h2g2 The Hitchhiker's Guide to the Galaxy: Earth Edition

I'll sleep well tonight. I've done more things this afternoon and evening by way of fetching and carrying and putting stuff away than I had all week before that.

I loves me wheelchair. When I get to my destination I can stand up and do things, and when I'm on my way, I can carry heaps of stuff in a basket in my lap.

Fear of falling has been the main phobia of late. Yesterday afternoon I nearly fell when I was carrying a small meal back to the living area. A piece of quesadilla began to slide off the plate and in fumbling to put it back I began to pitch forward. I was lucky that the dining table wasn't far ahead and although salsa went all over the place neither I nor my meal hit the floor.

I had fallen earlier in the day, when travelling about fifteen feet to put a bottle of milk back in the fridge. Somehow one foot didn't travel forward on command and I went down gently, almost absentmindedly. Although unhurt I was shaken emotionally and, once I regained the safety of my office chair (after lying next to it for a while until my knees would obey commands) I didn't leave it for an hour or so.

It's a feedback loop. It's constantly on my mind. I get out of the car and look around. How many steps in the open to my destination with nothing to catch hold of if I lose my balance? Where is the nearest chair in case I lose signal in my legs? And latterly, this fear has pervaded the house where I had till recently felt safe. WhatifIfall whatifIfall whatifIfall is the mantra in my head as I try to assess the energy levels in my legs and whether I can carry more than one item in my hand on the way to or from the kitchen.

I sit on the edge of my bed after post-shower ablutions, waiting up to half an hour for that indescribable sensation to return, the sensation that says 'If you stand up you'll stay up.' Only then do I have the courage to travel about 30 feet out of the bedroom and over to the chair at the dining table. I hope I've remembered to put a bottle of water at my desk, I think, because I don't know how I can double back into the kitchen, carrying water all the way to the office area.

I knew the wheelchair was the cure for this fear, but what I didn't expect was how much more exercise I would be doing, and how much stronger that exercise would make my legs feel. Well, maybe the office chair sculling helps, too. And the chiropractor is working to restore lost sensation, which is likely to improve my sense of balance.

Sometime in the next couple of weeks I will go to Albuquerque and put myself in the hands of neurosurgeons (and students). I don't look forward to the conduction tests they may decide to perform, I don't look forward to more MRIs as they try to determine the cause of the syrinx, and I don't want to be away from home and safety. But now I have a wheelchair to get me through hotel lobbies and air terminals and all those places that take the ability to walk for granted.

And who knows, maybe I'll be just a bit stronger when I am required to clamber on and off those examining tables.

Just out of curiousity - what kind of wheelchair is it? I've always thought that the light-weight sporty models look easier to manu... mano... move around in.

I was *very* impressed when I once saw a man in such a wheelchair hop up the stairs grabbing the rail with one hand and a wheel with the other, going up faster than I was walking.

Sounds like it's more than worth its weight in gold, Lil.

Lil,
I hadn't been around for ever-so-long, and I've missed events leading up to this point. Regardless, I'll keep your situation in my thoughts and prayers. You deserve to be freed from this impediment. You're such a vital individual and you've given so much to the rest of us, it's the least I can do to petition for your recovery to full health and wholeness.
Bless you,
TJW

manythingshavehappenedB4ibecameawareofthem

The fact that the chair is letting you regain strength in your legs is just wonderful. What a relief.

I noticed the difference as soon as I woke up. First, there was the sport-achiness, how your muscles feel when you've exercised after a layoff.

Then there was the ease with which I stood up out of the chair to fetch things from high places. No muscle doubt.

Titania, this is pretty much what mine looks like:
http://www.jchomemedical.com/images/wheelchair.jpg
It's a light model, collapsible (although I haven't tried getting it in and out of a car yet). The frame isn't identical. And there's no way I'm going to get into Xtreme Wheelchair stuff!

I'm glad to hear that the chair is working for you, and I hope you'll keep on gaining strength (and confidence) as you use it. If nothing else, you've got a seat handy if you feel the legs going, to prevent a fall.

Is the chair narrow enough to get through the doors in your house, without collisions? When I had to use one a few years ago, I had to use a walker to get into the bathroom -- the chair wouldn't fit through the door!

Yes, it fits through every interior door. I have to move a piece of furniture to get it to the courtyard door, which is the only one I'll use if I'm "riding", but I can tell it will fit that one as well.

The chiefest challenge has been the uneven floor. I can actually coast from the office to the kitchen area cos it's downhill, but it's a steep haul into the bedroom or back to the office area.

Dear Lil,

Welcome to the Wheelchair Club.!! I have been in one for over ten years and it has given me the most wonderful liberty and ability to get around. I had to give up driving nearly three years ago, but niow I do not mind.

I am not sure what you have, but if you can, do remove the footplates. I did this and the result is that I can get ever so much exercise by properlling myself along but just sitting in my wheelchair. I call it my snail shell. !!

I visited your atelier when I first joined h2g2 but was very nervous of all the elegnat andf intelligent peeople you had visiting you. !!

So it is lovely to meet you now, a fellow traveller. I welcome the day that I went into a wheechair - It has given me the liberty to continue living on my own, in comparative safety. Can I suggest that you try a reclining chair to sleep in. Electrically operated. I have never slept as well as since I have had it. Although unfortunately mine is very old and stopped working the other day leaving me feeling like a stranded whale. !! However I have ordered a beautiful new one, and when it comes at the beginning of next year I shall be able to recline and sleep in comfort. Something I had not done for years, In addition |I have not had pain for yoicks although it is starting a little hnow. !!
So courage ma chere amie, and life in your wheelchair will continue very happily especially when one is linked to such a site as this
quite wonderful one.

Bon courage,

Christiane
AlsoRan80

Saturday 13th November 2010 7.48 GMT

Thank you so much for your kind thoughts!

Unfortunately, my condition, syringomyelia, has robbed me of all my strength and much of my feeling from the hips down. I push aside the foot plates and stretch out my legs when I'm in one place for a while, but I need them to be off the ground to move around.

I'm hoping to get a spiffy new wheelchair with pneumatic tires, elevating leg rests and a reclining back, so I can turn it into a chaise longue when I want to kick back and read. At the moment, I feel like I'm living in an airplane seat and I try to get out of the chair and onto my bed several times a day, just to straighten my back and legs. And get off my backside!

May I ask what put you in a wchair to begin with?

By all menas Lil...

Ten years ago I was diagnosed as having ppsoriatic arthritis. The orthopaedic speciaolist when exasmining me told me that when they did the double hip replaement which they wished to oerform, that with my high blood pressure I would probably suffer a stroke during the operation.
It was my choice. I said that I would rather bew in a wheelchair than suffer a stroke. They let me be. And I had a stroke in any case which merely left me with a memory that sometimes plays tricks on me and I cannot remember.....##However I am really a very happy old bird with relatively no pain. Thank goodness I did not have the op as the psoriatic arthirtis has destroyed all my pelvis and that is what I am getting used to not having.

I quite understand that getting rid of your foot rests would certainly NOY suit you so for goodness sake do not listen to my ill-udged advice. !!

Yours is quite oviousoly a totally different kettle of fish. I seem to remember reading about some operation which they were going to do. It seems very difficult to care for your illness of your nervous system. Oh dear. When things go wrong etc. etc.

STill I am very pleased that up to now my brain seems to be functioning fairly efficiently. !

Lovely to chat to you and |I hope this will be the start of a lovely friendship.

Go well, dear Lil

Chriistiane
AlsoRan 80 Sunday 13th November 2010 01.00 GMT