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

Pain. The level of pain is too high. It's gone on too long. I'm off work today. Can't sit because of a trapped nerve screaming in the back. Can't stand because of an angry swollen tendon on the sole of the foot. Almost every other part of me hurts. It's bad. The pain's bad but the thoughts that go with it are hard.

I feel so sorry for those people who are unable to work and have to claim a disability allowance that they must, some how, convince the authorities they're entitled to because they really can't function properly. My doctor has frequently tried to tip me into this disability bin, but I won't be tipped. It looks to me like an invitation to poverty and being viewed as a useless parasite. Worse than that really, because the system must seem inviting and open to actual parasites. People who are genuinely disabled are viewed with suspicion. My pain is not visible. I feel it, but nobody else does. The idea of having to try to prove it to some suspicious and unsympathetic official is just horrible. How demeaning - and embarrassing to have people wonder if you're "swinging the lead".

If I were an employee, I guess they would've sacked me by now. There's no doubt about it: I'm very unreliable. If I were looking for a job, I can't imagine anyone would want to employ me. What a frightening experience it must be for disabled people to be at the mercy of cold, unsympathetic government assessors. It must seem like a new dark ages to them. Fortunately for me, I'm self-employed. But I do wonder how long I can carry on like this.

I've got say I know the feeling on all scores, with some variations.

I hope the back pain and tendon pain soon diminishes.

Thankfully nothing worse on my end that a raging headache and a legal appointment I've got to leave for in about ten minutes.

Wishing you the best.

Thanks ITIWBS

There's a lot of it about. And there's a lot of understanding at h2g2

Hope your legal appointment goes all right. If luck's needed, here's from me.

I am in a lot of pain today with my legs. I have Spino-cerebellar Ataxia (SCA) which is very similar to Multiple Sclerosis, except no medication that helps MS will help Ataxia. There are different types of SCA, mine is an unidentified type which means there is absolutely nothing they can do except pain-killers.

I also suffer from other varying health problems, and eventually had to leave my job which I trained up to supervisory level which took 10 years. I have been left work for three years now, I basically worked until I dropped and my specialist told me if I didn't give the job up, my condition would accelerate quickly .

On the subject of benefits, it took me a year to get anything, they kept losing forms and then the constant medical reports and reviews were endless. I have to go through the whole thing again next January as my review is due . The forms took me a week to fill in last time!

I was fit and well until I caught chicken pox a few years back, which killed part of the brain which controls the main nervous system and caused SCA. It was a shock and very hard to deal with at the time.

The constant pain is unbearable sometimes, the painkillers help but are not a cure.

All the best.

Nigel

Sorry to hear that Nigel. It sounds hellish. And it sound familiar. It's hard to imagine why the system set up as a safety-net, to catch you when the worst happens to you, should actually be carefully contrived to ensure that your suffering is amplified from the moment you try to access it. The idea of being at the mercy of such a system fills me with dread. Working until you drop seems the only realistic option - as it always was before the government kindly put the system in place.

For the past few years I've only visited the doctor when they give me a note demanding that I make an appointment before they'll renew my pain-killers prescription. There's nothing at all they can do except prescribe pain-killers. All the rest is flimflam and snake-oil as far as I can see.

Hope you manage to keep your chin up

Hi, TB,

it seems to me that the system allows shirkers and fraudsters to milk it, but leaves genuine cases feeling guilty and fighting for their rights. You are right to resist it as long as possible, but if Nigel had given in sooner, and not held his 'work ethic' to be so important he might well have been a lot better than he is now, so think hard about soldiering on. Sometimes it is a mistake, as more long term damage is done. I have known him for a long time and I honestly don't know how he manages to remain cheerful so much of the time.

Of course being self employed complicates matters doesn't it?

