h2g2 The Hitchhiker's Guide to the Galaxy: Earth Edition

A bit of an update - and no, I STILL haven't heard from the DLA - I'm waiting on their Appeal Procedure, which is another whole saga all on it's own.

If you feel you can stand it, feel free to have a riffle thru my diary entries. They're all long and convoluted, but do, eventually, bring you up to date.

Good Luck, and bless you your energy.




Werl... I've better weeks, I must admit

Frankly, I've had better years if I'm honest.

This rather twee theory that once you've had a run of Bad Luck it must mean that after a while Life evens things up and you get a run of Good Luck is not actually happening

Sure, you make your own luck - and I've grabbed every opportunity I can see to ensure Stuff happens. But unfortunately, there seems to be less and less Good Stuff to grab - and an unlimited amount of Sh*te happening.

O-K

I've already mentioned (in the thread "Glad you made it to Pudding") that I'm in a spot of bother with the Local Council - they're the bods that pay my Housing Benefit. It's my own fault, I suppose, because I didn't let them know immediately, if not sooner, that Eldest had started work and was earning a pathetic pittance of a wage as a Kitchen Worker.

There were several reasens -

1) To begin with, we weren't sure if it'd be permanent, Kitchen work being notoriously casual and seasonal

2) Its my name on the Housing Benefit agreement, and on the tenancy agreement, so therefore *my* income has not been altered

and 3) I've discovered that, whoops, the painkillers I'm on not only have caused the brain to work a lot slower than it used to, it has banjaxed the *awareness that the brain is cream cheese, and although it was one of those jobs I've been meaning to do - telling the Council, that is - I never got around to it. I simply haven't had that many "good" days, and frankly, when I *do have good days I tend to either catch up on housework or actually go out and have a bit of a Life.

(I know; A Life is not something I'm technically supposed to have, but hell, I'm human; I certainly don't spend a lot on a social life, because I make sure the bills are paid first. I may be a bit late - but they're all paid eventually)

Oh yes - and my rent was increased last October. No problem. But the Council didn't increase my rent allowance (by a paltry 8 quid towards a £25 increase) until April of this year - so for six months I was out of pocket. And no, I didn't get the blasted thing backdated, either. The council only do their adjusting "once a year".

It's the Rules, apparently. There is No Appeal I was told. Take it up with Mr Brown or Mr Prescott - we're only humble Local Government, enforcing Central Government's rules. You can't blame Us.

I don't "blame" anyone. Life's got lumps - but I am a tad sick of getting more than my fair share of the dirty things.

I managed, I coped, but about 5 or 6 weeks ago, one of the Housing Benefit Officials came round to inspect my rent book and ask about any changes. Like a dodo I mentioned my son had begun work.

And I was asuured that there would be no problems now that I'd explained why I hadn't mentioned it sooner - for the reasens I've already stated.

Like Hell!

On checking my bankstatement I find that the following week my Housing Benefit had been stopped. There were no letters or phone calls telling me what was happening, and neither were there any communication telling me that I hadn't provided enough evidence of earnings.

It just Stopped.

And will remain suspended until their Investigation is complete. Which I find can be up to 2 months after my interview - which was Tuesday just gone.

And at this interview I was assured that their decision "wouldn't take long" and they were satisfied my reasens were true, if a little muddled. Mitigating Circumstances and all that.


Today my Landlady called on me.

A real live visit by a real live landlady - who isn't best pleased that I'm behind in my rent and appear to have no means of paying for a couple of months

Except for my son, bless him, who is getting as much work as he possibly can do to get us out of Thingy Creek and find the means to hire us a paddle to get us out of the situation.

Like I said, Kitchen work is notoriously insecure and badly paid, so there's no guarantee the poor kid can *get extra shifts. It's great he's willing to take on responsibilities like this; But it's complete role reversal - he's taking on "my" duties. Very laudable. What annoys me is that Central Governemnt assumes all adult children *will do this - when in actual fact, its only a moral obligation, based on respect and love for their parent, and *not a legal obligation. After all, it's *my name on the contracts, and not his.

He's looking for a better paid job - but again, if his wage increases then he simply has a proportionate amount of contributions to make, so he too is stuffed.

And I feel impotent and helpless because there is no way I can actually work due to a lousy spine and an infinate amount of pain. And there's no hope of a cure - just poor pain relief. And stress, stress, stress - I don't care *how relaxed I feel about the situation, lets face it, it isn't going to go away, no matter how calm I feel about it.



