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

Thanks abbi, yes purging helps the mental frustration certainly.

*If* i could get to the Catholic Secours maybe something would be possible re: wheels but as always, it's a vicious circle; without being mobile you can't actually get to these places & i really can't afford to spend more on phone cards, plus it's very difficult & expensive trying to explain complicated stuff on the phone in French. I don't know whether you are actually allowed to have wheelchair type stuff without the magic 80% invalidity card, i was classified as 79% at last medical (before the Bloody Knee)

How do wheelchairs cope with cobbled streets & getting up & down kerbs,and hills; Angoulême is one massive hill! Cos i would have to do it all by myself; i imagine that would need bloody strong arms! Mine aren't bad, but maybe need to do weight training or something to be able to haul self around? I have only ever seen people in wheelchairs here who have a pusher; i wouldn't have that; & even they have to go in the road 'cos the pavements (sidewalks) are too narrow.

Te he, skankydawg pulling a cart would be; should i start teaching him "Mush!" now?!!! I reckon he would actually be big enough to do so when full grown; he is the size of a fullgrown fox terrier now (8weeks) but with paws of an Alsation; hey, he will be a good guard dog, i was upstairs earlier & the neighbour knocked (i took in a parcel for him)& skanky for the first time barked, proper bark, not a puppy yap. It's not easy having a young pup around when i am like this, but i do think the benefits of all the training should pay off in the future: companion, guard, helper etc. Plus he is so very silly & that he cheers me up! You should see his ears; honestly, i have never seen anything so daft!!!!

*but having just written that he needed pee, so i had to rush out quick (he's at the learning to ask at door stage)which involves timing of seconds to avoid accidents, didn't take leash, he narrowly avoided being knocked down 'cos i managed to get driver to stop; very stressful, it must be the same for mothers of toddlers; they *have* to have some freedom in order to learn the limits but meanwhile mummy is having 19th nervous breakdown. In fairness, he did come back to me when i called him.

But the house smells of puppy pee, despite me mopping every day, i can't grab every accident quick enough, let's hope he gets trained properly before winter sets in, can't keep all doors & windows open then.

zdt

A charity has no requirements like the gov in getting a chair except for need. They "lend" them to you at no cost. However, I do not see that being helpful unless it is electric and those you do have to qualify for an are very expensive. I want a scooter like MK2 , smudgers wife has. It would give me more independance.

A picture to show you of the cart/chair seat/walker would be good.
I'll look for one and post it here. Outside the house I have to use a chair with a pusher. I do not have the arm strength(neck) to propel myself.

The dog sounds like he would be large enough.
You do start early with a cart ( 6 months or later though),be sure he gets used to a harness if you are considering it.
The harness would be the first step and that alone is easier on all that a normal collar and leash.

There is also new leed called a gentle lead(sp?) My small and frail friend with a gigantic greyhound and my larger friend with an excitable large golden puppy say they work like a charm! I will try to find a picture of one for you. Painless for the dog and the person.
They look like a muzzle at first glance but they are not. The dog can drink and eat and bark with it on.

Pedboy uses his dogs for pulling.
He is a member who rarely posts but he is experienced with dogs and MS.I think he might be able to share some info with you.

Moms with strollers do have many of the same concerns and problems. Terri it is nice ( like you) for those Moms ,you noticed!

Thanks abbi, honestly, any help in practical terms is what i need right now, it is getting ludicrous; i spend most of the time in floods of tears cos i just can't see a way out of this; i am trying not to eat or drink cos i can't get upstairs to the loo.

I knew it would come to this, without family or close caring friend or government assistance or money, you are 100% totally stuffed.

It's ridiculous, i am actually quite a strong person; i am not in fact depressesd or helpless; merely in despair that there seems no way to sort the practical problems out.

The thing probably won't work 'cos since the Bloody Knee, he has got very bad with walking on a lead 'cos i can't keep up with him (obviously) so now he is pulling & this will become a habit, it's tragic 'cos he was brilliant, but i simply cannot do more than hobble very slowly right now & if he swaps sides he may trip me up so i have to be nasty to him; it is breaking my heart not to be able to train him properly.

