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

Oh! And Mr A - I've been wondering how that phrase ought to be spelt for years.

When I get a new stick I can paint that down the front, just to ring the changes, AND know its been spelt right

Have a

Awww

Terri wrote: The internet is great for this, so long as the person is physically able to type & stuff, it's a window to the world.

And I'm not even typing. I can type, but it takes too long. I tend to want to give simple cryptic answers, rather than expand on anything. But now, I use a dictation program that recognizes the words I use and types them on the page. I dictated just about every word of this message through Dragon "Naturally Speaking" product. A company called ScanSoft makes it.

Even the help desk people at my Internet service provider use this product rather than type all day.

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A classmate and friend of mine in 2000, used 'Dragon Dictate', which I gather was pretty primitive. She told me that when a truck went past her house, a row of ???????????????? went across her screen!

Obviously it's improved between Dictate and your product, Tigger, which is really good.

(My typing isn't so good right now, but that's just because it's freezing here this morning. )

What a remarkable bit of technology Tigger- I'm a technoduffer, and didn't realise anything like that existed.

I've been meaning to address something to you, but like most threads, by the time I got round to saying I could see your point about "not fearing the wheelchair", there were too many postings between - if you see what I mean.

I've used a wheelchair, especially after my op; I hired one out from the local Mobility organization, and yes, it did give me a strong sense of freedom.

It was a pure joy to get out after being totally housebound for a month (I was going stir crazy), and yes, getting out, socializing, being and doing stuff with people is a good way of coping. I still catch myself thinking "Naw.. I won't go out today, it's too painful to enjoy things" on occasions, and if I droop about too much I give myself a Good Talking To

Problem I have is that I live in a 3 story maisonette (I've had grab rails fitted along most of the walls and I@m still limber enough to chug up and downstairs, albeit a bit less sprightly than I could do!) with a very long narrow hall, so for the time being at least, a wheelchair isn't an option I can consider.

Once I'm rehoused, then I'll re look at the situation. I keep hoping that one day "they'll" come up with some wonder cure I can stomach.

What I wanted to ask you is this: when I was bed bound and unable to move much atall, the thing I baulked hard against was that I HAD to allow people - my friends, and my sons,to ..well...do stuff for me.

Support me to the bathroom, help wash and bathe me, help dress me, and so forth. I didn't mind too much about not being able to do housework or cook meals, but even then, I did get frustrated that "their" housekeeping wasn't as perhaps thorough as mine, or their cooking/food habits weren't exactly what *I* would choose.

I found that the hardest thing in the world to cope with. The pain was rotten, but then, pain just *is*; it was the feeling that I *had* to surrender my independence that hurt me far more.

How have you coped with that aspect of your disability?

I haven't read the whole backlog, so I can't comment on what's gone before. Here's my 'take' on the situation.

I have relapsing-remitting MS and my first 'attack' was about 5 years ago. For 3 years I thought, "This is no problem, I can live with this" - the attacks were fairly mild. Then last year the attacks started to get more frequent and more severe. I gave up driving and started to use a walking stick all the time. There were occasions when I *had to* use a wheelchair, pushed by hubby because I didn't have enough strength in my arms. I had a bad attack that started in July and went on until March this year. I seriously thought it would never end.

Then, in May this year, life threw another spanner in the works. My hips / pelvic area became painful. At first it was just my left hip, now it's both. Sometimes the pain's so bad I could cry, and it's always there, even if it's just a dull ache. Over-the-counter painkillers don't always help, but I'm reluctant to ask my GP to prescribe something because of the cost. I can't stand or walk around for very long. Trips to the supermarket end with me sitting down while hubby packs the shopping.

How do I cope? By knowing my limitations and keeping within them. It sounds simple, but it's hard. I used to walk 6 - 8 miles a day, now I have trouble with 600 yards. I can't do housework because I tire too easily. I can live with that, but I've also had to give up line dancing, which I loved. Our shopping centre has Shopmobility, which allows me free use of a 'scooter' to get round the centre. I wouldn't be able to shop there without it.

I know that one day I may end up stuck in a wheelchair and the thought scares me. This isn't because of any stigma, or because of limitations it may place on my activities. It's because our house isn't suitable for wheelchair use, we can't afford alterations and it takes forever to get a grant out of Social Services to cover some of the costs.

