not looking disabled?!

sunnyone

Trialia wrote: »

The part about HRM was addressing Daska's last comment - basically saying that if the NHS won't let me have a powered chair, I can't afford to get one by myself.

I'm really starting to worry though, there is a threat of losing funding to my local Shopmobility and if they do that, I won't be able to go out anything like as much as I currently manage - I can only walk so far with only my walking sticks without running myself into the ground, and it isn't very.

Why do I have trouble using a manual chair? Well, because my shoulders, wrists and fingers (and most of my other joints too, but they're the relevant ones here) dislocate at the slightest wrong angle or pressure on a good day - on a bad day, they're even worse. That's why I can't self-propel - even with any aids I've seen. I live alone, I can't rely on my carer being there when I need to go out.

No, I don't. Mostly because although my current GP agrees I will need one full-time sometime in the next couple of years, she also thinks that there's no point in harassing the hospital so long as I'm trying to do my best not to use one unless I'm out shopping or at the hospital. That said, we're going to have to re-evaluate that if they do scrap SM for the city, because I won't have access to mobility help beyond my stick then, and I cannot manage going around town more than from the bus stop to chapel without it, most of the time.

Unfortunately, I also can't "continually ring" anyone - phobia of telephone calls because I struggle to process unfamiliar voices out of the feedback that comes with phones. But if it comes to that, I could always go in every time I'm at the hospital - once a week or more! =P

I think that most shoprmobility schemes will be taking a huge funding cut from LA's this year which is terrible because they really help many disabled people and in more ways than just an aid to shop which most none disabled people dont understand.

With your GP batting for you and well documented reasond as to why you can't self propel you should have a decent chance of getting a powerchair, do you have support from consultants in the same hospital (or hospital group) where your local DSC is?

I cant selp propel but I still have a manual wheelchair, it comes in handy for some things because powerchairs arn't the answer to everything which is why I went 12 years between the one I had when my son was small and getting the one I have now.

You can get accesories for both manual and powerchairs provided with NHS wheelchairs which can make life much easier, I have been provided with everthing I wanted, a neck rest on my manual/headrest on my powerchair, very expensive (close to £500 each and I have three) pressure relief cushions and trays that slot into the frames which make life easier indoors, I have to use a manual upstairs and I can pull myself along easily because its very light, could you try an ultra lightweight even if its just to keep incase you need one?

Having a wheelchair counts for you with wheelchair services but you know your own situation best.

When I said ring I meant as in what normal people do to contact others, I cant use the phone because Im severe/profoundly deaf but I still use ring, I cant walk but I still use walk etc.

sunnyone

daska wrote: »

TBH yes, there are times when I can't use either one of my scooters, the little scooter does at least let me lean forward and rest my head when I'm really tired which has, on occasion, been the only way I've managed to get home and not fall off en-route. But with DS2 having delayed development I need my chopper style scoot to transport him safely when we're out unaccompanied (he walks under the wheels or runs away if I use my little one). You have inspired me to have another push for a w'chair that meets my needs. Will write this time, asking for their justification for giving me a chair that they know I am unable to use.

You can get a head/neck rest for nearly all wheelchairs and i have them for two of my chairs because I have two slipped discs in my neck, I carry my small grand bubs on my knee the same as I did when my son was little but I dont know how we will manage when hes bigger but Im never out on my own because I can manage alone anymore but Im hoping to get a drive from wheelchair WAV eventually (when we can afford one which with my husband being so ill it will have to wait) so I have plenty of time to decide what to do.

My grandbubs is happy with a hand holder for now, my son was on one till he started school and I hape the bubs will wear one till hes quite big too.

A_Flock_Of_Sheep

I have a Blue Badge and I only tend to use it when I can't find a suitable non disabled parking space somewhere. I know you can get free toll bridges and the London charge waived but I have never done that yet.

