Finally after 5 months in hospital I might just be going home.
Obviously I am disappointed that the doctors have never been able to figure out the cause of my paralysis, but I was told from day one that the inflammation in my spinal cord was so pronounced that any damage would be permanent.
But aside from the medical angle, it will be great to be out of a hospital environment and into the real world.
Jay and I now have a one bedroom flat with an adapted bathroom. It is really tiny but the good thing is that the kitchen has been lowered so I can do the cooking and there is a decent ramp leading up to the front door. The flipside is that it is filthy, has no flooring and the kitchen has nothing in it so there is a load of work to be done before we can move in. Jay's folks have volunteered to help us get set up and hopefully can take some of the pressure off Jay as she is working up until xmas.
My wheelchair is in the process of being delivered and my GP is writing up my prescriptions for the 15 odd drugs I take daily and for all of my catheters and that kind of stuff. It is going to cost a fortune but I have already started harassing the people here to get me a prescription exemption.
The only real problem I have at the moment (ha ha - apart from being paralysed) is that I suffer from really bad spasms and in the mornings I simply cannot move and have to be strectched into shape before I can get up. Hopefully an increase in drugs will make my legs get 'floppy' and mean that I can get in and out of bed and the car without fighting my spasms so much.
So hopefully we will be in situ at our new spot before xmas and I will have to get used to being in a wheelchair in the real world. London is pretty crap to wheel around in as the pavements are all at an angle and only the Jubilee line is wheelchair accesible so I need to get a vehicle organised pretty quickly. The chair my local wheelchair service is giving me is basic and pretty heavy so I need to but my own chair pretty soon. Would you believe a basic lightweight chair costs £2500? You can buy a decent car for that price.
But it is all looking pretty good to be fair and I can't wait to get out of hospital and away from some of the moaning patients I share a bay with. There is nothing as galling as hearing a fellow 'inmate' complaining all day about how hard the physios are pushing him when he can walk, albeit with a slight limp when some of us will can't even use our stomachs to sit up straight.
I volunteered to give him a head injury to even things up and he has started to keep quiet recently.
My mate Stuart, who cannot use his arms and legs and is on a ventilator for life as a result of a rugby injury, hit the nail on the head when he said that is always the people with the comparitively more minor injuries and disabilities who complain the most.
So whilst my stay at Stanmore has been beneficial and the staff have been excellent my fellow patients have begun to piss me off big time, which is a sign that I have been here for too long.
I will let you all know what is happening when I leave.
Thanks for all of the messages and support as usual.
Bruce
2 comments:
t soon...hospital is soul destroying and the sooner you have some "quiet" time with Jay, the better you will be.
Wish there was something we could do - Leigh and co keep us posted...
Lots of love to you - Jay sounds incredible!
Hey Bruce and Jay
Just want you to know you are continuously in our thoughts and prayers! I realised none of this can be easy and I understand completely! 22 years ago I went through the same thing with my Dad!! He was 40 at the time and a very active sporty man! You sound like you both have a very positive outlook on life and as hard as it seems, that is the only way forward. In a strange sort of way, I wouldn't be the person I am today if my Dad had not been disabled! I learnt soooo much from him, his attitude and his incredible personality. I only wish that my children had the chance to meet him and learn that there is always someone else out there who is suffering far more than us! The road ahead is a long one but you are certainly not alone! It is great to read your blog and hear the latest - great too to be in the know as far as the drugs go and terminology that you are using! Please feel free to ask questions and contact if ever you need to. I hope that I will be able to help out in some way! Jay, you are a pillar of strength!
Much love Jubes and Andy
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