[Lucydog]

Over the last 6 months I have been getting worse in terms of function and SCI. Take today for instance, I was out with my boss and he asked me if I wanted to adjust the car seat which I did. I didnt have enough back strength just to lean back, I had to push on the dashboard with my arms to be able to sit further back. 6 months ago I would have been able to do this. Similarly I recently managed to dig a big hole in my leg with my keys, I used to have enough residual feeling to avoid this sort of thing. My toes seem to be curling under on my left foot, and Im finding it increasingly difficult to flip up even very small steps because I just dont seem to have the strength or movement I had in my lower back only a year back. My balance is pretty crap too.


I used to be able to walk a bit with braces and something to hold onto now I just go SPLAT on the floor. oh and my bladder has given up any function it ever once had. Dont even ask about bowels!

So Im feeling fed up because we are always told to look out for improvements post injury, but no one says we might get worse. What do you all think? maybe its just me.

This post has been edited by Lucydog: 21 August 2006 - 06:11 PM

[crash]

Lucydog,

You are talking about something that I am not sure many people want to deal with. Unless there is a specific health reason for why you are experiencing these changes, I wonder if it is just aging with an Sci? I know that I don't like to think about the fact that when I get older it will get even harder for me to manage my own life. Maybe its because once you have an sci you feel like ok, this is it, it shouldn't get any harder. But we are going to deteriorate just like everybody else!

I hope that you will start feeling better. From your picture it doesn't look like you are that old. Have you told your doctor about these new happenings?

[Lucydog]

crash, on Aug 21 2006, 07:19 PM, said:

Lucydog,

You are talking about something that I am not sure many people want to deal with. Unless there is a specific health reason for why you are experiencing these changes, I wonder if it is just aging with an Sci? I know that I don't like to think about the fact that when I get older it will get even harder for me to manage my own life. Maybe its because once you have an sci you feel like ok, this is it, it shouldn't get any harder. But we are going to deteriorate just like everybody else!

I hope that you will start feeling better. From your picture it doesn't look like you are that old. Have you told your doctor about these new happenings?

Yep, the hospitals in the north of England have revolving doors for me, and as for seeing my GP, she runs up to me in the street to ask me how I am! bit worrying that! Anyway Im not that old!!....early 30s and I have only been living with this for a few years. I know improvements can occur so I guess it stands to reason we can get worse as well.

[Lee]

Lucy, mines has been getting worse over a few years. 5 years ago i started work, walked with 1 crutch if i had to often with none. Now struggle with 2 crutches. Because of work and lack of mobilty that i require, because i wanted to work (which is another story which i get angry about being labaled a lazt t"a% not working althoug i have done voluntry work since left school, i will post some day im getting a anoyyed again) i ended up walking very badly on 2 crutches and although had problems for years am only accepting now that i am disabled and need extra help. Its been extreemly hard for me since my passion is vehicles, old cars, re buliding and off roading which are all physical sports which need quite good mobility or really good understanding friends which i aint. I will keep at it till the day i die but will not give in just adjusting life to make it easier, lol.

cheers lee

[dom]

hiya lucy! i seem to remember you taking on that new job a while ago,are you sure you're not overdoing it?
we all thought when we were younger that a 30yr old was light years away,but time is crafty as well as fast and we don't realise how it catches us when we are least aware
now i think of 60 as being old but i'm positive [if and when] i reach that age that i'll think otherwise
today i was reading my monthly copy of 'forward' magazine and in it is all about 'empowering people back to work etc but are these government officials and employment advisors and their ilk really empathetic to our daily needs and problems,well,they can't be due to the very physiology they enjoy and we are lacking.
an old and true saying springs to mind 'unless you have walked a mile in my shoes you can't understand me ' well i could change that to wheeled
i have good days and bad ones,sometimes on loo for hours etc and to fit this round a job is difficult as it states in the mag the government want to get people back to work and are training new breeds of advisors for the task but what about the retraining that is necessary for the newly-injured who may have had strenuous jobs pre injury,i think there will be a dearth of this

[Dancingdolphin]

Lucydog, on Aug 21 2006, 06:44 PM, said:

Over the last 6 months I have been getting worse in terms of function and SCI. Take today for instance, I was out with my boss and he asked me if I wanted to adjust the car seat which I did. I didnt have enough back strength just to lean back, I had to push on the dashboard with my arms to be able to sit further back. 6 months ago I would have been able to do this. Similarly I recently managed to dig a big hole in my leg with my keys, I used to have enough residual feeling to avoid this sort of thing. My toes seem to be curling under on my left foot, and Im finding it increasingly difficult to flip up even very small steps because I just dont seem to have the strength or movement I had in my lower back only a year back. My balance is pretty crap too.


I used to be able to walk a bit with braces and something to hold onto now I just go SPLAT on the floor. oh and my bladder has given up any function it ever once had. Dont even ask about bowels!

So Im feeling fed up because we are always told to look out for improvements post injury, but no one says we might get worse. What do you all think? maybe its just me.

Hi honey

Hope this is just a temporary stage of setbacks......I've had days when I feel like I'm fallling apart at the seams then things seem better and settle down after a few weeks....

Hard to stay positive all the time, I know..but you always seem such a positive active person I really hope your problems settle down soon.

Sorry no advice but I know how u feel.....

hugs

Karen

[russ1]

Lucy

Things are always difficult with an incomplete injury but serious loss of function is something that need a close eye kept on it. I really hope that your symptoms are due to fatigue or something similar but a possible cause for real loss of function post SCI is a syrinx (scar tissue in the spinal cord) - it's something you should get checked out if you are concerned about loss of function, you'll probably need to see your consultant and he'll want to do an MRI. It's not common and fatigue is more than likely the actual cause but it's something you should probably get checked out.

There are things that can be done if it is so you don't need to worry too much but you should get this checked out at the earliest opportunity.

[juls]

i have a cyst on my spine where my injury occured and my Dr keeps a close eye on it because it can grow..if it does i may lose more movement but so far it's staying put, i agree with Russ1, you should see your Dr..it probably isn't anything but it can't hurt to get checked out anyway

[Avocado Baby]

Hi Lucy,

I don't really have any advice for you either unfortunately. Just to say that I've been experiencing this over the last few years and it is extremely difficult to deal with. Although you don't want to give into itn and stop doing things, sometimes you need to adjust the way you live to make things easier for you when your function does change. It's a difficult situation.

Anyway...I hope you're doing ok. We're all here if you need us

[Lucydog]

Im sure you will all be thrilled to know that I have so many hospital appointments set up for next month, that I think I must be single handedly responsible for the NHS defcit. Ahhh so many hospitals, so little time........

This post has been edited by Lucydog: 22 August 2006 - 10:03 PM