The (not so old) Crocks Cafe -Part 2

KxMx

Well i'm still a member of this club, it seems 18 months of tests are not enough and more needed. Only the machine is broken for one and won't be fixed until end April, and Consultant has to apply to PCT for funding for the other.
In the meantime I am again left hanging, ill, with no test dates/ return appointment which might resolve things.
I am 24 next week, another year I cannot go out to celebrate and can't even eat anything nice this year (which last year was highlight of my day).

What a great life!

Jojo_the_Tightfisted

Hospital physio/pain clinic has turned out to be a 'back to fitness' course. 6 weeks of twice weekly gym sessions, with lectures afterwards. I think it is supposed to encourage me to shift my carcasse more.

The first session consisted of me looking a heck of a lot healthier than the other people there. But they all seem to be post spinal or knee surgery. Unlike me with general crapness of everything. But even then, I know the logic - the stronger the muscles are, the more they hold your joints together and the less likely they are to pop out and with the RA, the less likely deformity is to increase.


I'm sure some of the people there will think I'm a fraud, as my spine is silly flexible, like everything else about me. Plus I've done Pilates, studied Alexander Technique, been at intermediate yoga, kick boxing and weight training. So I know how to use the machines.

The advice was to not do a single thing that caused you discomfort during the session. Well, that counts out lying down, sitting down, standing up, moving, staying still and generally anything up to the point of being dead, then. How can they say 'pain means you're doing something unsafe' when pain means that I'm still breathing? [takes deep breathes and smiles sweetly]

In that first session, I had to explain to some poor woman how to get up from laying on her back, as nobody had never taught her how to use her bodyweight to turn her onto her side and she was stranded. I also spotted her getting a head rush later on in the session, so ended up getting the physio in charge to come and see to her after I had guided her into a chair. What I told her (as she was in such a state about being useless post surgery and wanting to get back to normal) was that once you learn to do things like getting up and down, it becomes second nature, but yes, it is pretty crap being in pain. But all the time I was thinking to myself 'At least you will get better'.


My cynicism is being kept under control with considerable effort. And copious quantities of painkillers.



On a more positive note, the hypermobility has meant that I am getting even better at bass, as I am reaching across ridiculous distances to reach the different frets. And nobody in a club bats an eyelid at a bass player looking slightly medicated and with a double scotch on the go.

formaldehyde_perfume

sunnyone wrote: »

You need to inform the DWP that you are volunteering and I wouldnt be surprised if they haul you straight in for a medical but its not worth the hassel of being caught out if you dont inform them.

Some people say that you have to inform Blackpool too, I dont think that you need to unless you are on your feet for the four hours or other things that go against what you wrote in your DLA application.

Its good to have a hobby and things to look forward too.

Yeah, when I have a regular thing sorted out I will tell them and the place is a registered charity but I will also explain strongly that it is sitting/standing in a gallery making sure people don't damage the art work and some minor paper work.. Which to be frank will probably be exhausting and I'll need the next day as a 'lazy' day to get over it.

I wouldn't be surprised if they do that to me too, but I need to get out (it's even the strong advice of my psychiatrist) otherwise things will get worse and I'd rather fight the DWP than spiral downwards out of control.

juno

I hate my postman

He brought me a letter from the DWP saying it's DLA renewal time, and a letter from my doctor saying I need blood tests.

KxMx

Good news I was granted funding for my test and I go in for the day in a few weeks! So hoping this will be the last.

Trialia

Thankfully, my friends in Japan are all okay and have checked in... I hope it stays that way. Still so worried about so many people who are missing that I *don't* know personally, though.

mcculloch29

Trialia wrote: »

Thankfully, my friends in Japan are all okay and have checked in... I hope it stays that way. Still so worried about so many people who are missing that I *don't* know personally, though.

Some horrific - almost accidental - glimpses, on the news there. The death toll will surely be in the thousands, how I hope that I am wrong, but I cannot see how I can be.

Trialia

mcculloch29 wrote: »

Some horrific - almost accidental - glimpses, on the news there. The death toll will surely be in the thousands, how I hope that I am wrong, but I cannot see how I can be.

There are confirmed nearly a thousand people missing and dead already, and this is only the day of the quake, so it's still really chaotic everywhere. They just had another aftershock near Tokyo - 6.6. Kobe was worse in terms of death toll early on because the epicentre was in such a populated area, but this may prove just as bad, yet.

TheBottomLine_2

Just thought I'd pop in for a bit of sympathy for myself. I've been filling in the ESA questionnaire to send off to ATOS and after writing about all the things that are wrong with me I'm feeling really low, there's just something really sobering about listing it all in one place.

formaldehyde_perfume

TheBottomLine wrote: »

Just thought I'd pop in for a bit of sympathy for myself. I've been filling in the ESA questionnaire to send off to ATOS and after writing about all the things that are wrong with me I'm feeling really low, there's just something really sobering about listing it all in one place.

I totally agree. It always takes it out of you, but you will feel better.