, progressively, worse. Every day.

But for poor Lucy, lately… Ah, it’s just been one thing after another. And all new. All different. And all alien to us (Tom and me) – who are human (!) and have never owned a dog before.

I guess it’s to do with her being pedigree and, therefore, too refined – delicate – bred from a few choice adults, as opposed to coming from tough stock, as say a mongrel might, with strong, non-incestuous parents (not that pedigrees are incestuous by choice, they’re often just closely related). Mongrels, naturally (the operative word!), are not designed (as some pedigrees are, i.e. toy poodles like Lucy) for their looks or roles as lap-dogs (for example). By natural law, then, they are more likely to have strong constitutions and remain healthy longer.

Poor Lucy, on-the-other-hand, chosen as a pedigree to ensure a good personality - which we certainly got - health-wise is the antithesis of some of the sturdier cross-breeds we see on our block…

Over the course of this blog, you’ve heard about all her other problems and the different ways we’ve tried to help (as little of the Vet as possible - I admit it - but then we don’t use doctors, other than for diagnoses, either). If we’ve been wrong ever, then I’m sorry, but we have tried – and we’ve worked hard (herbal remedies – see MS – My Scene – have to be carefully researched and do take quite a bit of preparation; but then, of course, they’re good for you and cause no side effects, so are always worth it).

Lucy is one of the family and, therefore – as much as possible – will be treated (intentional pun!) with the same respect we are (T. and I). Maybe more!

Which is relevant to the present ‘tale’ - or rather, under-the-tail - of woe.

Yep, be warned: if you’re not into hearing about all those ughy nether regions of a canine (and, Lord knows, nor would I have been, pre-getting to know Lucy [what is it they say, “All poodles are dogs but not all dogs are poodles.”? Well, quite. Perhaps I still don’t like dogs, per se – though, I concede, Lucy can’t be only good one!]), you’d better skip this next bit and move on to the end (where I hope things will become more salubrious!).

It goes like this… You know how dogs (and maybe other animals) sniff/smell each other’s behinds/bottoms? Well, that’s all (apparently – we didn’t know before this saga) to do with two little (kidney bean-sized in “toys”), what’s-called, anal sacs, which are glands filled with - what-to-us is foul-smelling - liquid to turn on, or off, other animals. I hope that’s correct. And I hope it made sense. But the thing is, where usually these sacs will empty themselves through normal defacation (and/or the groomer/vet will see to it), sometimes they don’t clear properly, get blocked, infection forms and an abcess develops. If that infection is then “allowed” to go unchecked (thereby spreading, via the blood-stream [septicaemia], throughout the body), the abcess can swell and in time, burst.

This is called anal furunculosis. And it’s what happened to poor, dear Lucy.

Looking back, I wonder if I couldn’t have spotted the signs sooner: difficulty going to the loo; itchy skin; head-shaking as if there’s some alien being inside you (well, I know that one from having infections); “attacking” and biting – just like an MSer (all right, this one!) when being annoyed at the same time as feeling pain.

But, as it was, the first time I got truly alarmed was when I saw Lucy’s whole posture change (her bottom and lower spine seemed to sag) and she felt obvious discomfort in that area, where I now understand the sacs/glands to be. (she started to chew at it). Scary stuff. I rang Tom and we both did what we could until two days later when, after leaving my lap, she left blood behind.

One torch and a magnifying-glass revealed more of what we were dealing with: not a season but this “abcess-thing”, next to the anus, with a hole in it and what looked like pus, mixed with blood, coming out of it. Very, very nasty.

At first we were all fear and panic and pity. But, sometimes, it comes out as anger with each other instead, which is silly and upsets everybody. All I know is Tom loves to remind me, that (because of my MS) I can’t really look after a dog and I know it’s true but, nevertheless, she’s here now, so let’s just get on with it…

I do all the ‘phone stuff and Tom does all the do-ing. He took her down to the Vet in the morning.

Brought her back, told me very little (so I had a day on Google!) and left for work and his - other! – home! Ah! Hard, hard, hard. Two of us again (Lucy and me) both crippled, both depending on each other – and God! – and both alone in separate rooms (it’s how she seems to want it – like a cat going off to die, I am sadly reminded).

She was in a terrible state – knocked out by lots of drugs the “man in the white coat” had - apparently, immediately - pumped into her and, without a doubt, very ill.

It was our (Tom’s and mine – and the Vet’s, I suppose!) mission now, to rid her of the infection. But with - all prescribed, all pharmaceutical - mega-anti-biotics (to kill her immune system completely)? Filled to the brim with anti-inflammatory, pain-killing and anti-dermatitis (side-effect, or did he just work out that she had that [as you know, we’d wondered.]) tablets? Bottom bathed daily in some evil (i.e. perfume) -smelling chemical solution?… I don’t think so. Not in this house.

No. Here, as in the animal world, things have to be more natural…

So, a couple of days into that (incongruous), laboratory list, still with a doped-up, not-eating poodle and following more research into the above-mentioned drugs and their attendant side-effects, I’m happy to report we took Lucy away from all that and put her on a similar herbal regime to the one I use myself against candida albicans (and did use to cure TB) – see again MS – My Scene.