(So I may not live longer than the rest of you - but it's going to *feel like I am doing)


Anyway, to cut a long story short, Mrs Landlady listened to what I had to say, checked my paperwork, and says she'll put pressure on the Benefits Department to get their fingers out, and tell them if she doesn't get her rent on time it's me for eviction

In the meantime, I'm to pay off as much of the rent as I can as frequently as I can, and tell the Council the same story. As long as she sees I'm showing willing, I'm safe. For the time being, anyway.

She also suggested that I change the tenancy with her to Joint Tenancy with the Eldest. That way, when (and if) I ever get rehoused by the council, he has a safe home to live in.

I'm not sure if he'd be willing to share with his brother, but the youngest could have a home with me if needs be until he gets sick of a poor atandard of living, (which he is already) and Foxtrot Oscars off.

Although he's a dead weight; and despite the fact there's only 15 months between them in age, Youngest is a very VERY immature 17 yr old.

I didn't christen him Kevin, but I might have well have done.

Mrs Landlady's being extremely reasenable in the circs - fair enough, she wants whats due to her, but at least she has the decency to accept my explanations and give me a small amount of breathing space.


On the plus side, due to a lot of belt tugging, I am confident I can get totally up to date with the rent by the due date this month - and not to the detriment of paying the utilities, thank god. If I don't eat, then I reckon I can just about manage.

And no, I'm *not being satirical. I'll scrounge the kids leftovers and drink lots of tea. I've done it before, when they were very little, and I'll just have to do it again for a while.

On the minus side, unless the Council makes its decision rapid, short of the Eldest working himself into the ground, I haven't much hope of managing for much longer.

And, ironically enough, because of the piankillers and their cumulitive effects I was beginning to relax and began to gradually improve. Very slow improvement, but I wasn't in as much pain, because I was finally physically relaxing. Because I wasn't aware of how serious and potentially "down the slippery slope I go" of the situation. I felt less physically stressed because my mind wasn't aware of what was happening, and potentially *going to happen and I wasn't mentally alert enough to deal with stuff in a time scale that was better suited to me. The spirit was willing, but the body was lagging behind a lot.


I know I'll cope, because I've always managed to cope. I don't intend stopping surviving just yet.

But I'd have liked it to have been *me that coped, and not have had to share the problem with a young lad of 19, who in theory, ought to be working souly to support himself, and enjoying life.

Just as *I ought to have been able to do, had it not been for a large stroke of disaster in the form of ill health. I haven't decided to opt out of working - I'd love to; I'm trying to retrain and get myself well enough to put back something to a society that has shafted me

Something along the lines of From each according to his means, to each according to their needs.


I read somewhere that a society's compassion and civilised behaviour can be assessed by it's attitude and behaviour toward its less advantaged members - the sick, the disabled and the truely disadvantaged

I'll leave the reader to decide which sort of society I live in.












































"

Oh Bob!

What a bunch of James Blunts the Council are.



RF

That phrase did cross my mind, too RF

Never mind... come the revolution, it won't be the lawyers I'll be voting for

Fank you for the Muchly appreciated

Hmmmmm..

I am going to have to deal with the Council for my Dad..the stoopid B's seem to have forgotten that he informed them of when my Mum died (over a year ago).. they still haven't sorted out his Council Tax. Today, he received his 10th letter!!!...

..sorry I am angry and rather squiffy about it now


lil xx

No prob Lil - have a tope for me (I'll just stick to being angry for the time being. Or at least baffled)- and good luck with your Council sorting out.

A word to the wise - photo copy absolutely everything, and keep a log of any phone calls you make, preferably with the name of the bod you deal with.

Will do hunny..and thank you for the advice..

I'll be back, oh yes...

