The (not so old) Crocks Cafe -Part 2

Indie_Kid

Tribunal papers are through. Whoever has dealt with my claim really is clueless. According to them, partial sight doesn't cause any problems (bearing in mind I'm also colour blind) with getting dressed or no problems with walking up and down the stairs - my eye condition means that I tilt my head. It's impossible to walk without tilting at all.

mary-op

Trialia - belated ''happy birthday'':T

sh1305 - that sounds so unfair - do these people understand nothing ?

Well my wheelchair arrived today ! Wasn't expecting it as only asked occ.therapist last week to refer me to nhs wheelchair services. I've tried it out and it's fairly comfy though I'll need a pressure cushion.
Monday they're coming to fit the extra stair rails, bedrail and headrest for the bed..............we've got a new bed arriving Monday as well so it's going to bedlam here I can see it. Still at least things are getting done thank goodness.:)

Indie_Kid

I don't think they do understand. It has taken them 3 years to accept that someone who is registered as partially sighted has reading problems and that aids don't help. (people registered as partially sighted or blind have eye conditions that can't be corrected enough by glasses or other aids)

sunnyone

I got my new cushion on Wednesday and I hate it, its not the one I normally get because I now need a higher tech one because I have had some pressure issues of late.


http://www.activemobility.co.uk/shop/jay-2-wheelchair-cushion-p-593.html

mine has the Tritex cover

Thank god I have two of the ones that I like, I know I need the new cushion and it better skin protection so I will start using it a short time each day and build the time up till I can sit comfortably on it.

Trialia

Had my first hydrotherapy session today! The therapist seems pretty worried about my dislocating constantly, but I did try to reassure her that it happens whether I'm in the water or not, just as frequently, and it's much more painful when I'm out of water. Hopefully they'll say I can continue after they assess my range of movement, as apparently they wanted to do that before my first session but nobody arranged for it. I ache now and lost a lot of my day to that and exhaustion, but I can see this possibly doing me some real good in the future if I keep going.

mary-op

Trialia - At physio on Thursday it was mentioned that I'd be offered Hydrotherapy ........think I've a range of excercises to get through first though.
Hadn't heard of it before but sounds like it could do me some good............hope so.:)

sunnyone - I never realised pressure cushions were so expensive :eek: Hopefully I dont need one of those sort. There must be cheaper ones around.........:)

sunnyone

mary-op wrote: »

sunnyone - I never realised pressure cushions were so expensive :eek: Hopefully I dont need one of those sort. There must be cheaper ones around.........:)

You dont have to buy one, you are entitled to a NHS one, ring wheelchair services and ask for a cushion or a cushion assessment, even "cheap" pressure cushions are expensive and its not worth getting sores/being in pain from being in a bad position etc.

My favorite cushions cost £170 each and are perfect for me, they are anatomically shaped memory foam gel, my new one should be even better for my skin if/when I get used to it.

There's nothing cheap about being disabled........................

SingleSue

I loved my hydrotherapy even if at times it made me exhausted and in pain, especially on the first few sessions where they were seeing what I could and couldn't do.

It dropped my stress levels if nothing else!

I am currently sporting an arm and hand that looks like it has been griddled, the result of a dropped rack which had just come out of my halogen oven (which had been cooking at 200 degrees)...curses to these useless hands.

eskimo26

Hey all, just had my ATOS medical expecting to get the heave ho from ESA any day now.

Have had CFS since 14 years old (over 10 years).

I wanted to say a few things, the first is that I have done a group lifestyle course recently at the local CFS clinic. Meeting other people i didn't have to explain it all too was a huge relief, learning about pacing, grading and relaxation was an eye opener.

Amazingly my GP didn't send me, we heard about it through my mum's friend and we had to go and ask my GP! Slightly the wrong way round no? I would have thought after being with me since my diagnosis my GP would now about these clinics, over 10 years to find out isn't asking to much surely.

Moral of the story is find your local clinic and approach your GP for referral if they haven't done this for you already.

Other thing is i have just started the controversial Perrin Technique. It claims to have a 40% success rate in improving or completely arresting CFS, current clinical trials are being done in collaboration with the NHS so someone believes in it.

Its painful as hell though as it involves lymphatic massage (manually clearing the body of poisons). My practitioner explained the initial pain is how you know its not a placebo (fair enough) and its because poisons are being manually pushed through the body which it doesn't like. I must say i trust her explicitly, not only is she a lovely person but appears to be a highly accomplished osteopath. Was wondering how others have faired with Perrin technique and what peoples thoughts are on it?

Anyway right now am paying through the teeth for an increase in symptoms.:T:rotfl:

Should i keep you all posted?

Careful_with_that_Axe

Eskimo, I am interested in whether it helps you, and I sincerely hope it does. I tend to be sceptical about this type of thing, but so long as you go in with your eyes open to the fact it may not work. We're all searching for something that helps us, so I would never pass judgement on someone who decides to try something contraversial or different.