I just feel now all i can do is make sure Yoda & skanky are OK & give up; i can't carry on; if i can't even get my essential meds 'cos i can't get to the doctor; it feels like society is trying to tell you something doesn't it? "Oy! You! Fifty years old & a drain on the rest of us!!" time for me to be a bit realistic i think!

zdt

Wish you had the practical help you need.
Maybe you need to find him another home

I am coming to that conclusion. It's just really really bad luck that i did the knee in at this time, i was managing fine with just the normal probs, but this is too much & it's not fair on him; best if i get him rehomed while he is still young enough to relearn stuff according to someone elses terms.

The only real temporary solution is maybe Gabo would walk him for now; but can't get hold of him; he left me a card, which was lovely of him; but can't get him on the phone.

It's a real shame 'cos he is just getting to the stage of understanding (!but not necessarily chosing to obey straight off!) commands & asking to go outside to pee & stuff; someone else will get the benefit of the early days hard work, not me, if i have to rehouse him; which is lovely for them, but a total pi**er for me. It's all a gamble, the knee might be betterish tomorrow, or i may twist it again; or it might never get better. It's all a bit like "ah, there's another hurricane approaching, do we evacuate everybody, it doesn't hit & we get told off for panicking or; assume it will be Ok then get told off 'cos it wasn't Ok at all?"

zdt

YAY! Your knee will be fixed soon ( it looks like)I hope, I hope, I hope.

You will be able to keep him I am so very glad about both of those things

Right, i think i will have a whinge on here for a change instead of on the cripple thread!

It's the little things that finally make you despair. In my case today it's bin bags (refuse sacks)I ran out two days back, so rubbish is being stuffed into little plastic bags, which are now heaped under the sink, smelly, inconvenient, unhygienic & totally pi**ing me off.But i can't possibly get to the supermarket to buy any more. I can just about manage to get to the fruit & veg market on a good day, which i did yesterday, but of course pay the price today, even with double meds it's agony to move & double meds mean frequent trips to the loo, which is upstairs, so more pain.

The shopping situation is becoming beyond a joke. I haven't even had bread for the last 3 days, by the time i made it to the market, they had sold out. Yoda is sulkily munching through a tin i got her at 3X the normal price from the late night store, it's just about possible for me to get there (again, on a good day only) but i can't keep paying these prices!

I can only really afford to stock up at the El Cheapo supermarket & that needs a car. Viking is off the scene, gone back to his nice non handicapped ex (partly, i am sure, 'cos i can't do fancy sex stuff with a clobbered knee!)& anyway, when i did beg & plead for him to take me shopping i never heard the end of it, 'twas used as emotional blackmail. Patrick N is very busy & since he is kind enough to accompany me to hospital, don't feel i can ask him for more. Ollie is out of the question, he is up to his ears in work, has new girlfriend & is getting fed up of me asking favours. Ain't nobody else left.If you can't get out, they forget all about you.

I saw Gabo on the market trip, he promised to go shopping (on foot) for me, but, typically, hasn't turned up.

My only alternative is this shopping delivery service but having just worked out the least i can get away with, to order 55$ of stuff costs 8$ to deliver, it's ridiculous, i could get twice as much if i could get to El Cheapo, but a taxi would cost 20$!

No can do; have to pay phone bill (35) wanadoo backlog (75) Electricity backlog (75)this month on top of the normal bills.

The place is a tip, it is depressing me beyond belief. I was told "someone will come & assess your need for home help" that was a fortnight ago. Right now i would like to sort the many bits of paperwork out, but that needs a bag to put the mountains of rubbish in. Can't get at the bags, 'cos there's too much rubbish in the way. so things end up getting left lying around 'cos i simply can't bend down to put them away, so i end up tripping over them...whoops, there goes the knee again!

Have been forced to rehome skankydawg i just can't take him for a walk any more, not even slowly, he is too big.

I am actually bloody hungry now, but until i somehow get some shopping in it's a bit of a problem & it's not going to go away.I only eat one meal a day at the best of times, but looks like today it won't even be that. If i end up with delivery service, that doesn't come till Wednesday; luckily Yoda has plenty of bikkies to tide her over.

