Thursday, 9 February 2012

Knew It Was Going Too Well

I knew things were going my way a bit too much, after months and months of struggling I finally had my Occupational Therapy assessment last Tuesday, she sent an urgent fax to the OT from the council to come see to the adaptations I need to continue living independently.

It's gotten so bad that I haven't able to use my over the bath shower that the OT had installed for me just after we moved into this house about 8 years ago.

So both she and OT at the hospital say I need a different shower that I can walk into, the hospital OT called it simply a walk in shower the OT today said I needed a 'split level shower' given the degree of my disability now due to the degeneration of my lower limbs.

I'll never get better, the PT I saw just before Xmas said the same thing, the limited functionality I have with my lower limbs is caused by the fact I've had RA in this joints/limbs for 12 years and is a natural degeneration of my disability. So never getting better.

So I'm getting a hand grip attached to the side of my bed to help me in/out and help me pull myself up when in bed. If that ceases to work/doesn't work she will try a bed lift which is a motorised device put under my mattress ontop of my bed frame which will raise the upper part of my bed when I press a button. Eventually I'll have to use this as my condition further degenerates but she hopes that the grip will work for now.

I am also getting a stool for use in the kitchen, so I can sit and access the facilities, such as sink/taps and so forth.

Unfortunately while I need the level shower given the level of my disability they don't put then into upstairs bathroom.

She asked if we were considering moving any time soon, nope had to fight for years to get this better accessible house compared to our previous split level flat. So moving is out, even if we were interested it would mean uprooting my elderly parents from the home they don't want to me out of. The house they wanted in the area they haven't wanted to live in for over 40 years!

Not fair and to be honest it would mean moving away from my limited support network, my brother is close by here and we would never know what we would be moving into. Away from support, and you never know who your moving in next to. Plus the expense of moving, my parents have just began redecorating their house downstairs level and began moving up the staircase. They were planning to finally redecorating the two bedrooms and bathroom later this year.

These rooms have been needing done for years as we were given a week to move house here, even paying double rent to extend it to three weeks we just barely slapped pain on top of the pre-existing wallpaper. So no plans of moving to a flat level house.

Only other thing she said was that I try to apply for planning permission to the council, it's their house, to install this shower. Planning permission does not come cheap and can take over a year to obtain if you can. She didn't know that it would be successful.

So I'm feeling quite gutted, it was the shower which was my main problem. I need it not only for the obvious but to do my physiotherapy correctly, many of the exercises I have to do are better done when in running water. Both for impact but also for help with the pain associated with the exercises. Doing them in the shower helps you do them more affectively.

So dont know what to do now and feeling so gutted, after months of not being able to clean myself properly I finally thought I was on the way to having that fixed so I can once again shower/bathe properly but am further back as we don't know where to look next.

Can we successfully get permission, if so what will it cost us to get it and how long will it take. Will there be added expenses on us to do so.

Is is worth trying, because we don't want to go through the expense of applying for permission including the architect we would have to pay to do the survey for us that we must have, if it's not likely that we will get the permission our limited money is best spent on purchasing the extras we do need and can get that on a long shot that would loose us it all.

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