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

One very weird thing is that respite care is not available for the ill/disabled person. Apparently if you are looking after yourself you can't be that ill/disabled and so don't need respite

I get "Cotorep" which is basically Disability Allowance. But i am battling like hell to get some sort of Home help; have now eventually been told i do qualify for it *but* have to pay towards it.

As far as shopping is concerned it's just tough s**t, abuse a friend with a car!

But France is actually one of the better places to be if you have health problems, in fact a recent survey rates its health system as the best in the world.

So gawd help the rest of the world, 'cos the State sure as hell isn't going to!

zdt

< Apparently if you are looking after yourself you can't be that ill/disabled and so don't need respite>>

Oh, there's a Catch 22! That's terrible.

Terri, I am glad to hear that France is one of the better places... I hopeyou do manage to get an (affordable) home help..

My Mum was lucky to get one from the Hospital Board, because my brother was a 'child', well, not really, but 18 wasn't the age of majority back then. Plus, she couldn't look after herself, as her paralysis was spreading.

Yeah, quite kea!!! We fall totally through massive holes in the net! I NEED respite care right NOW, i need to just get looked after for maybe a week or two, then i could recharge my mental batteries, rest my knee, & i would probably be fine for another few months.

I'm not even talking about going into hospital, god, i resist that like anything, just if someone could come here & help out.

There seems to be this massive assumption that "everyone" has "friends and family" to "help out" and it really really isn't true. Some people genuinely ARE alone in the world & that's OK if you are able bodied but hell, get some sort of mobility problem & you are f**ked!

zdt

Some very interesting stuff in this thread and the main message I'm receiving is that if we know someone who has to deal with long term pain/mobility problems, we shouldn't wait until we're asked to help.

Terri - I'm wondering if a gap year student might be able to provide the kind of assistance that would make your life easier? It would give them a chance to improve their French and practice living away from home before they go off to univ. A bit simplistic perhaps - but maybe worth investigating?

In my late twenties I went through a spell of having uncontrolled asthma, partly due to a GP who was useless. At the time I had three small children and was very frustrated at not being able to do what I wanted/needed to do.
I'm very lucky that my condition stablised with the right treatment.
What shocked me at the time was how angry I was that my body had let me down - and I'm wondering how those of you with long term problems cope with this anger.

I had exactly that, gap year student, in fact someone i met on hootoo & it REALLY helped, he was great, went shopping & stuff & was brilliant company but i only have a little house & poor student has to sleep in a very basic attic! The good part is that they can have that attic as messy & full of unknown horrors as they want; no way am i clambering upstairs to nag about the state of their room!

And they pay minimal rent and get to stay in a nice medieval french town with loads of festivals & stuff.

The bad part is attic is bloody freezing in winter so fuel bills are enormous unless i shut it off so if someone is in there they have to pay their share of those bills. And there is very little chance of getting a job round here, evn for a fluent French speaker, so they need funds.

Wish he was still here now! If anyone knows another possible victim, let me know!!

zdt

The whole care system in england is a mess!!
Three years ago i did a lot of campaigning,along with the family and families of others; ,t.v.and radio interviews,lobbying the council etc.,because they decided to close the council run care homes down,(apparently a cost cutting exercise) to give elderly or infirm people more care in the community,thus alowing them to stay in their own homes.My mother was in residential care at the time,so it was a cause very close to our hearts.We fought long and hard,and eventually saved mums home from closure,although when it came down to it,,no new residents were ever addmitted after that,apart from patients needing rehab.The use of other homes was changed,and they were only taking E M I patients,thus leaving a gaping whole in the system for people needing respite care.
Sadly mum died a year ago next week,so i lost touch with the situation fro there on,but i know that the care these people get at home is slip shod to say the least.It's time that all governments gave more thought and time to re-organising the care system,and put in place decent care and respite packages instead of compaining about the cost of health care in hospitals,If there was a decent service to help people who have nobody,but need practical help the cost of running hospitals would be reduced greatly.I find the whole situation appaling,people are crying out for help,and nobody seems to be listening.