I’m ‘happy’ to report it, because, here we are this evening – five days after it all began - and we have Lucy back in the sitting-room (T.’s here), bright-eyed and, not quite, bushy-tailed, but running about and asking for food/attention – even trying to sit on my lap – like she used to. As Tom says, “a nuisance [under his feet!] again!”

It’s brilliant. And, yet, one more reason to thank God for His miraculous herbs.

However, even if Lucy is truly well again and this last battle has been fought and won, it doesn’t detract from the fact that something must be done about this situation. It can’t go on, because, I know, I can’t go on – my body will not, for much longer.

So, what are we going to do about it? How are we going to heave ourselves out of this spinning abyss? We’re getting dizzy.

Well, I see a few ways we might:

- we could die (oh, to know the light and peace of Heaven!);
- we could win the Lottery (not much chance, I never do it!);
- any or all of my books (that I haven’t written/edited yet) could become best-sellers.

And there I’ll leave it, because that last one’s my favourite and the one I’m working towards, almost daily – against the odds.

Because dreams turned to goals get you out of bed in the morning. And that way we might just get out of here, away from all the Mammons, and, by God’s grace, all the way to Rome.

Where, of course, everything will be perfect!

P.S. My camera broke but there’s a picture of Lucy when she was just recovering – Elizabethan collar round her neck – watching Lost. It’s on Tom’s ‘phone and he’s obviously forgotten that I asked for it. I’ll remind him!

Keeping each other warm

Boy, oh boy, this has been a hard winter hasn’t it? (Even before this week’s snow in the UK, weather-wise it’s been the worst.) Short, interminable, dark days; freezing cold. Fear of burst pipes (one upstairs) and power-cuts. Bad enough for anyone, but for an MSer alone, pretty unbearable.

Not having another human being in the house, not being able to move around or keep moving… well, a couple of times already (shivering, etc.), I’ve been afraid hypothermia was setting in; and known it was a miracle when I made it through the night.

I feel – and pray – for anyone alone and in a similar position. It’s tough.

It is my faith, as you know, keeps me going (“Be not afraid”, said Jesus, and I keep repeating the words). Praise God!

And Tom who still pops in (stays sometimes) and helps - or hinders: it’s not always easy to know the difference!

But it’s Lucy who has been, unceasingly, and unconditionally the physical friend-in-need. Gosh, it’s so true what they say about loyalty and dogs, and in a poodle’s case – certainly her’s – well, they’re just so empathetic, so caring: she seems to sense every time I’m feeling my lowest, and to know by instinct whether I need her to be loving (cheering me up, maybe funny) or absent (when she’ll go to her igloo-bed) and quiet.

When my legs hurt so much that I’m groaning, this little, curly bundle will smother them in healing licks, which sometimes astounds me for its generosity of spirit. (Don’t tell me dogs don’t come from – or go to – Heaven. I believe Lucy is truly a gift from God.) And it’s so soothing.

She also makes (horrible to think of, but weren’t toy poodles designed for “ladies” in the cold chateaus of France?), an instant, and constant, “hot-water bottle” to lie in one’s lap!

Oh yes, she’s much better now. Seems to be over her head-shaking, ear-scratching (that Thornit powder is brillant – I recommend it!) problems and hasn’t “attacked” me since we took away the “liquorice” probiotic (just a bit of possessive “You keep away!” barking when she’s with Tom sometimes). All-in-all, a much happier, healthy Lucy, to keep me company on these cold, lonely nights.

Lucy has been a best friend (and me, who never liked dogs!). She’s been great.

***

And, you know what, I’m going to cut this piece short now…

Because I’m fed up with starting to write a post I want to get out to you, only to be stopped mid-way, by something, someone (often both and to do with the home, i.e. builders, repairs, neighbours) or MS its-bloody-self.

Yep, I’m feeling p---ed off with MS right now. There’s been a pressure-sore driving me crazy when I sit; I can’t stand due to collapsing, painful legs; the bladder and bowels never cease demanding attention (as long as we’re alive, I suppose [and if it’s not mine, it’s Lucy’s!]), and with fatigue making even thinking a positive thought too tiring, sometimes, if I do try to do anything (writing included, which breaks my heart) it takes too long. Time is running out. And I want to cry all the time because I’m cold.

There!

Thank you, God, for all the good things – and there are many. Thank you, Tom, for your unwavering (joke!) support. Thank you, Lucy, for being here. And, thank you all, for encouraging me to keep going and bringing me back to life whenever my head starts to decline.

I’m going to come and lie on this couch more often.

***

P.S.

A Haiku

I wrote this for Tom (he’s doing haikus in his evening class) one snowy day, when he was already having the afternoon off to come here and help with a delivery (would you believe, a second freezer?! I must tell you about the wonderful frozen food I’ve been getting…), and I’d asked, nay begged, him to stay in the morning.

My son said he’d walk
to work, through snow and on ice,
to leave my MS.

