[jane]

Hi

1 had a benign tumor removed from my spinal cord c4/c5 in September 05 and now apparently have an incomplete sci. I am having physio, hydro and ot and can walk aruong short distances with crutches, and drive my car. My left hand is very weak too But i am permantly tired - exhausted most of the time. Is this common? I don't know whether i am doing too much, but if i just stop and sit about i will go mad. My gp said i should ask the question hre so i am.


Jane

[Joed]

Hi Jane...

My SCI has left me with limited energies too. I feel like I'm a slow-leaking tire, and I have to time things just right in order to complete a task. My biggest fear is being somewhere, losing steam and not being able to make it back to my car.

My main injury was in '03, and I'm still building stamina...it's just very slow.

It helps to start thinking in terms of energy conservation...from the moment you get up, try and plan just how you're going to best use the finite amount of energy you have that day. It's hard to change your habits, but for me, some things just have to wait if there's something else more important that I want to expend my energies on later on in the day. For instance, I try not to plan any major task on my shower day, as it just sucks the life right out of me and I'm pretty much useless for about 4-6 hours afterward.

Your therapy is also taking up more energy than you're probably aware of. Be kind to yourself on those days, and learn to delegate some of the tasks you have at home, if possible. And your body is still using a tremendous amount of energy to heal...it's easy to forget that, as it goes on unseen by us, but it does take a lot out of you.

As you build strength and stamina, things will slowly start to become more do-able. Try not to get discouraged, keeping in mind that it is a slow walk back.

[jane]

Thanks. I do feel tireder on my physio days, and completely wiped out on the day after i have worked.

trouble is i have 2 kids and have to run them places, but generally they are good and help me at home.

Jane

[Joed]

I have one child in kindergarten...and I know if not for that, there would be many days that I would simply not get up at all. On my 'Frankenstein mornings', it's all I can do to bring myself into a sitting position...and just the thought of getting dressed, donning my brace and driving him to school is overwhelming. On those days I go into an auto-pilot mode and just drudge through it somehow....counting every mile until I can get back home and lie down.

Jane...do you use a wheelchair at home? I fought the idea for the longest time, but it's the best thing I've done since my injury, as far as being able to function more fully in my life. Tasks are not so draining on my energies, and I'm less wiped out when it's time to hobble out to the car and perform taxi service, shop, etc. I can now get so much more done at home, and the guilt of not being able to contribute like I used to is lessened. Most days I feel pretty accomplished in what I've been able to do. I attribute that to using my w/c.

I'm glad your kids are a big help to you. It will benefit them in the long run too. But if you're like me, there is some slight guilt in having to expect more from them. We're mothers...that's what we do. My son's teacher has commented on how my son is very attentive to helping others in his class...he can recognize when help is needed and is always the first one to offer it. I'm proud of him, but I try to work hard at giving him opportunities to just be a kid too. Ah, the guilt!

[jane]

I know what you mean about 'frankeinstein mornings'. trouble is they are most mornings.

I don't use my wheelchair at home, i try not to use it much, mainly becausei struggle to push myself in it as my left hand is weak (an i am quite heavy) The chair is a borrowed one from the red cross and doesn't move well. I am waiting for one from the wheelchir services.

And the guilt is huge. I miss being as active as i was before my surgery too.

off to bed now (hopefully to sleep)

Jane

[Joed]

I used a manual w/c at first, but found it difficult to get things done. Pulling a cannister vacuum cleaner, putting away stacks of folded clothes, dishes...all these tasks were made incredibly easier with a motorized w/c. I can fly around here and get a lot done on a good day...pedestrians do not have right of way when I'm in the 'get 'er done' mode.

My health insurance would not fund a w/c for me, so my state Vocatinal Rehabilitation Services qualified me for services as a caretaker of a child. It has made a huge difference in my life and allowed me the extra 'ooomph' to get out and be involved with my son's activities.

I think I've found a good balance. I've no ramps from my house, so I rarely take the w/c outside of my home...only once in two years. For me, that's good because it forces me to put my brace on and walk on a daily basis. Pain has a way of making us avoid things, and I know it'd be too easy to become dependent on the w/c if I could take it outside or in my vehicle. Not having it with me is limiting sometimes...I have to choose carefully what I can do. Sometimes I'm wrong...like waiting in the "To See Santa" line at the mall.

[jane]

Well so far this weekend i have spent lots of time in bed catching up on sleep.

using a chair in my house just wouldn't work as it isn't the easiest to manover abou in. But i guess i could use it more if i am out.

I am braving the train on tuesday as i have to go to a meeting in london so am taking my chair and have booked seats etc. Bit daunting as i am on my own (someone meeting me at the station in london.)

Anyone got any tips for travling all i have heard so far are horror stories.

JAne

[Lucydog]

Jane

Really dont feel guilty about using your chair at home, its there to make life easier. You dont have to struggle on you know. Have you thought about going on an 'Expert Patient' course run by the NHS? My husband runs them in Northumberland and Cumbria and they are very useful for anybody with a long term condition. E mail me if you want to know more.

Try to concentrate on what you can do, not what you cant, and see if you can get a chair more suited to your needs. As for travelling, just be bolshy if needs be after all you are the PAYING customer and if using the train you are probably paying a fortune. On no account let it slip you can walk ok, make the staff do their job. It sounds harsh but you really have to be tough on this otherwise youll be walking down the platform carrying your own luggage

As I tend to think, this is a life less ordinary but it will get better and easier with practice, take care of yourself.

[jane]

Well it all went okay - help was there when it was supposed to be and i managed to get home with no probs either.

i even left early as i was getting tired which is something new for me to give in to tiredness.

[kanga2433]

Tiredness or fatigue is one of my main problems so I am with the previous posters on this. Having a demyeinating condition, like MS, fatigue seems to be part and parcel of the problems that stay. I carried on wporking for some years after being paralysied, but eventually it became too much. I spent a year when I could manage an hour or to before having to fall into bed so on medical advice I retirted from my job and jhave been a househusband since.

I find it is different every day, but I have learned to pace myself so i can last the wole day and i was lucky to have retured while my children were reasonably young so spent the time on taking to school and entertaining in the holidays. Oh, and yes I do like the shopping and cooking bit. With my wife on Weightwatchers I enjoy the daily challenge of producing meals with less WW points in them.

Ok, now it's time for another coffee.....