Trialia

Sunny, I could try the ultra-lightweight, but I still don't think it'd work for me, mostly because I have a hard time moving just my own weight without dislocating something, let alone my weight in something else.

That said, I do have support from various departments in my local hospital as of November just gone, and orders about movements I can and can't make from my physio and occupational therapists, so those will probably count in terms of help. It was before that I was last assessed, so, yeah...

MrLeeLee

For me personally (being a wheelchair user who can't walk at all) using my blue badge means a whole lot more than "being able to park close".

It is all about the space between each space, if there is no disabled spaces free, I have to go somewhere else, because I know that if I park somewhere else in the car park and someone parks beside me, I am fu*ked when I get back as I wouldn't be able to get back in my car and would have to wait around until the person beside me returns to their car.

I think a lot of able-bodied people just don't understand little things like this that disabled people face each day and just see blue badge spaces as spaces that allow disabled people to park closer (which does also help many disabled people)

sunnyone

Trialia wrote: »

Sunny, I could try the ultra-lightweight, but I still don't think it'd work for me, mostly because I have a hard time moving just my own weight without dislocating something, let alone my weight in something else.

That said, I do have support from various departments in my local hospital as of November just gone, and orders about movements I can and can't make from my physio and occupational therapists, so those will probably count in terms of help. It was before that I was last assessed, so, yeah...

Thats good news that the people involved in your care are supporting you, I'm lucky like that too and it really does help with wheelchair services, I have been given everything I asked for and I have always had a wide choice of wheelchairs only limited with what the NHS provide but its still a wide choice and the wheelchairs that I have are perfect for me and the accesories cost a bomb ie. a tray costs over £200 :eek: which I could never have justified spending so much myself but it was ordered the day I asked for one and it was a fitted week later (it slides off but the wheelchair maintanance company have to fit them the first time, they even fit the cushions)

I hope that you get sorted out soon, it made a huge diffrence to my life and they help to keep my pain under screaming level but I do wish that I had done is much sooner and them I might of been able to stand up/drag my legs a couple feet now which would make my life so much easier but I waited till I had no choice but to use a wheelchair fulltime and I regret it now.

tooties

Just to get back to the original topic for a moment...
OP if anyone tells you that you dont look disabled, reply sweetly" and you dont look stupid" usually works for me lol

Errata

That works even better if it can be said in Serbo-Croat or Finnish

TheBottomLine_2

tooties wrote: »

Just to get back to the original topic for a moment...
OP if anyone tells you that you dont look disabled, reply sweetly" and you dont look stupid" usually works for me lol

Oh I said that to a woman on a bus once, it felt fantastic! She was like "you don't look blind" and I'm "well you don't look stupid". Laughter from the other passengers put an end to the discussion. :rotfl:

intranicity

tooties wrote: »

Just to get back to the original topic for a moment...
OP if anyone tells you that you dont look disabled, reply sweetly" and you dont look stupid" usually works for me lol

I'll remember that for future use

As to who needs or doesn't need a badge, it's a shame people are here having to justify it or not, I have a badge, no wheelchair or sticks, but still suffer, I have good days and bad. Sometimes I really wish i'd lost my legs, at least I could get on with life!!!! and not suffered a spinal injury (I'm a War Pensioner if that gives a hint) that makes me look normal, but still in constant pain, I take anything between Diazepam and OxyNorm just to survive. I regularly am stuck at home unable to even get down stairs, I could go on. BUT I ALSO NEED SPACE to get out of my car, I have to have my doors fully open, I can't do the slide in shuffle through a 6" gap.

I do though, wish traffic wardens and the supermarkets would police/check that people using a Blue Badge is actually the person on the card, We all have to suffer from people that are lazy and can't be arsed parking and walking to the cashpoint or 'borrow' badges, BUT WE SHOULDN'T BE DECIDING who deserves a Badge and who doesn't, many of us already have that problem with the powers that be as it is......

RANT OVER :mad::mad::mad: :beer: