Sunday, 30 October 2011

Giant step for me

Well its been a roller coaster of a time recently.

Not sure if it has been mentioned earlier but my sister was taken in for an operation to remove a tumor from her brain, thankfully non cancerous, on top of that my eldest son has taken ill with problems with his kidneys, blood cells and low potassium.  Now this could be nothing just three separate things, but they could also be underlying problems of something a lot more serious so we are keeping our fingers crossed on that one!

On the back of this I have been to the limb center at the Freeman hospital for further fittings.  The liners are made of a silicone material and very strange to put on but once on feel like a second skin, you don't notice its on.
Went recently to try the finished product on with very disappointing results!! Tried to stand from the wheelchair and couldn't even put enough weight through the stumps to get out of the chair. I felt the fear creep over me, when after a further 3 attempts at getting out of the  wheelchair, I was  greeted with pain and failure.
By this point I was so upset and scared that my worst fears had came true and it had all been for nothing and i would not be able to wear the legs and walk.  Julie took me through to another room and we tried again from a raised seat and although I could stand from this I was unable to take much weight through the stumps and tried hard to take  few steps.  The pain was agony!! Julie told me to leave it as my ambulance was there and I refused. So I let the ambulance leave and for the next hour tried very hard to put weight through the stumps and to take a few steps. Eventually i manged to take a few steps, but only by taking 70% of the weight through my arms . As i spent the next 3 hours waiting for another ambulance to take me home and in immense pain I was left wondering if I would walk and what would happen.

In the mean time I have been back to work now for 2 weeks .  At first I felt like a fish out of water and very self conscious but my colleagues and friends have been brilliant and I am glad to be back , the only down side is trying to get help from the government.  In order to go to work I need to use a wheelchair adapted taxi otherwise I would not be able to get in to work. The government will provide this as long as I make a contribution, which is fair enough.  But this is where it stops being fair. My contribution is £130 a month, the extra I get for going back to work is £100 a month leaving a deficit for me of £30.So not only am i currently working for nothing but I am paying for the pleasure to go to work for nothing!  Just  another way the government fails the people,yet they are targeting disabled people on incapacity and DLA forcing them into work, punishing people on low incomes who are trying to make things better and provide for their families while people who are scamming the system, who don't want to work and are happy thinking they have right to chose not to work and be paid for it, get away scott free !!!!

Sorry......rant over...promise.


So this week went back to hospital expecting the worst.  Put the liners on, sat on the raised bed and put on the legs and my mind started racing!!! I reliased that if I thought about it too much it would be as bad as the last time so, putting it out of my mind just took a leap of faith (metaphorically) and went for it .  Pushing myself as much as I could I stood taking only 30% of the weight through my arms and walked! I got half way down the bars and started to feel my legs turn to jelly and my arms shake but was determined to make it to the end .  The bars seem to stretch on forever but got there but reliased that I had to turn around to go back !!! that was scary but made it and walked back although half way back I did think I was going to faint! Again I decided to push myself to the limits and did that another 2 times ! each time it got easier and in the end I was only putting about 5% of my weight through my arms and I was walking without faltering as much. So I was allowed to bring my legs home with me but not allowed to use them until I have the say so from physio but I dont mind .
I know I have a long way to go yet  and a lot of hard work ahead of me but it will be worth it .  I am looking at having the sockets spray painted and get some funky socks to cover the foot and Voila! a totally jen leg !

Now which way to the bar and who's coming clubbing.................?

Wednesday, 5 October 2011

THE WAITING GAME

Not been sleeping so well lately.  Stumps have started to ache and burn as well as the leg muscles jumping, but that is not the only thing that is concerning me at the moment....

Went for my first fittings last week.  The liners are like a second skin, they are how i would imagine a wet suite would feel and fit. Putting the first one on was fine just have to make sure the blue hard base with the screw on it is completely flat against my stump, otherwise if there is a pocket of air it could cause a blister by sucking one out ! ouch!!!!
However went to put the second one on and because we had to push the disc on to the end of the stump the roll the liner up, as soon as we started doing this, i nearly jumped out of my chair in pain.  The agony was unbearable but gritted my teeth and told the prosthetic fitter that every thing was ok, I was too scared that it would delay things again.  Now an sitting here worried that this might be a sign of problems to come. To make matters worse as you may remember just before i went in for the amputation I found out by accident that i had osteoarthritis in both hips,knees and in my back? well things are getting steadily worse.
Now it doesn't matter how long am sitting for , where am sitting, laying down or if am laying on my back or sides am in so much pain...constantly.  Not just the areas mentioned above it has now spread to my shoulders, neck, elbows, wrists and fingers.

I am scared and am not afraid to admit it either. As this condition gets steadily worse it means that  pain killers are still going to be needed and my mobility will still be effected, so everything i have put myself through and put my family through is still going to be for nothing!!!!
What is even more frightening is if the initial pain of putting the liner on ,or worse still, being able to weight bear through the prosthetic on that side, is not possible, well that's the end to my dreams of being able to keep mobile for the kids and myself and  for once in my life to say good bye to pain, pain killers and being different.

Its also the end to my life long dream of being able to wear normal shoes like everyone else, to be able to buy any kind of shoe..hell to just be able to buy shoes!!
Looks life hasn't finished throwing me curved balls yet.

I think the light at the end of my tunnel just went out.........