Hello there, I'm quietsoulsearcher. The condition I have, I've had since birth. But the dozey of an excuse for a GP said 'it's growing pains, she'll grow out of it, she's a hypochondriac, there's nothing wrong with her' this was despite the midwife and a child health specialist (which I don't think you have now) saying something was very. very wrong. No child should be able to stick their legs behind the back of their neck and cross them. As I've got older i've been unable to do this. You may be asking what I have. Well, are you ready? Once upon a time, long, long ago (well, not that long) it would have been called 'rubber people' and I would have been in a freak show. Recently it was called double-jointedness. In fact what it really is is joint hypermobility. That's not the real, real problem (although it is a problem in it's own right). Some poor souls are wheelchair bound by the hypermobility, but I digress. Fybromyalgia, that's the real problem, the thing that robs you of quality of life. Stops you going out and having fun in the evenings, although I'm a pretty quiet soul, as my name suggests. The fybromyalgia is kicked off by the stress in my joints, it's not a very nice condition, the more difficult of the two to live with. I don't cope, really I don't. I put on a brave face, I laugh, I joke. But quietly at home under the duvet, I am a small frightened animal in a lot of pain. There is nothing I can do to make this pain go away, I have it 24 hrs a day, 7 days a week, 52 weeks a year. Sometimes the pain is mild, just a nuisance, sometimes, I have just had one of these- In my case, because of an ignorant employer, it literally cripples you. My husband says that I have great determination and strength of character to get up every day, manage as I do and cope with the pain, the nausea and the tiredness (which is sometimes exhaustion). I don't understand this, I really don't. I really don't know how I cope either, how I continue, how I go on. I know this sounds depressing, but I don't know to be any other way than honest.
What do I do? I carry on, try to act as normal. I refuse to accept I have it- it has me! Yeah I see people who are worse than me, when I go to rehab I see people paralysed by strokes, really bad accidents, and I think 'I shouldn't be here, I'm not as bad as this- am I?' But yeah, I am. Imagine being 32 and already you feel like 90 some days. People say to me 'you can't have joint problems at your age- you're too young'. Yeah well, I've got one. I've got to live with it. There's no cure and for me, no painkiller. That's the real bummer. I have TENS machine, that helps some, but when you get muscle spasms and knots, the only thing that works is good old manual stimulation and massage. Thank god for husbands! I too decided not to have children, but in my case the decision was already taken from me, whether I could have them or not, it is inadvisable for me to carry them. My pelvis is the same size as that of a ten year old boy (apparently) so to begin with it would have to be a cesarian, but that's before you count nine months of agony and misery. Possibly wheel-chair bound or on cructches, plus injections, no thanks. Plus the possibility that any child of mine would more than likely be in a wheelchair. I can#t put that on another human being. Stuff what mothers or mother in laws say.

Quietsoulsearcher.

Quietsoulsearcher

- I've got what you've got, as well a degenertive spine, artheritius and a whole host of whathaveyous joining in.(whizzle over to my journals and also the first page or two of this thread if you'd like to compare symptoms!)

Yep - it takes determination and sheer bloodimindedness to cope. but honestly, don't panic about any potential off spring. (Again, see my rants about my two lads) You're only one of a huge gene pool, so if you can, go for it! Pregnancy doesn't feel any worse than the complaint we've got, and there's a strong liklihood that the sprogs may not automatically inherit, after all.

And if they inherit (as my eldest lad has) they cope just as well, if not better than we do. They do, after all, have an example to watch and improve upon.


And frankly, birth's a doddle in the terms of pain. I never understood why *normal* women winged about it. Its just a Day in the Life, really. No worse than a severe period pain, if that, in my experience.

For what its worth, you arn't the only one, so if you need as wail occaisionally, shout.

Ironically enough, a mate of mine who also has a Back and Allsorts has just left, after watching our local Carnival from my flat window. (It was dreadful, as it annually is. Gawd knows why we watch it; I suppose its a vague hope that each year it might improve, but it hasn't yet)

After a lot of vodka(which she brought round with her) and a deep meaningful discussion, we've decided, despite out backs we're a damn sight more normal than yer average bod. We're certainly more *aware of stuff, if nothing else!

Somehow the extra challenge brings out the best in both of us.

So hang on in there, and please excuse the rant.

Mitigating circumstances and all that............

First, an apology for a hopefully interesting tangent (I also admit I did not read all the previous posts). My wife & I recently watched the 2005 documentary "Murderball":

"A film about quadriplegics who play full-contact rugby in Mad Max-style wheelchairs - overcoming unimaginable obstacles to compete in the Paralympic Games in Athens, Greece."

http://www.imdb.com/title/tt0436613/

A great doc, 8.1/10 at IMDB pretty much tells the story. A quote from a player (who mostly have had accidents, but I think some are from illness):

"We're not going for a hug. We're going for a ******** gold medal."

These guys are athletes in every sense, and some are pretty intimidating.

Some inspiring stuff here!

I think "we" end up being pretty tough cookies, but we don't have a lot of choice really do we? The system certainly doesn't help. France is one of the best places to be "disabled" but currently i have some minor problems:

My bloody doctor charged me 40 euros to fill in my benefit renewal forms then sent them to the wrong place. The amount of money i have spent on phone calls, stress of trying to sort it out (in French!) etc...oh, i don't need to tell you all, you know. You know what effect it has physically too.

