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.

Wednesday 5 August 2009

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.

Friday 5 June 2009

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 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.