Thursday, 28 October 2010

Getting out

I am not looking forward to the colder months ahead. Getting out has already become more difficult. Firstly the process of transferring between indoor and outside wheelchair is more involved with the need to transfer feeding system between the two. It doesn't take that long, but its another thing and if the carer isn't here it has to be fitted in with everything else that is going on. Then there is the increasing physical limitations. I am no longer able to bomb around at a breakneck 7.5 MPH because I can't push the joystick forward far enough and because the bumping around causes me to slip out of the seat. The cold weather makes this worse as it causes my legs and core to go rigid and I end up almost lying down.

But the biggest deterrent is the fear of the dreaded puncture. I have to admit that going out by myself is at best, foolish and at worst, completely irresponsible. I don't take my eyegaze system out usually because it is difficult to see where I am going with it on and it wouldn't survive a shower of rain. So if I have any problems I have no way of communicating. I have stuck a card on the armrest pointing people to a larger sheet kept in the bag on which I have printed my 'instruction manual'. It includes various contact numbers including a wheelchair recovery service and details about changing wheels amongst other information. However, it relies not only on whoever is helping having some common sense to decide the best course of action but also them being able to give up at least an hour of their time. And knowing this means I constantly worry about the need for assistance and feel guilty that someone is going to have their day considerably inconvenienced if I do.

When I do go out I spend most of the time carefully scouring the ground in front of me for potential puncture inducing debris. Items on this list are numerous and include screws, nails, broken glass, thorny brambles, drawing pins, various metal items which have fallen off bikes and cars. Once spotted, I try and commit the location to memory for the return trip. It is probably verging on paranoia, but the fear of being stranded without being able to communicate is now significant and is either deterring me from going out or spoils the experience when I do.

I have until now forced myself to get out at least once a week just to know that I can still manage it. If a longer period elapses between outings I fear that just a small step change in my strength or range of movement will prevent me from using the outdoor wheelchair . I have already lost the ability to turn right, so I have to spin anticlockwise 270 degrees instead which confuses everyone, and the next person who says "ooooh,  showoff" might regret it! I am hoping to get the controller modified to make right hand movement more sensitive, but it might not help.  So with the winter months approaching this maybe the last time I will be able to get out by myself. And that fact is hard to deal with.


Becky said...

You certainly provide an alternative perspective to my own moaning about the weather ... Sending you lots of love and good wishes.


Anonymous said...

You write so well, every emotion you feel is there for us to feel as well. Only of course we can never really feel or understand what you are going through. We take so much for granted and your blogs always make me remember how much we should be aware and grateful for everyday things.I'm sure that you will still make the most of everyday. Love to you all Christine

John Cunningham said...

What you need is some wheelchair/hoover hybrid to pick up all those annoying spikey things... something like the street cleaners use.
Keep on trucking

Anonymous said...

Your determination is amazing. I would have resorted to day time TV ages ago. I hope your carer can help you get out and about and I'm sure there will be family trips to look forward to. Thinking of you all. Anna P

sally said...

i have just found your site on the internet and i am now laughing and crying at the same time.My husband was diagnosed in january 2010 and we are all just coming to terms with it. He has he's 3rd apppointment today which is probably why i looked up mnd this morning and found you. I will keep on reading and hopefully i will be able to share our experience. Sally