Websailor

Hi Websailor

It's a shame what's happened to that system. Part of the problem was that the government (Conservatives at the time I think) encouraged this kind of fiddling in order to get people off the embarrassingly huge unemployment register. When the government's at the root of the corruption of a system, what hope? And the ultimate result is that the people it was set up to help hardly dare think about using it. It's pretty ironic that the people with enough strength and energy to battle the system in order to get an allowance, are likely to be those fittest to do a job and actually earn a living.

It reminds me of those "trial by ordeal" things they had in the middle ages. They'd sling some poor old woman into a river and if she drowned she was deemed innocent of being a witch and if she could float or swim then they'd execute her for witch craft. In the modern version, set up for people who are suffering from some disabling condition, if you're not fit and energetic enough to fight the endless battle required by the system, then you can't be disabled/ill enough to need it. Call me sceptical, but I think it's all designed with the specific purpose of keeping the eligible from claiming.

As for soldiering on, I wonder whether the hardship is very much more than that involved in getting blood from a stone (or money from the state). And then there are the questions of dignity, privacy and the balance of your mind, that are all threatened once the state starts poking its fingers into your life.

Nigel has all my sympathy. I really do feel for him. Disabling conditions can happen to anyone and they don't necessarily give you fair warning that they're coming. When it does happen, you may not be in a position to carry on until you drop. Every individual has to decide for themselves how much they can tolerate and of what. On balance, I reckon I'll tolerate the pain at it's present level better than I'll tolerate the strangling red tape, inefficiency and patronising interference of the state machine.

Good MorningEach Can I add my six pennorth,please? I was roughly where you are now, TB about5/6? years ago; in pain, but self employed. I soldiered onuntil finally my lower back went completely on strike and I couldn't move for several months; it was terrifying. And thus began a series of operations on my back - culminating in a dennervation, which really put the mockers on recovery. And it took me three solid years of fight, and 3 rejections before I took a very deep breath and got in touch with my MP, explained the situation and asked for help; any help'll do I said, I'm at the end of my tether here. Long story short, he actually stood with me in front of the tribunual - and, as a result, I was awarded DLA "indefinately", which in itself is rather like being given the Holy Grail. Usually, DLA is awarded in 3 or 5 yearly chunks. And each review can take up to a year(when it's not awarded) whilst they go thru your medical notes again and query Consultant's findings, etc etc I agree; the questions asked*are an assault on the soul,almost, dignity is stripped bare and always, there is this feeling of "They think I'm faking it" You start to feel guilty for having the occasional Good Day. Although you mustn't describe them as "Good Days" you have to describe them as "Better Days" In order to fulfil the criteria you have to become a "career" patient, it seems to me. Go to the GP weekly in tears, get palmed off with antidepressants, and after 6 months of continual hassling and time wasting, they finally start sending you to various Consultants... it's a nightmare.... I was lucky; I *knew I wasn't fit to work, and*knew I needed help and if I think I'm in the right, then I'll stick at nothing to achieve my rights. In short, I'm determined. But after 3 years I was on my knees; so god help those who are equally poorly but less emotionally robust than I. I honestly don't know how I coped, and in truth, had the MP not helped out at the last hour,I would probably have topped myself. The thing was, the physical pain I was in was even worse than the going thru the system. In retrospect, I wish I'd put the wheels into motion much earlier than I did As the MP remarked to the tribunual "It shouldn't have to get to this stage before those who obviously need this award are even considered" http://www.bbc.co.uk/dna/h2g2/alabaster/F122927?thread=3716838 Blimey! You get a lot for six pence nowadays,don't you

Hello Evadne Cake ,

It is nice to see you, I have missed not seeing you around hoo-too much . I must check to see if you are on my friends list, so I don't miss any of your conversations .

I am hoping next January does not mean loads and loads of form filling in etc... but I have a feeling it might. The questions tend to repeat themselves which can be rather annoying, but after they kept losing my forms last time I photocopied them before sending them off. There are organisations that help you fill in these forms as most people struggle to answer some of the questions. I was told to fill them in like you are having a bad day, and explain each of your conditions carefully as the people entering the information into the computers haven't any medical training.

It is very difficult first time, if you don't know how the system works. I spent over 3 hours trying to get through to the main place to ask for advice and get the available forms etc... They finally answered the phone to inform me they are just closing and phone up tomorrow! It was very frustrating.

The good bit of advice I can give is to make sure all forms are photocopied before sending them off, and go to see your local citizens advice officer who has a lot of information, ideal if you don't know what to do first .

All the best.

Nigel

Well said Ev. A friend of mine some years ago said the system is set up to penalise anyone who is trying to do their best in difficult circumstances, which on the whole most people with a conscience will do. They just do not accept that the occasional 'good day' is nothing compared with all the others when work would be impossible.

They are now talking about looking at what people 'can' do, rather than what they can't, but where do they propose to find employers who are prepared to take on people who might be semi-fit for work two days in seven? No business could run like that! They also forget that a long time out of work means huge psychological problems in facing a workplace again which can be crippling.

Oh, and I agree TB that the State poking around in your life, not to mention nosy neighbours who like to comment, is a nightmare best avoided as long as possible. I thank goodness that when PHM was ill, he could take early retirement and we could manage without State handouts.

Websailor

That is what I said to my doctor, Websailer.......an employer doesn't want 'well I might be in two days a week, I might not, it depends on how well I am!'. They want a good attendance rate which is understandable.

Nigel .

Morning each!

Good to talk to you Nigel - I wanted to ask you a question about how old you were when you got chicken pox- I had em twice; once as a child,and another attack when I was around 33ish. I was covered in pockmarks the 2nd time aroundEven had them in my ears and throat!

Boy, that was fun!

Put me on your Friends list by all means - may I do the same with you, please?

You're spot on with the Nosey Neighbours scenario,too Webbie. One sort of lurches around with a little cloud of low grade paranoia floating above ones head....I look too happy to be in pain sort of thing. The fact that I *work* on being cheerful is misconstrued as faking... which is very frustrating.

As for what people "can" do...!

On Better days I could probably run the country (lets face it,you don't seem to have to be particuarlly bright to do so) but even something as slack as this government wouldn't take very kindly to employing me 2 days out of 7!

I mean, I may have a Naff day when it came to something vital like ensuring my colleagues got another Pay Rise, or something... that'd never do

I heard, via a couple of my Civil Servant friends that one local Council Office employs a Blind Postman and a severely deaf telephonist(and their Carers) as their nod to employing the disabled.

There's something wrong with that picture somehow......

Hi Evadne Cake,

Of course you can put me on your friends list . Thanks.

I caught chicken pox at 23, I am 27 now. I never had it before, and had the horrid spots everywhere, and I mean everywhere .

My sister has never had it, nor dad. It just came on so quickly with me, the pains in my head was incredible....of course, they couldn't do much except painkillers, lotion and antihistamines .

It was very painful and was off work for a few weeks suffering . All my other problems started shortly afterwards.

Nigel

H'mmm.

Interesting, that, Nigel

All - or most, anyway - of *my problems started after a 5 week bout of adult chicken pox, too. And oh boy it itched and hurt like devilment!
(I had the spots everywhere, as well)

I still get absolutely exhausted doing relatively little, even now. And it's not thru lack of trying to build up my stamina either.

I got the terrible pain in my head and my ears and eyes though, as a child. I can remember lying there, grizzling quietly, and shuddering as the tears trickled into my ears.

By the way, Nigel,call me Ev -most people do

Ev.



Nigel

A point to little known even yet, chicken pox is completely controllable with zoovirax, though it may take elevated dosages. Having had three serious outbreaks, two in childhood, during which one of my cousins died of it, one as an adult, a classic nine month bout of shingles, I personally know its a lot more serious than most people think.