When I read it to Tom later, he added: “Yessir, climb mountains, and a whole lot more!” So kind.

You know, I’ve witten a few haikus about MS. Maybe I should put together a collection.

Belated Christmas and New Year greetings (plus catch-up!)

Oh dear. This isn’t very good is it, sending such a late Merry Christmas and Happy New Year message? But I have been thinking these things and, so often, wanted to stop and write you a post. It’s just that the whole of December (and now, beginning of January) was filled with horrible things (well, except Christmas, of course, which is, by definition, beautiful) to contend with; and I’ve only just got back any impetus to construct, rather than allow destruction. Which is what’s been going on.

So no, I haven’t been writing my magnum opus; not been climbing mountains for physio.! And, if you don’t want to hear about doom and gloom, you’d better stop reading. Because that’s how it might come across, even if I don’t feel it now.

And I do wish you all a very happy, what’s-left-of, Christmas and, most of all, peaceful New Year.

I’ve just realised how short the time is with the “twelve days of Christmas” being over on 6th January (‘inst.’!) so I think for brevity’s sake, a list is in order (which, anyway, will stop me dwelling and probably be easier for you!). Not good but here goes…

NB Bear in mind, still no word from Social Services (SS)!

- First week of December, Tom goes away for three days (somebody’s gig at Butlins, Minehead [can’t imagine anything worse, personally!]). Very difficult. Almost impossible for legs, etc. Fatigue, miserable. Didn’t speak to anyone till third night, then church friend. Brother B. – who I didn’t want to beg – apparently got impression I wanted to see if I could do it alone (no, that was last year B., things have got worse since then!).

- Lucy, very good. Had been giving her human dairy-free probiotics, now trying fancy, with herbs, designed-for-dogs culture. Seems to be going well. Also found an ear powder, highly recommended by groomers, etc. for itchy ears (mites?). So far, so much better. (Powder called “Thornit”.)

- I got into studying astronomy online. To help with my sci-fi novel! By the end of the third day I had applied to do a postgraduate certificate in science (astronomy) which could lead to an MSc if you wanted it, c/o a university in Australia. (This is the kind of thing I get up to when I’m left alone – I get so bored!) Never good at science; maths are anathema to me; don’t usually like sci-fi, but, heck, this astronomy’s fascinating (to know more of God’s fantastic creation) and I can always learn.

- Tom returns and brings with him that awful ‘flu virus that was going round. Bad chest infection. Keep away from MSers. But Virginia needs help – she’s practically immobile now. Tough, it’s either the ‘flu or no one. For a few hours then, please stick around.

- T. goes to work next day but by evening very ill. V., knowing it’s dangerous (see piece on respiratory problems in MS – My Scene), tells T. he cannot stay with her. He protests that it’s too cold at his friend’s house, he must stay. Maternal love clashes with MS common sense. If only he hadn’t left (last time he went, also got ill – same thing!). If only he still took herbs (the legal ones!). He is ill and bad-tempered.

- Five days after T’s come back and stayed, he is well again. Just as V. is starting to go down! No matter, T. is ready to party and he’s more-or-less gone, regardless.

- Right, enough of the third person!… So, there I was, as if hit by a ten-ton truck, feeling wiped out and with every MS symptom tortured and crying for relief. And there T. was, out the door (work and social life). Social Services? Might as well be non-existent – nothing, no news, no new social worker. In desperation, following one hard and sleepless night, I decided the only place I’d get the help I needed was in a care home (shows how ill I was!). So I rang the MS Nurse. And, oh dear, I wish I hadn’t now, because it’s a few weeks later, the ‘flu has long been better (nothing but herbs dear Nurse, who thought I might need anti-biotics!) and the hornets’ nest of SS has only just come to life, driving me crazy with buzzing activity and wanting to start everything again (assessment etc.). Sting, sting, sting. Every time we speak, there’s some mix-up or someone gets something wrong – or doesn’t get it at all – there’s always a sting! I want to run away.

- Good news though, just after I fell victim to T’s virus; and a huge surprise: I was accepted onto the (online) Graduate Certificate in Science (Astronomy) course. Wow! I was thrilled to bits. But slightly bothered by a nagging lack of confidence in my abilities (I really am hopeless at maths - they make me cry!) However, what an honour (Centre for Astrophysics and Supercomputing, Swinburne University, Melbourne, Australia). I decided I would work like mad – with help from brother Blob who is good at maths and science - and do as well as I could. I was excited. And still would be but, unfortunately, things have continued to go wrong. I didn’t think I could get organised in time to start in March, so have now said I’ll do the short six-week course this year and prepare for the big one, to begin 2010! Well, there’s optimism again. But the truth is really, of course, I just want to get on with my writing. That’s what’s most important. We’ll see, I’m still loving astronomy.