I don't think- or at least, not right now, because I am so angry with "the system" I ought to comment - but I have to say I agree with the comments made about lack of respite care, and generally lack of "Care in the Community" P'raps I'll crush a grape about that one another day>

As regards "how do you cope with chronic pain".. h'mm. I've often wondered the same myself!

For me, I've always had aches and pains, even as a kid - if I complained I got told to stop moaning and hurry up, so at a relatively early age, I got used to physical pain; in a strange way, it was "normal" for me. Same as the sight - up until I was 6 or so, I honestly thought *everyone* had a world view thru a gauze smeared with vaseline - it wasn't until I walked into a glass door and knocked myself out that it occured to the parents that maybe, just maybe, I couldn't see too well!

It wasn't until I'd given birth, which apparently is quite a painful thing to do, that I realised I had a "marker" to state from. In my experience, giving birth is a doddle - it's a bit discomfortable around the nethers, but otherwise, what WERE these other women in the labour ward shrieking about? (And I base that comment on a 48 hour dry labour, btw)

So I suppose it's a matter of just getting used to it, accepting it (I'm not saying it's acceptable, but as it can't be changed, it simply has to be accepted) and "working round" the problems. One adapts every day items to lift, to pick things up; clothing is adapted so the waistbands don't dig into the lumber region and press nerves, for example. The problem is, as another contributor pointed out, I've adapted so much, that I cannot now tell where "my" normality starts, and where "yours" does, as such.

In a warped sort of way, it's made me more inventive, and more creative in day to day living. The old saw about Necessity being the mother of invention sometimes does hold true.

And it has certainly helped me stand firmly (metaphorically speaking, anyway) to become very forthright with the Medical Profession and various Government deppartments If I start to feel hopeless and lost, that's when I sometimes am able to spew verbal vitrol at these smug barstewards and occasionally tie them in knots - it doesn't help me physically that I can -just sometimes - make these idiots choke on their hypocracy and stupidity, but when I can score a goal and make them *see* what it's like, and watch their pomposity deflate its better than a handful of painkillers for me!

Well, sometimes it does. And occaisionally I can get some help,as a result of that rant.

But yes, you *do* have to fight like b****ry, and there are days when just getting up is a real, real effort. I con myself it's just a game - and as I play to win, no effing burocrat is going to beat me. They haven't got half my wit, charm, charisma and sheer bloodymindedness!

*I'm* in charge here, it's *my* vote, and *my* contributions to their budget that keep *them* going : Gps and Civil Servants alike chose to help us - and I will not be made to feel inadequate or inferior because I - rather naively - expect them to do a good job rather than a slap dash one. It's me, and people like me that is their reasen for being, surely?

It's the principal of the thing!

And the next time I feel weak and hopeless and helpless and "Oh Gawd what is the point" I shall read back on this...and possibly believe it for the next battle.

clambers off soapbox

*

It occurs to me often that those of us with this attitude are possibly the lucky ones though, we seem to have hides like rhinos & complain LOUDLY & refuse to go away.

But there must be many more disabled people who are by nature shy, timid, uncomplaining, the personality is not necessarily connected to the handicap factor. And we are lucky too in having internet access; what a bloody lifeline!

So for each of us on here, there are probably 10 suffering in lonely silence; it's them we need to fight for 'cos they can't do it for themselves.

*passes soapbox to somebody else*

zdt*having a good day*

It took me 47 years to actually complain "properly"- and loudly, Terri.

I think, like alcoholics, we have to "hit bottom" and THEN start complaining in a way the PTB possibly can undersatnd.

- I began my journey in earnest just this April, after an operation I had went horrendously pearshaped, and I subjected my 2 lads to the uneddifying sight of their mam sat rocking in agony on the settee screaming incoherantly whilst a visiting GP was wondering just how much morphine my body actually needed before I could feel an effect.

We never did find out either. I was still awake the following day - I'd just adapted to the pain.

God help us, humans are very very adaptable.

You see, up until *then* I was fighting for every other underdog but the top bitch - which is me,(in my world) when's all said and done.

Now I use every ounce of my energy to better "my" situation - which does, indirectly better that of my sons, and again, in a diluted fashion, the other 9 poor sods who are too battered down with depression and pain to be able to move in any aspect.

As I said earlier, it's not that I don't care - and care passionately about others; it's simply that personally I need some "me" space, and I've finally come to the conclusion I am well worth fighting for. And no better person to do it for me than myself. Who else would I rely on? I'm the best person for the job, after all.

Once I've got "me" straight - or as straight as I can achieve, then, and only then, will I start looking out for others.

If, in the meantime, by helping myself, I can help clear a path for others, then it's a bonus I'd be pleased to own up to.

I would agree that most of the anger is at the healthcare.
No "Why me?" anger;I think w- Why not me?
Who the am I to be spared this or any other sort of suffering?

I believe pain is pain and loss is death no matter the details.
Plus emotional pain and disorders are neglected , untreated and misunderstood. There is even less help , understanding and *tolerance.

If I'd had kids I would have had to wrestle more with anger and other emotions but hopefully work it out so as to not pass it on. The wonderful parents here have have spoken very endearing words.

Like described above - I tolerated the pain for a long while thinking (hoping)it would go away. The side effects were not always worth it.
I also wanted to be properly diagnosed before masking the pain!

This process has defined the word tolerate for me.
I cannot tolerate the use of the word tolerate when it comes to using it in descriminations. When one group tolerates another it is not usually a postive thing. Often it's a temporary truce , forced and becomes a negative block to progress in areas just like pain.


I cannot tolerate the use of the word tolerate when it comes to using it in descriminations. When one group tolerates another it is not a postive thing , it is usually temporary, forced and becomes a negative in the normal movements just like pain.

The really weird part for many are the feelings of guilt.
They paralize like perfectionism.
The story early in the thread about the nurse showing the patient the children is NOt very nice or helpful thing unless you were a totally intolerant and nasty person at the time.
It is not a contest!
Yes there are always people worse off - I never had to be reminded of that. All the more reason to strive to do your best with what you have and remember to be grateful for what is right Still... if you are suffering it can relieve you to say so, there is nothing wrong with it. Everybody wants credit for efforts , tell at least one person how hard you work at it.

There is less need to talk when you know you have been heard.
Quality is always better than quanity. Many times problems you share end up having you taking care of the listener. Not helpful! Everybody is lucky to have even one friend that can hear it and keep moving along treating you "normally".

Does no good to have guilt.
Guilt of hate, turned inward.
Guilt about depression and anger turned inward.
Neither is helpful for marinating in.
Learning to live with pain is like any learning , a process and like os many new things worthwhile you do not learn in a day.

It's far better to rid yourself of fear,anger and guilt in order to have the energy to fight for your medical and those who "tolerate" you so there is time and energy for the activities and people that give back and accept your gifts. Be grateful for what is right

You never quite get used to severe pain but you do learn to tolerate it. Rarely I have awaken shocked about my reality because in my dreams I was totally active.
Disclaimer-Just my thoughts, not one size fits all.

I'm finding this thread to be a real honest eye opener!

Occasionally I have suffered from severe pain for up to 24 hours, say with flu/stomach upset/period pain/migraine. I have felt pretty suicidal with it at times. To have to suffer it for day after day with no end in sight is beyond my comprehension. People suffering this should receive much more publicity and media exposure in this day and age which hopefully would change society's attitude and make more help available and force more money to be spent on medical reasearch for pain alleviation.

For goodness sakes even if we don't have it now, it can happen to anyone of us.