Contemporary horrors: in lieu of vaccination, some parents have chicken pox parties in which the kids are exposed to the disease on the mistaken presumption that a childhood exposure confers lifelong immunity. Actually, it assures adult shingles, which is drastically worse than the childhood form.

Also, vaccination does not assure permanent immunity, but is a drastically better bargain than the disease.

There are certainly lots of myths about chickenpox. My Dad had shingles and I got chickenpox and so did my kids all at the same time. Dad had just spent three weeks in hospital and we think he brought it home. We only had it mildly though it floored me for a few weeks.

Websailor

>>>My doctor has frequently tried to tip me into this disability bin, but....<<<<

TB,if your *GP* suggests DLA then go for it - grab the opportunity in both hands and take the plunge!

Seriously, if your GP has frequently tried to.. tip you, then you have a wonderful ally; go to them, explain what puts you off going for it (and yes, horror of The Forms is a damned good reasen NOT to want to do it) - this will be put down on your records(probably) as depression, which in itself is one of the things the DLA seem to like to hear about.

Matter a damn if you are taking Happy Pills for it or not, it has to be noted "Officially" that you are feeling low. (I refused to take them)

Ufortunately, you need to be able to Play The Game By Their Rules

This in itself is a bit of a Bugger; what it *more important, is that you mustn't allow yourself to take the daft questions personally or to heart.

(That's where an occaisional heartfelt Rant onH2 comes in handy. I know for a*fact when you say you're in pain you're *really* in pain, and I don't actually know you...if you see what I mean)

If your GP fills in the DLA's questionnaire about you correctly, then you won't have to go through *Half* the palava most of us went through, because you have a supportive GP.

Supportive GPs are rarer than hen's teeth!

Hell, s/he might even be able to get the Practice Manager to fill it in *for you! Or refer you to some voluntary organisation.

And please, *don't feel with DLA you're on the scrap heap. You're not.

I was self employed before I had to give up, too. And OK, I can't physically do the job I loved.

But I've developed a hobby into what hopefully will be a little cottage industry soon, depending on how much my first customer tells her friends how wonderful I am

(Keep your fingers crossed, please)

There is life after DLA, honest.

And lets face it, although it's not a huge amount per month, *anything* that reduces "Stress" in anyone's life will, in the long run, assist in keeping the pain you suffer under some sort of control of your own. Spending a few bob a month on a nice massage, for example, will probably, in the long run,relieve stress, which in turn will make you productive in your working life for longer.

Which in turn does*not* have to make you feel guilty for having an occaisional wedge of Better Days

I know a few folk who are on DLA, and without exception, we *all* feel, from time to time, we're frauds - especially when we *do have a spate of Good Days. That's because we all have a conscience, and are generally proud as Lucifer. Pride was my downfall- I work hard at playing thngs down, to my own detriment.

But believe you me, it's *always the ones who managed to scrape by on a technicality that have the Window Cleaning Round and a couple of decent holidays a year and a frequent social life

They *don't have a social conscience - and that, IMO is the true difference between being Disabled and being a Cripple.

Think about it anyway.

I'll...er... I'll just clamber down from this soap box shall I?

the agonies most truly disabled are put through are cruel, and you are spot on in your assessment Ev.

Oh, and I agree, a supportive GP is worth his/her weight in gold, and they should know who is swinging the lead if they are ding their job properly. Of course the ones doing that are also more than capable of bullying to get their way.

Websailor

When I had my 1988 shingles flare, I had been exposed to one of my nephews, who'd contracted the chicken pox in a school outbreak about four weeks prior to my onset.

The region affected, though, a patchy area with about a square foot of area total on my lower right torso, was exactly the same area where I'd broken out in 1/4 inch thimble shape pustules during the 1955 outbreak, in which one of my cousins died.

People with shingles certainly are contagious, which is among the reasons I regularly pressure the Doctors on the prospect of booster immunizations. I'm told this is still controversial.