- And then, I think, we came up to beautiful Chrismas. T. was full of plans (as you know he loves cooking) and he planned lots of fabulous meals. (There was no doubt that he would stay here – we always said we’d be together at Christmas, wherever we were in life.) SS could be put on hold, most workmen would be on holiday (in other words, hopefully no building noise!), the neighbours here have always been good (unlike the last place), so I was looking forward to a good rest – I still felt weak from the illness. But, then again, it was the first year T. hadn’t made sure we had a religious Advent calendar, so things didn’t actually bode well. I should have known… And, although they started pleasantly enough (Christmas Eve and Day), come Boxing Day it did all gravitate downhill.

- Not only has poor T. been unhappy with all his trying to help me (and, with MS, the “job” never being done) which he lets show now, but Lucy started to attack me! Really. Hurtling out of her igloo-bed every time I moved to try to stand up or even ease a pressure sore, and, especially, if I raised my voice. Well, heck, isn’t that par-for-the-course with this wretched brain-damage (emotional lability) disease? To say nothing of T’s enjoying “winding me up”! I thought she was used to it (after all, I’m the one she comes to when she needs to relax – the one who’s actually calmest!) It didn’t make any sense. But we knew it started when she was lying in T’s room with him on the bed – “possessing” (as in “owning”) him. Was it only when he was here then? Oh, if only, but no. Sadly she has done it a few times when we’ve been alone.

- There’s no doubt about it, if she’d been an alsation or - perish the thought - a rottweiler, she’d have been put down. I could feel her razor-teeth through my slippers. We were going to take her to Battersea (though T., it has to be said, didn’t get quite as upset as me [or, as he should?] when she did this). Yet we kept giving her more chances. Decided it might be the sugar, which as liquorice and dextrose, was in the new probiotic, and took her off it. Maybe getting her spayed would be the answer? But then we read about this sometimes happening with poodles at this age, and, honestly, since Christmas Eve she’s only not attacked me one day – yesterday. Tonight she has and, apart from her, I’m physically alone. So I’m very upset.

- To add to all this (and I admit I’ve held back on some), I’ve nearly fallen down a few times recently (did I tell you about when I did, a couple of years ago and an ambulance crew had to come and pick me up – can’t get up alone, not strong enough?!). Hmm, perhaps Lucy picks up (nice pun!) on this and is therefore, insecure?!

One of the neighbours at our last address was a plump Italian woman who sang beautiful arias. Do you think she’s singing now?


That’s it. But, P.S. I’m sorry the ‘list’ idea went awry. (Just seems like a load of badly spaced, short sentences now)… Oh dear!

Happy masochist!

So, there I was on a Saturday (today as I write), sitting down for a minute’s rest, when I heard myself saying to Lucy: “I think I’ll watch a film this afternoon… Yes, I think I will. I’ll pretend to be disabled!”

And the very next moment I thought: “Ha! I should put that in the blog!” And look at me now: writing; no film; more “work” – MASOCHIST!

And, you know what, I’ve been thinking I am lately – a masochist..

For instance, this month – November: well, after I mentioned it to you at the end of my last post, I did register with NaNoWriMo (National Novel Writing Month) so that’s meant writing profusely and as prolifically as possible (about 2,000 words a day), ever since, in an attempt to reach the 50,000-word goal and, more importantly, have a novel to show for it by the last day [30th instant].

Alas, that idea hasn’t quite worked for me but it could have done and, nevertheless, there have been lots of benefits from taking part…

I started off with the novel premise in my head that had been hovering for about 10 years. In the weeks leading up to the first day, I wrote out a 10,000 word outline. The night before the big beginning – Halloween – brother Blob came to dinner, Tom cooked and the intention (from where I was sitting, anyway) was to celebrate the whole NaNo extravaganza, commiserate with Blob for not actually joining in (he’d said he might weeks before), wish Tom well on his new Creative Writing course and (incongruously on a night I had deemed “literary night”) watch – and admire – a video recording of Blob’s latest punk gig (no comment!). But the main aim, of course (at least from where I was sitting, and sitting and sitting…), was to wish me luck and say “Fare thee well - we’ll be there for you!” – as I went under, hardly to be seen or heard from, for the duration!

Ho, ho, ho! Not a chance!

Well, a little bit, it went that way. But, oh, I don’t know, maybe I was tired (already? Well, I do have chronic fatigue with this MS!) and I was, definitely, a bit weepy when Blob said things like, he hadn’t known I was in pain all the time, and he couldn’t see anything wrong with euthanasia (dear Tom saved me there when he exclaimed: “Blob, haven’t I told you before: you have to leave your opinions outside the door when you come here!” Ooh, I didn’t look too good, but it did make me laugh.)!

The meal was great – good old Tom again and his culinary/hosting skills (he even had sweets ready for “Trick or treaters” – and then ate them when I said I couldn’t condone that!). Salmon curry – just to get me going (always the brain-food, don’t you know!). We played a nifty game of poker (I lost – can’t hide “tells”!). But…

Well, Blob and I talked a bit more about the novel, after Tom went to bed (he works Sat.). And I thought it was all systems go. But…

The next morning, sitting there with my tabula rasa, meant to be starting the novel-proper right there and then, well, I couldn’t get the Blob comments out of my head. Couldn’t believe there was still so much ignorance about MS, even in my own family.