So: My benefits stopped. Yup it just stops. Eventually i get a letter saying "whoop de doop, you are entitled to benefits; you are 79% handicapped for two years"....er, but yes, in the meantime, until all this is rubber stamped:

Electric will probably get cut off

And water

And phone

And internet

And now i owe months of rent subsidy backlog

I am existing day to day due to an internet friend, plus food stamps. When you can't actually physically walk to the El Cheapo supermarket, it's obvious what you do. You simply stop eating, it's really quite easy after a few days; drinking is much easier & sends you to sleep, which is much cheaper. And is useful painkiller.

What evil little people we are.

zdt

I really don't want to take the risk of children. It could mean, for me, an entire right hip replacement at the end of it, as my right hip is very weak indeed. I have something called osteomalachia which is the precursor to osteoperosis. This has made my spine (already a tricky area for me) and my right hip (especially my right hip) very unstable. I might already be facing a hip replacement in the next five to ten years as it is. My endoncrhine system has been affected, for me this means my kidneys, my right one in particular (why is it always the right hand side- it's feeling picked on!). I may loose the right kidney if it goes septic again. I'm already in enough pain keeping me upright at about 8 stone. Without adding the weight of pregnancy on top. With the hypermobility I am at the top end of the scale in terms of joint flexibility although I am 'benign'- apart from my spine of course. I have also had a very scary period where for practically two weeks I couldn't walk because of these conditions. This condition runs in my family, and every specialist that I have seen so far (and there have been a fair old number of them over the last six years) all seem to share the same concensus. I have decided for a number of reasons not to have children.
Well done you for having kids. Are you hypermobile and fibromyalgic? Did you know that a high percentage of fibromyalgia suffers are also dyslexic?! I am dyslexic too, and it sounds like the 'same kind' as yours (been to your personal space). Curious, isn't it? What do you do for the pain? Apart from an impersonation of Fred Flinstone running out of the front door to the middle of nowhere and yelling.

Intersting - I didn't realise that fibromyalgics also had a propensity to dyslexia. There's possibly some connection to the left hand side of the brain (one side's the "thinking" bit, and one sides the artistic bit, isn't it?) which might have some connection to that.

Like you, my right side is also more a a problem than the left side.

What do I do for pain relief?

H'mm

Well, I *could be flippant and say "mind over matter" and come out with the old joke about the pain not minding it's hurting me, so I'm not going to let it matter to me, but that one's been done to death, so I won't bother

My pain "relief" as such, isn't great, but it's better than a poke in the eye with a pointed stick, I suppose.

Techinically, my local hospital calls me in for day surgury once every 4 months (which in practice - due to cutbacks and internal politics- works out to about every 6 months) for steroid and local anesthtic injections into the thoracic, cervical and lumber joints that are particually degenerative, and between times, am prescribed slo-release morphine tablets on a daily basis.

I've been on those now for about 6 months, and I'm finding they've slowed down the mind a lot - but then, being in pain 24/7 ALSO tends the mind to shut down a bit, so either way, it's complicated.

I've been given sleeping tablets to help knock me out at nights, but they're not very helpful, and when I wake during the night I have liquid mrphine to knock me out.

So poor sleep (which is part of Fibromyalgia, I believe) is a big issue.

Generally speaking I do as much for myself as I can - I use the local swimming pool as often as I can



which does help me a little.

I'm attempting yoga to keep supple (OK - get supple. Supple I certainly am not) and am a firm believer in *working at remaining cheerful and positive as much as I can. I may be flippant about the mind over matter issue, but I do believe a healthy mind is probably the best form of pain relief for an unhealthy body.

Once I stopped raging and railing against all the "unfair" stuff that's happened to me -and frankly, quite a LOT of unfair stuff has occured in my life - - I suppose I'm talking about acceptance here, of stuff I cannot change - then I found the muscles began to unknot a little

Naturally, as soon as there's any form of outside stress, the muscles tighten up again - almost as a "protection" reflex. I've never minded "going with the flow" as such, but I never want to be swept up in the current.

(well.... only for *certain things)

I find not analysing stuff, but simply dealing with facts reduces my stress levels. I used to "Naval Gaze" a lot - now I am pretty housebound, I find too much introspection merely depresses me, so I've made a huge point of "Looking Out" rather than looking in.

"Looking In" has it's place, don't get me wrong. But I think of it as part of the process, not the whole thing. My ailment is only *part of my life, and I try - and sometimes sucseed, and sometimes I fail miserably - to retain a sense of proprtion.

And I use all sorts of alternitive therapies - different practices for different times, when I can afford it.

Lots of stuff, really, but it all boils down (apart from the prescribed drugs, which frankly scare the out of me) to not taking life too seriously. Just seriously enough to cope as best I can with my bit.