It's a vicious circle, if i don't eat, i have no energy to tackle the problems, but since i am limited by what i have left in the stock cupboard, which is low down & pretty inaccessible i tend to simply give up, if i had bread, i would make a sandwich (er..if i had something to put on it, no cheese or eggs left now even!) I *might be able to make it to the boulangerie, but i am hanging on still hoping Gabo will come round.

Issues of support, indeed.

zdt

Terri I am sorry once again things did not work as planned.
I was especially hoping for the grocery delivery.
There are services for all if you can pay, usually a person cannot

I am worried about twinny finding out more about all this.
She has been living on the edge for sometime but with her daughter.
She may be able to get a subsidized apartment in a rural area. She will be alone for the first time and a long ways from the store and doctor and all else. I'm afraid it will be a rude awakening.

Her daughter is not going to be with her and from past experiences "out of sight out of mind" comes to mind. It is hard to forget all the things vital when another person has been sharing the same space and food , doing the shopping and driving ,et. Like all Moms she wants her youngest to get out on her own now that she is ready.. She is not thinking of herself as much as her daughter at this moment

She knows she can come here but for now she desperately wants to believe this can work - independant living. She has pride like all of us and would like to think she can manage, she needs to know for sure. I hope she does but I do not have confidence in the plan because of the lack of supports. She would move here now except for her doctor is good and the system is changing so for now, the less you can have your circumstances change the better. I understand her wanting to be independant. I cannot think of one of you without the other coming up in my mind.

Yes. I often think of her too. Do please try & gently encourage her to think about the absolute basic details. I was managing OK (not easy, as you know, the shopping trips were getting to completely shatter me before the Bloody Knee happened) but since that i am pretty much totally dependent on other people; it's a nightmare.

Patrick has said *if* the scan doesn't take too long he *might* be able to take me shopping.

Meanwhile, completely out of the blue, viking turns up. Someone suggested i time my scenes with him around my shopping needs, ie: be all lovey dovey, wheedle him into taking me shopping,then let rip with how i really feel about the situation. This seems like the ultimate humiliation to me; i think i would rather starve.

He is in "you are my best friend" mode,& wanting but i am being very cold towards him. I have explained that i cannot express affection towards him right now 'cos quite simply, i have very little of it left, i feel betrayed & hurt & he can't just pick me up & drop me according to his convenience.

I did say though "real best friends help each other, the help i give you is emotional support & a certain amount of practical stuff like meals, drinks etc. Right now i need help with shopping, can you do that for me?"

He ummed & ahhed, refused to go tonight, which is really when i need it, impossible tomorrow with hospital & he has electricians in. I have my student Wednesday. He has said *maybe* Thursday.

Living in a *maybe* world just as far as getting basic supplies in is pretty damn stressful, you spend much of the time simply trying to find devious ways around simple things like eating. For instance, i have instant mash & pasta, but to make them even remotely appealing to a depresed appetite requires margarine, or cheese, which i don't have.

All that saves me is the telephone & internet. If she doesn't have at least a telephone, she can't possibly do it alone. What happens when she runs out of toilet paper? She can't go whizzing to the shops (assuming they are nearby) or even phone a friend & say "next time you pass, can you drop me a couple of rolls off, thanks!"; which is degrading enough as it is, but if no option at all exists except to hope somebody knocks at the door....they don't, believe me. Even someone who had a pretty active social life & is no shrinking violet has found the hard way "out of sight, out of mind" applies.

Truly, housebound. around the legs.

You end up doing what i am about to do now, struggle to the very nearest place that can possibly supply the most presing need, in my case cat food, because all these *maybe*s may not happen. I have even got my student to take me shopping before now & may end up doing so again this week, but scared stiff she will think "hey, why should i use my gas & time to take her shopping & then pay her for the privelege," it's a total cheek!

No way should i be going out at night on wet slippery cobbled streets, but what's the alternative?

I am churned up in knots at the thought of depending on viking; but left with little choice. He knows damn well it's becoming his main function for me & i have to appear pathetically grateful.I got the classic "won't you give me a cigarette," tonight; i said "no, i can't afford to give cigs away, you have yur own tobacco" to be met with "Hmmf, well i won't take you shopping then!"