And, because I’d mentioned, the night before, another book I’ve been trying to edit and get going again, Letter to a Son (written to the son “I” had adopted in 1969, mainly about Tom, the brother he’s never met, but, also, just about things in general – the way I do in this blog), I decided to go on with that (as Part Three). In other words (2,000 a day!) be a “NaNo Rebel” - as they call the non-fiction writers there. And that’s what I did…

Dropped the novel idea – at least, I thought, till I’ve finished the “memoir/journal” – and returned to the Letter.

And I was doing well (still no carers, Tom so absent, had to invest in a top-notch, 24hr-stays-hot Thermos flask; Lucy still not perfectly fit!), exhausted at times, stimulated with adrenalin pumping at others: doing well. By day eight, I had 15,000 written and was quite pleased with it (though I hated putting away the “inner editor” and was slightly concerned that I might not get time – in life – to tidy it up afterwards. Oh well, it was okay. I was on target. It was a fun thing (c. 120,000 taking part around the world; buzzing and informative forums to chat in) and just the universal vibe of writers together – great stuff!

You could hear it coming, couldn’t you?! CRASH! Bang. Wallop! Oh heck: the TV had broken at the end of October (wouldn’t you know it?!); “they” couldn’t bring a new one till mid-Nov.; Tom had to time it with a day off; I couldn’t manage without it; took “the man” a whole day to deliver and set it up!

Result: me needing time to recuperate; Tom at home (he would disagree with my use of semantics there – tough, I won’t change) for a couple of days, and lots of TV to watch! My “rest” went on and on. And then on reading a second email from Chris Baty, the founder of NaNo, well, I really wished I was being true to the spirit of the thing and writing my novel. He had so much good advice (as he does in his NaNo book) and I felt it would be great to be in tune with what he was saying. So I went back to the (science-) fiction...

And let the inner editor out.

And so, now, I’m kind-of out of the running to be a NaNo winner (no prize, just the title!) but have written easily 2,000 words every day and do have a novel coming along; will go back to the Letter; do have an idea for next year’s NaNo, and am happy, really, just to be more prolific and busy. Most of all then, I am grateful to NaNo.

So, that’s where we are. It’s not good, in terms of needing help, I suppose. But I don’t really want it (officially) and am making the most of all the time alone, writing; which is what I always wanted to do and keeps the boredom demon quiet.

And I know that’s not fair on Tom. But, hey, he gives me a hard time, I’m not going to beat myself up more over it. And, besides: what, for instance, if he was an Indian son, or Chinese, or… just a better Christian. He might be happy to help!

I guess I’ll go on like this a bit longer – while the Good Lord lets me, anyway.

And, quite honestly, be glad I’m a masochist. There’s method in my madness!

God bless.

P.S. Just said to Lucy: “Didn’t watch a film then!”

P.P.S. Not sure if I told you but also did get a freezer and microwave recently: yeah, pretty useful!

So, what haven't I been telling you?

Ah well, I bet some of you guessed. All this focussing on poor Lucy - could it be allegorical?, I’ve heard the voices cry. And I have to answer, oh yes. Of course. At least half of it is a cover-up for my own sorry state – even to myself.

But, then again, it’s not really one story to tell another [allegory] but, rather, one story (Lucy’s) running parallel to another (my own). Neither of us “enjoying good health” at the moment – oh, okay, the past couple of months! Since Tom left. There, I said it. Since Tom left, Lucy and I have been going, kind-of, downhill. But hey, has anyone reached the bottom yet - crashed (there’s a word the MS Nurse likes!) and made a conscious decision to stop trying? Hell no – there’s a light at the top of that hill and, I hope with Lucy following, I’m still aiming for it. Even if, only metaphorically!

And so, what have you got now? Well, to be honest, two cripples, limping (Tom trod on Lucy the other day and ripped another [he’s done it before - Vet says: “common accident”!] long nail from her paw (oh, muchos blood!)), and I – on top of my normal spastic gait – have a twisted foot after rushing after Tom – who had whisked L. to the Vet the next morning without a coat or carrier – and tripping over the metal threshold of the kitchen door! Lucy’s head is still “shaking” (see previous post), and I, who have also developed asthmatic or COPD problems and nearly died the other week, haven’t had a shower for… a while.

We do not have carers. Nor even a social worker (did I tell you how “H.” wrote me a letter, in July, telling me that due to her promotion [manager] she could no longer be my s.w. but that no one has taken over or will get on with it when I call? Heck, that should be a whole newspaper article one day – and shame on me for not doing it yet.)

The trouble is, as you know (and so do they!), I can’t tolerate “carers” (I prefer the name “helpers” – no body cares) beause of their perfumes and my Multi Chemical Sensitivity (MCS) . I wish I could sue Procter and Gamble [Ariel/Bold washing powders; etc.] for a start!). You know, I wouldn’t be writing now – or any time – if I was having to breathe that in all day. I’d be in a much worse mess, physically and mentally.