Yep; what you can't change, just accept is the only way really.

It's my left side that's more screwed up; i don't have dyslexia with letters, but severe dyslexia with numbers.... i wonder if there's a connection?

I just try & think "Well, what the hell, we all have to get something; unless we die young; and this could be worse; i don't (as far as i know) have cancer & the heart stuff is being monitored; i can still walk (carefully!)It's down to 'count your blessings'"

With this sort of stuff it seems there is bog all anybody can do to reverse it, we all know it's just going to get worse. But harder to cope with for me is that some days i am giving a great impersonation of "normal" but others i am very hard pushed to manage to get out of bed. People really really don't understand that. They don't understand the bravery if you do it too well."ohh i never think of you as handicapped!"

Usually the bad days come 24 to 48 hours after any sort of stress, whether emotional or physical; if you can predict the nasties, you can take extra meds to help...but you can't always predict.

The worst aspect for me is being totally alone; no family, no partner & living in a country i wasn't born in, who squeak a different language with no pension, no savings. It is scary

zdt

Wow.

I come back to work and here after all my time off to find the thread still in use and a lot more people contributing - which is great!

My story continues - 6 weeks ago I had the infected hip taken out and replaced with something called a "Spacer". I am still being blitzed three times daily with high strength antibiotics via a hickman line in my chest, but the good news is that after 4 and a bit months, the wound has FINALLY stopped spewing out the infected puss. If it all goes well and the infection does go away, then they will take me back in to put a proper hip back in - which will be my fifth operation in 9 months.

All in all, a pretty bad year but reading through some of the past posts here it is nothing compared with some of you!

Keep the faith

I think the thing is, with most of this stuff, we really do have good days/weeks/months/years....and the opposite.

I'm having a baddie today. I have asthma also, but it isn't covered any more by free medical thing;(It's not counted as a long term illness, nor life threatening; which is the most ridiculous thing i ever heard!) so i've been doing without Ventolin.

Had a real baddie last night; coughing up blood still today; which is very scary, you wonder if suddenly there will be a major haemmorhage.How can you call for help when you are choking on blood? It's easing off a bit now. Ludicrously, because i can't have Ventolin; i smoke a cigarette to bring the gunk up. Now, is that logical or what?

If you are on High dose antibiotics, do try & eat as much "live" yogurt as you can manage, add anything you like to flavour it, but the probiotic thing does seem to work. If your doctor or pharmacist is switched on, they can give you sachets of high strength lactobacillus powder, it's tasteless, just sprinkle it into normal food. it should stop tummy upsets, thrush etc.

Good luck with the new hip! See you down the disco" uh oh uh oh, Stayin Alive"

zdt

-waves- Hiya Doc - was wondering where you'd got to

5 ops in 9 months, eh? Ya b*gger, you beat me by 2 so far!

Id like to take this brief opportunity to present you with this goldplated as a token of my congratulations for having the... most interesting time medically so far, this thread.

Good to see you're back, and hopefully at last on the up. What with one thing and another, you've had a hell of a time this last year - I don't envy you one bit.

Oh yes, and in the words of the other disco song Hang on in there baby

Golly. My fybromyalgia compared to your is just a drop in the ocean. You sound far worse than I. Poor you. I haven't had to have surgery because of the fibromyalgia YET. But because my fibromyalgia amd the way it's affected my endochrine system means I could be saying goodbye to one of my kidneys (the right one) at some time in the future. I've only ever been housebound for two weeks, that enough thank you very much. I've had this condition all my life but it's only recently been recognised for what it is. Sometimes I just get so fed up but then I think to myself 'I'm lucky, really, there's people far worse off than I'.

Terri & Yoda:

Hi there. You've got me intruiged do you mind me asking 'how old are you?'

I understand the not being able to get out of bed some mornings, it's a real struggle. I am only 32 but sometimes that feels like 82. One day I can be really quite okay, not much pain, I go to bed, have my ususal disturbed sleep, wake up and feel fine. Then - blamo! Within minute I feel like last week's dinner gone cold and fluffy. I sympathise with you not having anybody of your own with you. It's horrible dealing with it on your own, nobody understanding what you're going through or feeling. I have found even with my husband it is a lonely isolating condition. Nobody can truly understand the fluctuating pain levels and the general cpy feeling one has. Go to my personal space any time and chat. We all need someone to be there for us sometime. You can let off steam any time.

Careful there asking a lady her age

*s Terri*

I have a new and IMPROVED answer!

How do you personally deal with crippling illness?

I ignore it and hope it gets bored and goes away