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
Tuesday, 29 March 2011
Wednesday, 2 December 2009
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…
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.
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.
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 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.
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.
Friday, 17 April 2009
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?
Thursday, 16 April 2009
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.
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.
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