The problems with not having them (carers - see how annoying that word gets?), of course, are that: it’s much harder for me physically (that’s not an oxymoron with above) and might be impossible one day; I have to spend more time humanly alone – and nowadays that seems to cause panic and asthma; Lucy misses Tom and gets spoiled when he’s here so that she’s even sadder when he goes again (ditto me?!), and the worst thing: Tom is desperate to get rid of the whole schibang (my situation – me), ergo, he’s getting mean.

And there’s a boy who started off as a saint. Really. Always the kindest person (as child and adult) anyone could wish to meet. It’s the tragedy of MS and diseases like it - where no one gets better nor ever will (degenerative) - that truly, the rewards for any care-givers are invisible. If they don’t have a religious faith they will not see that their efforts are appreciated but only feel impotent as the patient’s condition worsens. And it will be soul-destroying. (No wonder in this secular society of ours euthanasia is being so touted as the right way to [pun] go!)…

Ah, but what if the patient were actually smiling? If not on the outside then inside, filled with joy? Who’s to judge whether anyone – no matter how hopeless their state seems to be – because of, and with, their own beliefs, might not be perfectly content (as long as comfortable) to leave this world and move on to the next? In an atheist’s language: to be dying. No one can know that isn’t how it is – on the inside. Happy!

And that is why euthanasia is so wrong. And why a care-giver should always have hope.

And so one tries! Surrounded as I am by the paintings and statues of the Christian tradition – reminders of the family we strive to be near and the Heaven we long to be home in, one day. I try to be a witness to their assistance in my struggles and to keep smiling – visibly, to show my gratitude to Tom and convince him of the value of his help and prove I don’t mind.

But, of course, this is MS. With all it’s emotional lability (which, literally, is brain-damage) and it ain’t always pretty! In fact it can be positively nasty: laughing/crying for all the wrong reasons; neurotic; panicky; quick to explode in temper (pain doesn’t help!); loud/timid/exceptionally nervous; insecure; anxious; afraid. It goes on and it’s difficult for anyone to deal with. It is often unrecognisable, even to the patient – in this case to me.

As someone who does have a faith, this, can only be the work of the Enemy.

To others unjustified, it leaves you looking like a hypocrite, feeling guilty, and very alone.

This is multiple sclerosis, in all it’s sclerotic glory: eating away at the essence of who you are and maybe finishing only when there’s nothing left of worth.

Except what God can find in your intrinsic dignity and the prayer you leave behind on the silent air-waves.

I guess what I’m trying to say – in case you thought I’d lost it and got my blogs mixed up (I do have a quiet one called Pure Catholic)! – is that, no matter what happens to me - or how - no matter if poor, little Lucy has to go and live somewhere else because I can’t cope (but I’ll do whatever I can to prevent that!), then this will have been worth while.

Tom should be a saint, for how much he’s tried. (Oh yes, and last night, as he cooked another of my favourite fish curries, I sensed all would be well when we were discussing – as one does – the media and verbal engineering, and he told me [I paraphrase] that a NIB he read stated (allegedly!): “When this country was religious, people used to care for each other; now, in the modern age, nobody does…” – as if to say, there is no religion any more. God has disappeared as being an old-fashioned figment of our imaginations. No one believes. And Tom was incensed by this, by the message it put across: “I’d like to ask them to imagine a society where, truly, there is no religion. Can you imagine the anarchy and nihilism then? Oh I think,” he continued, “they’d have to admit, there are a lot of religious people now!” Good point, I thought. Clever… Yes, I see a lot of hope for Tom!)

And I am looking forward – though I don’t long for it/need it hastened – to the end, which, I believe, will be a beginning. No worries when I’m gone.

***

Right, I’m off to work on the MS blog for a bit – the “MonSter” having finally got me! And I might even try to write the novel I meant to write (NaNoWriMo in November!) so I’ll be away for a while.

But, even if I never come back, know it’ll be all right. And I love you.

God bless.

Virginia

Luc(k)y we threw those drops away!

Fortuitous or blessed? Well, I know which I believe – especially after all the prayer that went with it – but anyway, phew, that was a good decision, to get rid of the vet’s ointment for Lucy. Anti-biotics and steroids! Hah!

It should have been easy, would have been for me alone with my ingrained antipathy towards these drugs – as I’ve said over and over, I’d never give them to humans – but, when it comes to Lucy, I have an adversary in the house (when he’s in the house!): Tom. And against him I have to continually be strong.

Oh, he only wants the best for our little canine friend, but sadly – and badly in my opinion – he doesn’t have the confidence to realise he might know better than a vet. Not in all things related to animals, no of course not - just as with people-doctors, when it comes to anatomy and surgery, for example, I believe we should bow at their feet. But pharmaceuticals? No. You see, again just as with doctors, they haven’t studied chemistry and don’t really know about these things, except, like us, through their own experience. To a certain extent they have to trust the drug companies. I don’t blame the vets or doctors for side-effects. But Tom and I know about these things – from experience – and have learnt. And, not only that, but Tom has worked in a herbalist for fifteen years - I have used herbal remedies as long. I do think, in this context, it has to be possible that we are better qualified than vets and doctors. (E.g. as chickweed out-did hydrocortisone on my eczema/psoriasis - much to the astonishment of GP/neurologist/relatives.)

