Monday, February 26, 2007

It's not nice being this handicapped

I am trying to stay positive but its hard when even going to the toilet is a huge challenge as both legs are affected now so have not got the left leg to support me so once I get up out of the wheelchair at the door I have to somehow sway around holding onto the handholds to give me the leverage to manoeuvre my feet in the right position in front of the toilet and quickly take my trousers/knickers off and hope to aim accurately and collapse onto the toilet. and then its a huge effort to pee or poo both need leg muscles to help the action so its hard work and takes ages.

And sadly bedtime is horrible for me and not a place to go for comfort as lying down produces awful spasms which are painful. I then lie on my back unable to move much apart from my head and arms and they are getting abit spastic too. having a real problem with pillows can't find anything that supports my neck properly(I have a neck hernia)but is nice and soft and does not feel like a paving stone under my head and does not make me sweat. I get overheated at night and can't turn over to cool off as you normally do and then I wake and Richie has to get me up. must try and find a lighter duvet as the one we have is too heavy, can't have the weight but need the warmth.

What I really hate is not being able to get in and out of bed, having to wake Richie at least three times at night. so you see its not just feeling a great bereavement but being faced with alot of problems due to getting less and less mobile. have to get the exercise machine as quickly as possible as it really does help keep the legs exercised and that's the only way for me to keep the circulation going and stops my paralysed legs from swelling up and will keep bowel and bladder regular for as long as possible.

How it feels to have MS is the feeling of half of me, my legs being “dead” but still being there, like my right leg I don't feel it anymore and the left is getting like that fast, it feels really scary to have bits of your body pack up like my ability to walk but also the knock on effect of not being able to go easily to the toilet, things that came natural like bowel/bladder movements are hard work and alot of work with few muscles left and the joy of getting shit on my hands as I have no feeling in my fingers. and the additional joy of if all else fails having to help the last bit out of my bum with a finger that feels nothing. its not nice being this disabled. now the fingers lost their sensation life has become more difficult as everything takes ages and I constantly drop things and can't pick up things or hold even a cup of tea for more than a quick gulp.

Really sad about the fingers as it makes the nice things like putting on my lovely earring or other jewellery usually impossible for me and I mostly can't do my finger/toenails as my fingers not only don't have any feeling but also no strength. and then there is shower time when I have to carry out some awkward manoeuvres in order to get over and onto my shower chair that's been installed on the wall under the shower.

No its not nice being this handicapped and in this situation living here where nothing is set up for me where I can do so little and am a virtual prisoner in the flat, it is very hard to move on.

By the way there was no houses for us last Thursday so its waiting for Thursday next week for another chance.
hope there is a flat for us next time, and there will be if they put some new flats on the site.

Wish I could find something that backs up the theory that the fall could have triggered the MS as this often is the case with MS. the FNV lawyers are still deciding what if anything they can do or rather demand on my behalf.

Every little bit helps

I been waiting since august 2006 to get my own wheelchair and other aids I need to help me live as independent a life as possible.

So far the red tape has been horrible, instead of assessing my needs they only want to give me the cheapest chair yet I need it permanently and all the time.

I have been refused a invalid car too expensive even though it would be very useful for me plus wheelchair.

I have been refused a handbike even though it and the motomed are the only ways I can exercise my paralysed legs, again too expensive.

I appealed the decision not to give me a handbike and had a hearing about it last week. I prepared well for it producing a small document for both members of the panel and expected them to be equally professional, both were totally disinterested and accepted the document supporting my case then hardly bothered to listen to my additional arguments and informed me right away that the decison was still no. So much for a fair hearing where all evidence gets looked at and a balanced decison is made. No it was a pro forma hearing with an immediate pro
forma decison.

I can have a bed if I accept a hospital single bed which excludes sleeping with a partner, obviously the chronically ill don't need intimacy.

I can't wait for burocracy to help me, can't afford to let anymore time go by have to start living and exercising and keeping my body as fit as possible.

To do this I need to get the following:

A good bed that is electrically operated so I can get up and go to bed independently without MD's help.

A handbike so I can exercise top of my body, its also pretty good for going for walks with the dogs. One with a help motor for the moments when my strength runs out.

A motomed to exercise my legs, its got a help motor which exercises my legs when I can't pedal myself. A very useful machine and will keep me healthy and stop problems with circulation and other secondary effects from the paralysis.

And a good wheelchair.

These items cost heaps of money, I dare not wait until we have saved up the money as by then my muscles will have gone west so I need to act now.

Got so desperate that I actually sent an email out to all my friends asking for contributions as every little bit helps. I hate to ask for help and especially hate asking for money but do need all the help to remain independent.