Best friend huh?

He did help me carry the rubbish out though & moved the washing over the bath so i can *try* & have a bath before tomorrows hospital appointment; to do either of those on my own would have me screaming in pain. I would far far rather pay somebody to do these things & if i ever do get home help, will indeed have to, so something else goes by the board, there comes a point where you can't cut down much more, already viking commented "why is it so cold in here?" "cos i am determined not to put heating on until December, can't afford it"

Please try & find a way for twinny to come to you, i would hate for her to find all this out the hard way, it's enough to have a physical handicap without having your remaining pride destroyed as well.



zdt

Hello there all.I hope you don't mind me interfering with your conversation ladies,i was lurking on abbis' page(as usual)
I suppose you'll have already thought of this terri,but sometimes simple solutions evade us when we don;t now which way to turn next.is there a teenager who lives locally to you,that you could"employ" for a little spending money ,who would do your shopping for neccessities daily,or even a couple of times a week.That way it wouldn't cost you anywhere near as much as a taxi,and it would give them a little extra pocket money.
My wheelchair is a self propelling one,and i don't have the strength in my arms to get myself around,although i wouldn't be without it.In England you have to go on a waiting list for electric wheelchairs,then they have you go to a centre to learn how to use it properly.
I have a scooter which my daughter bought me,second hand,but good for the garden and local bits,althoughi daren't go out alone.It is very heavy,so we can't get it into the car!

Abbi,we haven't chatted in a while,i do hope twinny copes by herself....added stress for both of you isn't good,so try not to worry my friend.
If only we had a .
s to all.

Definitely need a magic wand smiley! (even if we can't have one in real life).

The more the merrier smurfles - good to have your input.

Terri, my initial response was, just for this week, to pay the extra and get your groceries delivered. That gets you food, plus a break from relying on unreliable people (especially ones involving high stress or danger to your sense of self). But then I don't know how much money we are talking (was that euros?). Still, the food isn't just for energy, it's also for tissue repair, healing, strong nerves, emotional health. I know for me food is the core of everything - stuff gets much easier to deal with when I am feeling well nourished. Hunger and fullness is such a basic thing, all things seem to stem from it, and when I haven't been able to eat well or enough it's hard to sort out other things.

Wish I could offer something more bloody useful than my words though

Just ordered a months shoppping online, to be delivered here Thursday; yes, it costs more but worth it for the independence factor.

The idea of a teenager is something i thought of *but* they are often even more unreliable than my "usual" friends; if such a thing is possible!

I have decided i would rather pay a bit over the odds to profesionals & know for sure what i have ordered will arrive on time & i quite like rooting through the catalogue & half an hour tapping numbers in online is far preferable to an hour traipsing round a supermarket with a whinging "helper"!

for the internet, it's a godsend for people like us!

The only stuff they don't do is dairy products, but Patrick N just took me to El Cheapo to get those, so i will be well stocked up now.

Phew!!!

zdt

I have been sat here trying to think of ways to solve your worries terri,and i just realised how much help there is where i live,compared to other places.
We have a bus service,where the elderly/disabled can arrange to be picked up,and taken to the local supermarket(where they lend wheelchairs out),then taken back home again.
There must be other people in the same postion as you,how about having a word with your local council...or whoever you would talk to if you needed someone to represent you.Here it would b our local councillors..maybe they could organise a "shopping day" once a week.
I dont use the service ,because i haven't the confidence to go out without hubby,or one of the girls,but we do our shoping during the evening,and get a trolley that attaches to the wheelchair,,but of course it still has to have hubby pushing it.
We definitly do need a magicwandsmiley,but the magic wand would be better!!

When i was in El Cheapo supermarket today, there was someone in a wheelchair & a recent development is there is now a handicapped checkout aisle (they didn't use it of course, 'cos there was nobody staffing it, typical!)

But she was accompanied by two other people, one pushing her & one in charge of the shopping trolley. The town is just not very suitable for handicapped, it's an ancient medieval place on a steep hill. They have some sort of free bus that weebles around, but obviously you have to get into Centre Ville to get it, seems to go around the periphery of the town. It's not specifically for handicapped but you don't see it very often & not many people seem to use it. I have noticed more ramps up into shops lately too, maybe slowly but surely they are getting the message.