Hi there cheerful dragon,have you had a word with your Occupational Therapist,there will be lots of aids you can already be using,and i think ,in a lot of cases, it depends on the help you get as to how quickly you can have things sorted out.
I cant take myself anywhere in the wheelchair,because of my neck problems i lose the strength in my arms very quickly,but yu can apply for an electric wheelchair,which is controlled by one hand.
As for the pain killers,have you applied for free prescriptions,or for a pre-payment certificate?If yyou have a low income you can get free prescriptions,or in some cases help towards them.
I get a pre-payment one,which costs me apprpx.£34 anf lasts for four months,,,,i have eight things every month,and more if i have extra visits to the docs,and at almost £7 an item it works out very expensive,but once i've paid the £34 i just show my little card,and sign the back of the scrip.
I hope that you have applied for DLA too,it's there to help people like yourself,who might need extra for taxi's etc.
Try not to worry about the wheelchair thing,the therapist will be the one(i think) who can arrange to have adjustments made to doors etc(widened),to allow room for the wheelchair,and those sort of things would be paid for,It might be worth getting any available informatin now,so you know in advance what can be done for you.
We have very little space too,my wheelchair stays in the car most ofthe time,unless i'm having a bad day,in which case i can only use it in the lounge,and i have a scooter which stays outside,locked up and alarmed,but i can't go out alone,so someone gets it out for me if i need it!!!

Hmm; seems like UK is more clued up than France about the practical mobility stuff, disability benefits are higher here, but there seems very little in the way of providing access, certainly no scooters around. I have seen a few folks in wheelchairs, but always being pushed by someone & my main problem is i just don't have a "someone" other than viking, who is pretty unreliable, too busy dealing with his own depression issues (which, to be honest, are beginning to depress me too, he refuses to be helped. The last thing on earth i need is to get depressed!)

I get free medication for my heart condition & asthma & a limited amount of soluble paracetomol, which i only take if i have more pain than usual, or in advance if i know i am going to have to do something requiring lots of effort.

Don't have any sort of Occupational Therapist & when i asked at the medical asessment for disability "What is available in the way of practical things?" they just laughed & said "friends & family!"

They have now given me a pair of snazzy purple crutches, i reckon this is the full extent of the mobility help i am likely to get. I am terrified to use them though, this is a medieval town with cobbled uneven narrow pavements & loads of up & down bits. If you have a wheelchair (or are with kid in a pushchair) you have to go in the road, chances are if you were only a bit disabled when you ventured out, you will return much more so!!!

I have noticed a few more ramps up to shops, which is a good sign. Access to the Social Services is via 9 uneven steps; no alternative!!! All you can do is, how can you get in there to ask for help? French logic at its finest!

zdt

Hi terri,i think there are lots of new regulations in force for disabled ,in all the eu countries.shops have to provide disabled access now,although i think lots of small businesses are finding it hard due to the cost.
I understand exactly what you're saying about the cobbles..the year before last hubby and i went to york for day out,it was impossible !!!Warning..if you have dentures,don't try cobbles
We have talked about goingto different places for holidays ,but spain,france,are all out of the question.Hubby has to push me wherever we go,and he had a heart attack seven years ago,and can't do the steep bits,so we have to go somewhere flat..hence florida,where they really cater for disabled people.As i love looking round the shops,it's also impossible to get the wheelchair into most of them,the doors aren't wide enough,and the aisles just wont' take a wheelchair.
I only use the scooter for round the garden ,but at least i can still do my pots and tubs in summer,which i thoroughly enjoy,but it's too heavy to get in the car.
The crutches sound trendy..maybe you could use them to get your point across to the appropriate people that you need help!!!

Going back to the supportive partners comments, there is an older couple who regularly pass my house. The woman is in a wheelchair and the man pushes her. They are probably mid to late 60s if not older.
Everyday he pushes her into town and back. BUT he spends the entire time berating her, her decisions and making a martyr of himself for doing it day in day out. Seems so sad to me.

And the (false)latin quote has a number of permutations. Illegitimus is not really correct latin for b*stard and carborundum is not latin at all.

Spain! Oh, don't get me started. Here in the UK, it's not uncommon to find dropped kerbs at street corners (in our area, anyway). And when I say 'dropped', I mean it - all the way down with a nice gentle slope. We went on a cruise last month and stopped at Cadiz and Barcelona. They have dropped kerbs, but the drop doesn't go all the way down, so you still have to bump the wheelchair down and hitch it back up on the other side.

Occupational Therapist? What's one of those? I asked my GP to refer me to a Physiotherapist and was told there's a 7 week wait. That was 5 months ago and I still haven't heard anything.

I've applied for DLA and I'm still waiting for a decision. I'm also applying for Incapacity Benefit, but that doesn't get me free prescriptions. It's crazy - you get free prescriptions if you're on Income Support but have no ongoing condition, but not if your condition means you can't go out to work! Also, I may not qualify for free prescriptions because hubby earns too much. I don't know who works out what 'too much' is, but they want to be taught the harsh realities of life on a single salary. We don't even qualify for Council Tax relief. If I had to go on prescription pain-killers, a pre-payment certificate would be one approach - if we could afford it. Many people have complained that the cost is too much to pay in one big lump. Even the short-term certificates are expensive if you're on low income. I'll have to look into the Low Income Scheme, which may get me free or reduced-cost prescriptions.

