After a stressing three weeks I got my ESA50 filled and away last week to ATOS. Tomorrow I have my next Occupational Therapy appt. at the hospital. All those nasty emotions are back again. I just want it OVER. But unfortunately it will just be over till the next appointment comes around.
This whole therapy course has been anything but therapeutic. In fact it has made me worse all round instead of better in any way.
Originally on my referral from my Rheumatoid Consultant I was excited to finally be getting the help I had felt I needed for many many years. My assessment renewed that hope, the therapist promising to help me get me back so speak. On my second appointment I learnt the truth, she quipped, "there is method in my madness", her intent wasn't to get me the help or aids mentioned at assessment time. It was to 'make my hands stronger' and that would fix everything. No aids, no help and now the flare ups amass from attempting to follow her 'method' which is madness IMO.
All I've got is a lot of stress, talked down to like I was the village idiot, and two plastic bands to use in my hand exercises. My hands which have been on the lower end of the pain scale for several years are now so painful to even attempt to use due to the course of treatment my therapist put me on. When I kept repeating I needed pain management help as my hands felt ready to explode and kept me awake most nights I couldn't even grip a pen for more than a few seconds before cramping pain causes me to drop it altogether. But that doesn't matter apparently, the fact that their shiny hand/thumb grip/strength machines say I've went from under 10% minimum strength to around 15%. Wasn't that great!!! No ... what about the cramping, pain, numbness ... and all the other problems? Totally ignored as called 'it doesn't matter' and written off as Fibro pain. My hands/wrists have arthritis not Fibro.
And every appt. since has got worse:
- Instructed to stand and sit in 10 minute periods and I would be able to eventually walk around for 3 to 4 hours if I want. Totally against the orders of both my Physiotherapist and Specialist who say my legs (knees esp.) have degenerated due to RA and to do this would hasten further degeneration and I would loose all ability to stand and walk quicker than would happen otherwise. My legs can't handle the pressure to doing this at all.
- Argued with saying I had Osteoarthritis at last appt. which I don't.
- Told my RA was under control? Nope I was referred to her because my RA has flared badly and moved into more joints over the last year or so. So no, it isn't under control as she blithely asserted last time.
Those are just a few of the lovely assertions made my therapist. Also when told that I required walk in shower by both council OT and this OT was refused one by council OT as they 'don't put them into upstairs bathrooms'. Her response, go to council ask for my own flat, all on one level flat, and they would put the shower in there. I need care on a daily basis which my Mum gives. I can't cook, brush my own hair, wash hair or attempt to shower (which I can't do now as I can't use the over-bath shower due to my disability getting more advance). It doesn't matter that the flat would be in a block of flats as long as it had a lift to the floor the flat was on. What about when lift is out of commission. I can't walk up and down stairs that such blocks have and I know the lift shutting down can be regular as my godparents lived on the 21st floor of one such block of flats and the lift was out quite regularly.
Also one of the biggest problems with that suggestion?
There is a severe lack of social housing and it took years to get this semi as we had to move here because of my growing disabilities. This mythological flat just doesn't exist. Also what is cheaper? Put a walk in shower into my semi and removed and reinstall bath when/if I leave here or me move into my own flat and then have to claim housing benefit, council tax benefit and so forth as I can't afford to live alone.