Friday, March 30, 2012
Crosing the line...........
I'm afraid to say that I haven't been able to regain that little bit of ability I had a few months back. I've crossed that line. The line that I knew was coming down the track, the line I didn't want to cross. Life as I know it will never be the same again. Granted as someone said to me today "it's not the end of the world. That is very true and I agree with that, but it sure feels like it at the moment. In time I'm sure I'll adjust, like I have done so before. But for the time being I feel like I'm losing my independence, dignity, privacy, sense of style and control, not only of myself but also control of when and what I want to do. It just feels like this is a big step to adjust to and sadly it's not the last. In fact, it's just the start of many more difficult steps I'm gong to need to adjust to, each step will probability be more difficult.
I think, that's why it's cutting so deep, deeper than I care to admit. But what's annoying me more, is the people around me. You would think they would be more supportive, understanding of how confronting and difficult this is to get through. Don't get me wrong they care and everything but they just don't get it, they have no clue on what's going on emotionally. It's probability because I've done such a good job in the passed of holding it together that they can't see the wood for the trees, as it where. I'm not sure how to explain it to them, I'm not sure that I should even need to explain it...they should be able to see it for themselves. I sometimes wonder who has the disability, pardon the pun. I should know better, it's never been there...I don't know why I expected that this time it would be any different from time before.
But anyway enough feeling sorry for myself. At this stage I'm waiting to get some person assistance with getting up in the morning and transferring in and out of my chair. Although I'm able to transfer with help, it is difficult not only for me but for the person who's helping me. Which at the moment is my dad, he is the strongest, more able to support me. Unfortunately this is unsatisfactory for the long term, for him and for me. So, I'm working on getting some outside help to come in the mornings then again at night, this at first seamed straight forward enough in the beginning. But not so, I have a water bed for over 30 odd years or so, it has protected me from pressure sores so far. The care worker's are not happy with the height of my bed and will only help if I'm hoisted. Which I do understand and is fair enough, they don't want to injure their backs trying to help me. This is the difficult part for me, I may have to give up my water bed and it is something that has worked for me, it accommodates my twisted spine. Even the specialized air mattress that are available don't measure up to a water bed. A water bed is also heated, it keeps me nice and cosy in winter, helps with the stiffness.
So they want me to get an electric bed, Hi-Lo bed so it can be raised to the level of the carers. Unfortunately the electric bed has no heating and you can't use an electric blanket, it seams to me I'm giving up a lot. Not only am I giving up my independence but my comfort as well, I get really cold in winter, I stiffen up like a board. There's also not transferring and bearing weight on my legs, I'm in danger of needing a cather, which in turn will bring extra dramas and a lot maintenance.
However there maybe a glimmer of hope, not happy with the idea of giving up my water bed, I wondered if it were possible to place my soft-sided water bed bladder on the Hi-Lo bed. I did some research, it can be done but the bed needs to be able to support the weight of the water. What usually happens is, my OT put in my application for a Hi-Lo bed to (Enable NSW, Aids and Equipment Program) that is funded by the local government. I then have to trail a bed with a few different mattress and then work out which is more suitable for my needs. The beds they supply have a capacity to hold 100 to 150kg's, a single water bed weights over 200kgs. They do however have beds for obese people that support 300kgs, so if my OT can justify why I should have that bed, there might be away for me to keep my water bed and keep everyone happy. It's a big ask, where talking about $2,000 bed to a $4,000 we've going to try, We have nothing to loose. I also have trailed a few hoists, one a standing hoist the other a portable hoist. They decided that the portable one was best. Now we have to wait to see Enable will accept the request...
here is a link for Enable: Enable Health.nsw.gov