And the reason I think Tom’s lack of confidence is ‘bad’? Because I don’t see the reason for it [apart from things like genetics which is too tedious to go into here, and alcohol which he hasn’t given up yet!] And it kind-of breaks my heart.

The thing is, that, after all that – and pouring the stuff into Lucy’s ears at the surgery, against my instructions over the ‘phone but, presumably, with Tom’s polite acquiescense – the vet had made completely the wrong diagnosis. And, consequently, prescribed a dangerously unnecessary “poison”.

When I spoke to A. (the vet) in the middle of the consultation, I had asked him to do a culture test so that, before prescribing, we might know the exact cause of Lucy’s itching/inflamed ears and, therefore, the correct (if any) measures to take. Well, it took over two weeks to get the result from, in the end, a receptionist (we’d have long finished the course of drugs if we’d used them) and, guess what? No bacteria. No yeast. Not even any mites. No, that “Canaural” (as it is called; note: ‘prednisolone’ [one of the ingredients] is a steroid) would have been nothing but detrimental to Lucy’s well-being! What a nonsense. [And even worse, when I consider the cost – we had to pay – and the fact that you had to specifically request said test. How many would not get this done through lack of funds or ignorance of such procedures and, so, not be able to help their pets? This really upsets me and is, largely, why I’m writing now.] It looked – just as I knew it might – as though Lucy had an allergy.

So, a referral was made to a skin specialist (more money for vets and insurance companies – yes, Lucy is insured) but, of course, first (with the help of more research and, again, our own experiences) we are trying to find the culprit/s ourselves!

And – as with us – the immediate concern is with food (“You are what you eat!”). Now, because we already had L. on a (dry kibble) hypo-allergenic diet, this meant looking, even more closely, at individual ingredients. And that’s where we are at the moment: trying a new brand of food (from Burns Pet Nutrition – great web site full of helpful info.; friendly staff at end of phone), minus beet pulp, with even less meat protein and plus a lot more oils (vegetable and fish).

Beet pulp! Used as a fibre (apparently!). And renowned, in my research circles, for causing just the sorts of ear problems (which later added violent head-shaking) as we’ve been experiencing – suffering – with Lucy. I am every excited about the, now lack of beet pulp, going into L’s system!

What was it Hannibal (George Peppard) famously said in “The A Team”? “I love it when a plan comes together!” Well, ditto! There’s nothing I like better than looking at a problem and finding a solution or, seen from another angle, turning chaos into order. These are the challenges I thrive on (hence my own diet and herbal regime I suppose [see MS – My Scene]).

And I have to say – a couple of weeks after the change - so far, so good (Lucy loves the taste of Burns’ main food and treats, and is scratching less already). It bodes well, I think…

P.S. The picture shows Lucy after a trip to the groomer's. And yep, that is my knee!

Talk therapy

[New title added, intro edited, 21st October.]


Sometimes, while I talk, Lucy gazes into my face, listening. In exactly the same way I know Charley must have done with Steinbeck (Travels with Charley). And nothing could feel more right.

No human could muster such eye contact. No man’s ears twitch with such eagerness to hear. And no one show quite so much enthusiasm as a poodle when the tempo rises and empathy shares - when they feel the same adrenalin rush as you.

There is no greater friend. Nor confidante. And maybe it’s true that it is only the tone they respond to, but, in a poodle’s case anyway, there certainly do seem to be a lot of tones/sounds they remember – and not all of them self-serving! Indeed, it appears to be the words themselves – at least for Lucy – which serve as the key to memory and retrieval of the correct response.

Words like: “Kibble”; “dinner-time”; “fresh water”; well, of course, she knows those well. And: “bed-time” (which she enjoys); “toys”. But: “Excuse me!” and she moves herself away when I’m trying to walk? Recognising when we say “she” and are talking about her (looking up, tail wagging, ears pulled back [floppy ears can’t ‘prick up’!] to attention)? These things amaze us.

Oh heck, I’ve always known she can speak English. She just chooses not to, most of the time!

Anyway, I’ve been thinking, lately, about the way I talk to Lucy. For a couple of reasons: 1) because if I didn’t I’d be talking to the walls and/or outloud to Jesus (what, I don’t do that already?!), and 2) it suddenly struck me that Tom doesn’t.

That is, he uses sounds and not words when addressing Lucy. Now I asked him about this, and his reply left me speechless:

“Our [his and Lucy’s] relationship is special on a primeval level!”

Oh, of course he was laughing. It was tongue-in-cheek and meant specifically to annoy me (the Darwinian thing, as well as reminder that humans normally talk to humans!), but really…

Our poor, little poodle has been unwell lately. Not surprising when, following three weeks of nerve-jangling builders’ noise upstairs, her favourite family member (and food-provider), Tom, left home. (To say nothing of “Mummy”’s ever-progressing multiple sclerosis [PPMS] – bound to have an effect.) Her security and routine were undermined, and it wasn’t long before the emotional upset revealed itself in physical malady.

