I don't remember this blog at all, it shows how my health and life has changed so much and what gets lost in the tussle.
I have a few blogger or rather blogspot - same thing really - blogs. One on writing and two on disabilities. These are the three sides of my life blogs. My love of writing, and my life as a disabled person.
The baby boy mentioned in posts on this blog is now an almost 4 year old disgustingly healthy and active little boy. At the summer holidays he will just be finishing his first year at nursery school. My eldest nephew moves up to secondary school after the summer holidays.
I am now walking - or rather crawling - around on two crutches. My specialist at the RA clinic has changed, the one I didn't like and wasn't the least interested in my records or what I said has retired I reckon. I have been seeing a lovely doctor for the past three years. I am currently undergoing physio. Yes again! As my RA has moved into my shoulders as well. My physio is hoping to discharge me soon with my new shoulder exercises and the shoulder pulley he gave me a month back.
I am also attending an Occupational Therapist who to be quite frank isn't all there, she seems to base her vision of my future in rose colour glasses terms. A good example? My lower limbs have degenerated so badly, as well as my hips/back and my shoulders that both her and OT at the OT Department (council) say I need a walk in shower as I can't manage into/over the bath even with another person lifting me.
But the OT says that because my semi house has an upstairs bath they don't install them. The OT's from the council's only idea was to have my parents ask to be rehoused in a flat where they would then put in the shower I need. Not likely as my parents had to move here in 2001/2 because of both my disability and my father's.
The OT at the hospital says this is because I might - and I stress might - someday degenerate so badly that I can no longer manage the internal stairs and if that happens and I have to move then it's a waste of money for them to put in the shower. So they don't.
At least that's how she explained it to me. Her bright idea? Was for me to move into a flat by myself and get the walk in shower.
So it would cheaper for the council to rehouse alone and have to give me at least housing benefit and council tax benefit as my only income is disability benefits and I can't afford to rent a council house let alone pay expenses and buy those things. What do you call them? Oh yeah, food!!
Also I would probably need to have a carer come in and help me as my Mother acts as my carer, without any financial help i.e. carer's allowance, and if they move me to this mythical flat she doesn't drive so she couldn't be expected to run across to my flat to help me several times a day. Or is she?
Anyway I might not be an accountant or similar but wouldn't it cost the council more money to rehouse me independently and make me eligible for more benefits than to install the shower? Especially as I would be getting the shower anyway!!
That and given her attitude towards my increased pain and majorly decreased sleep I have lost all confidence in her ability to help me as she promised she would. One of her biggest worries when she first assessed me is that I had to rely on my elderly mother to help me with the basic daily tasks including hygiene. She wanted to help me become functionally independent so I wouldn't need to rely on her to physically help me esp. in regards to person hygiene.
When I said I didn't think 'it was a good idea' to me to ask for my own flat from the council as she phrased it she wanted me to get instead a plastic swivel seat to swing me into/out of the bath to use the current elderly and less than reliable shower we are using.
When I said this wouldn't do me any good because I can't physically lift my degenerated lower limbs into the bath and forget me using my arms to swing me as 'hello' I have very bad RA in both shoulders now. But her answer, 'Oh but your mother can lift your limbs into the bath and swing the seat around for you'.
My thought, 'so much for making me functionally independent if I have to rely on my 70 year old mother to physically lift me up into the seat (it's high, it's a blank over the bath with the swivel attached and the seat on top) as I couldn't physically lift myself up into it as it's a big heavy and high thing. Then she would have to physically lift each of my legs - either together or individually - into the bath and then rotate the seat to get me under the shower head.
As due to safety you can't wait till I'm under the shower to switch it on due to surges in both hot and cold water until it hits the right temp that it's set at, she would have to lift me into the flowing water what she couldn't do without soaking herself. She would then have to wait for me to finish before reversing this all. Only not only is she is soaking wet clothes, why get two sets of clothes soaked?, but I will be slippery with the water now and common sense says it will be harder for me to get down out of this high chair for want of a better word.
That said the only thing I said to her is even if my mother is willing to do this, and she is, what happens when she's not able to help due to illness. Or if she hurts herself lifting me? Or heaven forbid she isn't around?
The expense of installing this seat could be around £300 if the prices in the brochure she showed me the seat in is anything to go on, and as my mother is turning 70 this year, how long would this seat be usable for me?
It would be a complete waste if it only did me for a few months or a couple of years before I'm back where I am now. Washing myself with a bowl of water and a cloth by hand while sitting on the toilet.
All right I'm getting depressed again so I'm off as my hands are really beginning to hurt me. Oh, didn't I mention before she also diagnosed me with Carpal Tunnel Syndrome in my wrists/hands as well as my RA.
