The (not so old) Crocks Cafe -Part 2

Indie_Kid

My tribunal papers are through and they are certainly talking about another person!

mary-op

sunnyone - you're not kidding......everything seems to come at a price doesn't it.
My wheelchair has a cushion of sorts but I think I need something a bit more if you know what I mean.
Occupational therapist is here onWednesday so I'll mention to her about it.:)

sunnyone

eskimo26 wrote: »

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?

My husband has been given an appointment for a medical lol :rotfl::rotfl::rotfl::rotfl::rotfl:hes currently in the support group and he was so much better then.

He has stage four kidney failure, a heart condition which leaves him so out of breath he can barely get around the house, his parathiroid is fluffed and loads of other things, he has also had a full ischemic stroke which may mean brain surgery to remove the resultant clot...........

But he might be found fit again for work, our GP is yet again writing a letter to say how ill he is and we are going to ask all six of his consultants too.

He is barely excisiting never mind living at present, he has so many problems steming from his stroke if his kidney failure meant the support group he must now need the high dependancy group.

sunnyone

mary-op wrote: »

sunnyone - you're not kidding......everything seems to come at a price doesn't it.
My wheelchair has a cushion of sorts but I think I need something a bit more if you know what I mean.
Occupational therapist is here onWednesday so I'll mention to her about it.:)

I dont know your seating needs but you are definatly entitled to a decent cushion, when you first get the right one you use it everywhere because its the most comfortable you have been in years:)

My new cushion is the wrong size and I think thats whats causing my discomfort so I am going to try it on a diffrent wheelchair to see if it works in the right width wheelchair.

Indie_Kid

sunnyone wrote: »

My husband has been given an appointment for a medical lol :rotfl::rotfl::rotfl::rotfl::rotfl:hes currently in the support group and he was so much better then.

He has stage four kidney failure, a heart condition which leaves him so out of breath he can barely get around the house, his parathiroid is fluffed and loads of other things, he has also had a full ischemic stroke which may mean brain surgery to remove the resultant clot...........

But he might be found fit again for work, our GP is yet again writing a letter to say how ill he is and we are going to ask all six of his consultants too.

He is barely excisiting never mind living at present, he has so many problems steming from his stroke if his kidney failure meant the support group he must now need the high dependancy group.

That's ridiculous that he's being assessed again. I could understand it if his GP had said he was better.

sunnyone

sh1305 wrote: »

That's ridiculous that he's being assessed again. I could understand it if his GP had said he was better.

If it wasnt for our GP he wouldnt be able to cope, he gets so upset and confused now but she is always their to help, shes one in a million and everyone should have access to a GP like ours.

I miss the man I fell in love with but I love the man he has become, if that makes sense.

formaldehyde_perfume

Dunno what happened when I phoned before, but I just phoned social services again and the lady was really good, started the initial part of the assessment and a duty worker is going to phone me back in the next few days to do a bit more of the phone assessment and arrange to come out and see me, the lady mentioned an OT assessment for my bathroom which sounds promising.

I feel really good that I've managed to start the ball rolling and hopefully soon the pressure will be off my mum as she's really struggling and I feel so guilty.

LameWolf

sunnyone wrote: »

I miss the man I fell in love with but I love the man he has become, if that makes sense.

It makes perfect sense to me.:o

formaldehyde_perfume

LameWolf wrote: »

It makes perfect sense to me.:o

And me. :T

black_paw

sunnyone...from what i read and happened to me ..IT'S for the gov figs ...there turning down all benefit re-news ...turfing off the ill people in support group even with hospital/speci/doctor letter/reports ....madness ! and the tribunal are now 7-8 months ..i have tribunal next week , lasting from last july and asking for any cancellations ! this came about as atos medical stated i should be better by now ! and all money stopped too (usual ) BUT TO GO 7 MONTHS