Oh, and if you want a real Latin version of "Don't let the b@$t@rd$ grind you down", it's "Noli nothis permittere te vexare".

A more credible spelling of the snappy version is given in http://www.tes.co.uk/section/staffroom/thread.aspx?story_id=1565849&path=/further+education/&threadPage=29&messagePage=1
(post 8): Nihil carborundum illegitimi.

How do you personally deal with crippling illness?

I dont have crippling illness, but I have a fatal illness. Does that count?

Though Nil is often used as an abbreviation for Nihil.

There are many more google hits for "Nil desperandum" than for "Nihil desperandum", though the sites that use Nihil appear generally the more learned ones. So there you are:

Nil carborundum illegitimis
or
Nihil carborundum illegitimis

Whichever you fancy

Illegitimi sorry

But the verb should go at the end of the sentence:

Ni(hi)l illegitimi carborundum

RF

Fatal illnesses can become crippling, SpaceCadet. My father-in-law needed a wheelchair in the closing months of his prostate cancer.

I'm suffering from cancer myself, I wouldnt it so far as crippling, but I suppose they depends how you define that. I cant say I'm not in pain, and that I dont feel so weak occasionally that I might fall over. But I hate to complain, which is why not so many people know. The problem then is when I get frustrated with people who make huge problems out of little things

Towards the end of his life, Dad was in constant pain. As for crippling, it was all he could do to get upstairs to bed. Mum had a toilet installed downstairs for him. There was no way he could walk anywhere. And yet he refused to acknowledge that it was inadvisable for him to drive. In the end we told him he couldn't - he'd have been driving under the influence of drugs (he was on morphine). Mind you, towards the end of his life he spent most of the time asleep, but that could have been because they couldn't get the dosage right. There's a fine line between relieving pain and knocking somebody out.

This amazes me, you know

There's one woman a bit further back on the thread with 4 out of place discs; there's Jack who's arrived with terminal cancer - and they both ask "Does what I've got" count as a crippling illnes?



Surely ANY ailment that is interfering with our quality of life can be defined as "crippling"!

And surely, any medication we are prescribed that gives too many "acceptable" (pah!) side effects are equally crippling?

BTW, before I forget, Cheerful Dragon - DON'T wait for your GP to get the OT to you - ring up your local Social Services and ask to be put through to the OT department. State your situation, ask what they advise. Point out that your GP *has* metioned it to their department, and you're just wondering if the paperwork has been lost.

And then do the same thing each and every week until you get a response

Much the same with Physio... (tho your waiting time didn't sound too bad to me - there's a 31 week waiting list where I am) Ring the department each week and ask each time whether they have a cancellation.

I learned the hard way that if you simply rely on The System to work... (it's this British thing, isn't it, of forming an orderly queue and being polite)..then it doesn't.

Oh... the System works fine, in theory

But it seems to me, that it's you, the patient, the ill person, that has to constantly nudge it along.

And it's exhausting when you're able bodied, so when you're under par, it is doubly exhausting, doubly frustrating.

For what its worth, I'd suggest keeping a diary system - and politely and firmly make yourself known to every Organisation that you feel is going to be of benefit to you. And keeping plugging away at them

It was this reticense that I found so difficult to overcome - but think about it - there is a (fairly) good medical sytem and Social structure, apparently designed for any of us who are ill or in pain. It's ours. We elected our government to impiment it, and those who work within that system *chose* to serve the sick.

We paid for it, through direct and indirect taxation.

And yet, when we ask or need to utilise this service we are told how *difficult* their jobs are.

We are supposed to feel grateful

We are made to feel we are a nuisence

We are made to believe we shouldn't complain because of all these other people who are so much worse off than "you" are.

Well... Bum to that.

It's manipulation and unecessary misery, ladled onto a vulnerable sector of the community. And it seems to be a Western Trait.

I was discussing this view with my Accurpuncturist;

he couldn't understand why we in the West were so wary and embarrassed to go and see a medical practitioner, be they Alternitive or Oliopathic.

"In China" he said to me, "It is the patient who is god, and it is we the doctors who choose to serve them"

As an ex Alternitive practitioner, I had a similar view point. My patients/clients were the most important people in my professional life. They came to me, hoping and trusting that I could help them - when I could, I did my best _- I never promised a cure, and if I felt what I could offer wasn't in their best interests I found them someone I believed could do better Their well being was important to me.

When it came to the crunch and I turned in desparation to the NHS, I found their attitude was completely the opposite, generally speaking.

Has anyone else nooticed this?