All I can say is, kick up as much fuss as you can to make the authorities listen. If it happens to me I'm gonna scream until something happens. And they can bloody lock me up if they don't like it! Sorry if some of you think I'm being naive, but from reading posts here you've made me feel very angry about the lack of support in our society. It should be enshrined in law for proper decent reliable professional help to be given. Not making people have to beg here there and everywhere and feel guilty!

Abbi, i seem to remember that the way we actually got together on hootoo was when i mentioned the "why NOT me?" thing!!

Yes, it CAN happen to anyone, accident, genetic condition, illness, whatever. Nobody deliberately gets these things though of course some can be a side effect of "abusing ones body" with alcohol,(see George Best) cigarettes, overeating, unwise sex, riding horses (See Christoper Reeves) motorbikes; crossing the road (see Heather Mc Cartney), getting struck by lighting (see abbi!)stepping on a landmine (see a kid in Cambodia)

Life is a risky business. But if someone ends up less able to deal with daily life, in a just society, this should IMHO be taken into account & provision made for it.

Most folks with handicaps want, like everyone else, to be independent. They don't want pity but they DO very very often, need practical help. So often even the well meaning folk don't stop to ask "Hey what can i do to help? What's useful?" they just do what THEY think is needed, often it isn't that, but some other thing that would really make a difference. And we have to be grateful 'cos at least they helped out at all.

If a guardian arrived here right now, the things i need are:

take for really good
find out what the hell is in that bottom cupboard..i suspect some of it is mutating by now!
go up to the attic & see if you can find the large black plantpot i know is lurking in there somewhere...and also the duct tape
If you find duct tape, stick down the trailing cables on the floor so i don't trip over them
Shift the cooker so i can clean under it
Move the control for light switch 5inches higher
help me hang the washing out
connect the printer!!!

and please, please, please take me shopping! Take ME; not offer to do it, maybe i would like to choose my own stuff like everyone else does!

zdt*still on good day so far*

Am I right in saying that less and less people are going into social services or whatever as professional carers? Obviously, that's terrible, and it's clear that they are really needed, but I can also understand their point of view.

They are generally poorly paid which says it all!

It seems to me that a lot of people who do the most valuable jobs are poorly paid - nurses, junior doctors, teachers, carers.

IMHO less people are going into social services as carers because the PTB are closing so many homes down.If that had come about in the case i mentioned earlier then the staff would have lost their pensions,and the local authority would have saved themselves a lot of money.
The staff where mum was were dedicated to the residents,and mum always knew them ,even when she didn't recognise her family as who they were,and not just a friendly face.
The younger staff were poorly paid,although equally dedicated in most cases.

WhAT get's to me is the way the goverment in the uk say it is down to money well when you see how much they waste eash year on silly thing's they could put a heck of a lot more into our health board .

I think, in the end, it all comes down to money. Our own - and the governments (which is, one and the same thing, in the final analysis.

- if money isn't spent, or extra money isn't invested into a health AND a social system that works efficiently (and one that's based on common sense, rather than trying to fit people' into "boxes") it isn't too much of a deal really, far as any government is concerned, but it IS jolly useful;

If the sickies are really sick, then they'll die - thus saving the government a fortune in handouts. And of course, if there are less people "sick" then there isn't the *need* to pump more money into the health/social system because there isn't much demand any more

A lot of the time, yes, it does feel a case of "ignore us and we'll go away"

Er..Excuse me? I'm still here. I'm not going anywhere.

Its the "where to start" though, isn't it?

Education? Preventative medicine and research? Extra funds for more research for already established chronic illnesses? Politicians doing what they say they'd do on the tin?

Honestly, come the revolution....!

If the sickies are really sick, then they'll die - thus saving the government a fortune in handouts. And of course, if there are less people "sick" then there isn't the *need* to pump more money into the health/social system because there isn't much demand any more>>>

what you mean is save money for there back pocket's the ill get riped of enough .grrrr