The mayor is the one to go to in france, anybody is free to plague him!

For now, i will try this delvery service & see how it goes.

zdt

YAY! Great news Terri about the shopping.


**********

I got good news for me sorta.
I was told years ago to stop using a golf ball in the dip at the bottom of your skull - start of spine. It is where all the nerves come out so it's just right for a pressure point. True could be dangerous which it why the physical therapists shriked "NO! Don't do that!" .

I know my body well enough to judge how long and how much pressure. It cuts off , cuts down the nerve signals.The doc said I have noting to lose now by using this method. It is amazing , do it for 5 minutes and works for about 45 minutes of relief. I have to be still and never do it while moving. My neck brace is the type that holds my chin so I can even hold it in place with it

My cervicle spine is sliding on the top over the fusion.
It is making swallowing difficult and messing with my carotid circulation in neck and head. This is making me goofy at times
I will end up on liquid M. at this rate.
I am scared of the last resort in pain medication and want to put it off any way I can. Maybe surgery will stave it off.



Coping Tip 42,000
Yay for golf balls!
The golf ball will help me get relief for a bit.
Lasts much longer than ice and does not have the rebound return of pain like ice can cause.
Balls can be great little massagers - for most a tennis ball is very nice for the neck and back. A smooth rubber ball medium hard is nice. Along side where the muscles attach - not right over the spine. Other spots as well
*********

Smurfles glad you are here
We welcome all chronic problem discussions and helpers because the coping is similar.

Oh yeah I have tried 4 experimental drugs for cutting down on the same signals. The trials were all disasterous for me. Apparently others did not fair well either because none made it to market.

There is a new one they want me to try before a surgery.
I am really sick of them and feel that I am pushing my luck.
They also cost about 2o dollars a day which I could never afford and the insurance companies rarely pay for experimental treatment. It would actually be some sort of torture to try something that worked then be told the company had no compassion policy. It has happened to many others. I cannot imagine the anger and resentment!

Off to sit with golf ball!

Yes, it's the little things isn't it? i have found "the perfect cushion" which i can use in bed to support the leg, so long as i position it carefully, i can actually get more than 2 hours sleep at a stretch!

And here on the computer, i am now resting leg on a huge larousse encyclopaedia, which keeps the knee bent at just the right angle.

Abbi, have you tried a squash ball? Not so rigid as golf ball, so could maybe be kept in place more permanently. It's acupresure basically isn't it?

When i had the scan yesterday i was petrified they would try & make me straighten my leg, but the guy knew exactly what he was doing & cushioned it all out with foam padding inside a cradle & it actually felt more comfortable than it has for two months...which goes to show that with the right support, these things can be made more bearable & thus our quality of life improves & so does our state of mind!

zdt

IT is accupressure
I have tried every kind of ball around here
I do not know what a squash ball looks like.

The golf ball is perfect because it fits in what is suppose to be an indention the same size.

Yes! So much of it IS simple.
My bed pillows are excellant - made a huge difference.

I do have to be careful about my right arm going numb. My face is a given when I do it and the vision in my left eye. I would live with it in place if I could but it is so obviously cutting things off that the time and pressure is key. At least I can read and speak afterwards unlike some of the expensive experiemntal medications

Thanks for listening Terri
I would love it if this could help others with headaches.
I would NOT suggest a golf ball for others but a tennis or perhaps squash ball. It helps muscle tension if you do the outer edges of indention rather than inside it.

A squash ball is pretty much the same size as a golf ball but is made of firm rubber (presumably that's why it's called squash, 'cos under very hard pressure it gives slightly) i think they come in different degrees of firmness, but it seems to me that having that slight degree of flexibility would mean you could wiggle it around & maybe hit the exact spot, which might be only a millimetre away!

I would imagine it's more comfortable too & could be put in place & used for longer periods of time.

http://www.squashplayer.co.uk/squash_balls.htm

te he abbi, they are going to accuse us of talking a load of balls!!!

zdt