First it was messes – on the carpet. Not even trying to hit the “toilet-tray” (f’s & u; p&p [do we need to name them?] – difficult, and dangerous [falls], for me to clean up).

Then, her second "season" which seemed to go on and on (three weeks – and, yes, I am reconsidering spaying). It exhausted even me (empathy, and worry about males in the “’hood” [canine]!).

And finally, before the estrus (that’s what they call it, the very bloody bit) was even over, with defences down, she was pounced upon by an ear infection: bacteria and yeast - they don’t come much nastier, or more parasitical, than those two hoodlums!

Itching and scratching. Itching and scratching. Out came the loathed Elizabethan collar and in (to the body) went the increased garlic; on (to the flesh) went the calendular (marigold – antiseptic, strongly anti-fungal/itch and healing) ointment. But it was unceasing - drove us all crazy – and was, of course, most distressing for Lucy.

A visit to the Vet was reluctantly arranged and off went Tom with sad, toy poodle in tow (carrier). But not before a ‘phone call from me to lay down the groundwork (“absolutely, no steroids”)!

Well, of course, that was completely ineffective, because the rotten Vet – who obviously hadn’t received my message or heard it from Tom (?!) - apparently, poured his bully-boy anti-biotics/steroids straight into Lucy’s ears. And then suffered the verbal wrath of Yours truly, straight down the ‘phone into his! I was furious (see MS – My Scene for why I wouldn’t give steroids or anti-biotics [except in an emergency] to my worst enemy, let alone - like Lucy - my best friend).

Anyway, she came home, the poison (did I mean potion?) went in the bin, and off we went with incensed/increased vigour on our herbal attack.

For an anti-inflammatory we used chamomile essential oil (also anti-fungal). We mixed that with garlic (anti-biotic) oil and based them both in extra-virgin olive oil (antiseptic/healing). It may have taken longer than prescription pharmaceuticals to see results, but dear, litle Lucy is perfectly well now (a couple of weeks later), without side effects and we I know, without her immune-system being compromised (take note, however, things were a bit smelly!). Thank God for herbs. (By the way, while we’re at it: eyebright, not only for your eyes but also for dogs’ - excellent, even in conjunctivitis).

And this is where I get back to the issue at hand: ‘talking’ to Lucy and, by extension, all animals because of my conviction that talk-therapy (as I bet all MSers agree) is a prime healer. At the very least, it will promote endorphins to camouflage pain.

Ergo, when Lucy scratched, I would say: “Lucy, please STOP scratching, you know it makes things worse.” But Tom would shout: “OY!” Where I call: “Come on, Little One!” Tom will whistle, shrilly, as if she’s an alsation outside. And, when I sense stress, soothing: “Don’t worry, it’ll be all right.” Tom… blows raspberries, then puts on drum and bass!

And so on. And you-know-what? This is exactly the way I did it bringing Tom up, as a single parent (heck, I even taught him to read and write by the age of three!). It works…

When Tom was a baby, I went into hospital for a week and he went to a foster-family to stay. He had recently been in hospital himself with pneumonia and I had gone for a “rest” (like a rock-star!). Anyway, while he was at this other house he developed another bad cold – everyone (i.e. the family themselves, the social worker) - thought he should stay there till he was better (I think they’d all thought I’d be away longer) but I said no. Our place was far from luxury, it wasn’t even carpeted or very warm but I just felt that it was the being separated from what he knew best and – in his case – his own birth-mother that was causing the upset, so we brought him home. I talked to him none-stop, he slept in my bed and he was better within days, it was wonderful. I have never been more sure of the power of love than I was then. And I will never forget it.

And so I apply the same logic to Lucy and the discourse shall continue. With time, God willing, she’ll get used to the new routine (is there one?!) and settle down.

But, here’s the thing, am I really writing about my chatter to them or their helping me by letting me chatter? The more I think about it the more it seems I’m the one should be saying, “Thank you.” After all, by talking to and worrying about Tom and Lucy, my mind has been taken off myself.

Mahatma Gandhi (1869-1948) said: “The best way to find yourself is to lose yourself in the service of others.”

Oh, how true.

Bloomin' poodles!

Just in case some of you were wondering whether I was even aware it’s summer – that last post being so (literally) cold and under the weather - I thought I’d present you with a bouquet of chrysanthemums, full of good cheer and bonhomie.

Because that’s exactly what chrysanthemums stand for in the language of flowers: cheerfulness and to tell someone, “You’re a wonderful friend.”

Which is why Lucy thought they were for her!


Have a great summer! (Oh and, yes, I do know chrysanthemums bloom naturally in the autumn, but, well, the way the world is, and they’re so sunny. [Plus: I can’t get to the roses at the bottom of our garden!])

P.S. Fellow-MSers, if you can’t keep cool just be cool – that’s all that matters!


Credits (!):pictures and blogging by Virginia; picture editing by Tom.