Posted by: powachair on Apr 20, 2010
Tagged in: wheelchair , weakness in legs , weakness in hands , weakness in arms , swelling , swallowing difficulties , stiffness , myositis , muscular dystrophy , muscle weakness , muscle atrophy , lung infections , itching , inclusion body myositis , humour , high sugar levels , high blood pressure , Headaches , foot drop , elevated cholesterol levels , eating difficulties , dysphagia , disabled toilets , Disability , depression , body fat gain , back pain , assistive devices , arthritis
To walk or not to walk
that is the question
I was diagnosed with Inclusion Body Myositis in 2000.
I have been getting progressively weaker and have adapted my lifestyle to suit these changes. Never in my wildest dreams did I ever think that my strong healthy body would suddenly start deteriorating at such a rapid rate. It has now come down to partial use of my right arm only. My left arm and legs are “just there for the show” to prove that I was once healthy.
Please don’t get me wrong I am not complaining or looking for sympathy, but merely making a statement as a preamble to my explanation of how I stay sane and out of the depths of depression. The deterioration has been steadily progressive from sudden unexplained falling, to using a walking stick (still falling), to walker (still falling), to manual wheelchair (no more falling), to power wheelchair and hoist to bed, toilet etc. At least I don’t fall anymore.
I lived for years trying to stay mobile even though I was petrified of falling over or tripping over the most insignificant things or even sometimes just falling for no apparent reason. I would not or could not use stairs of any height unaided and even then I really struggled. My heart would beat so fast out of sheer fear of falling that it sounded like a jackhammer in my ears. I actually often wondered if others could hear it too.
The came instant relief to my plight in the form of my wheelchair. The first time I sat in it the sense of relief was almost overwhelming. I knew then that I should never fall again. Why I persevered for so long, while cracking ribs, toes, fingers, etc I will never know. All I had to do was put my pride in my pocket and accept that I had a serious problem.
I could no longer drive and could also no longer work. I ran my own tiling contractor business and now couldn’t get on sites where the chance of falling over building material, or into foundation channels was very real. I tried to work from home on various projects like telesales, call centre operator and others but as the disease progressed it became more and more difficult to use everyday items that up to now I took for granted.
Then I discovered that I could manage to type, with some difficulty yes, but nevertheless still type. I started corresponding with people all over the world who have the same disease – until my arms, after a few years, got too weak to type. My son then showed me a program on windows that provided access to the disabled. I found an onscreen keyboard where I could point to a letter and click. This was quite a slow process but I was back on line.
Recently I upgraded my computer and loaded a trial version of Windows 7. This program also has an onscreen keyboard but with the extra advantage of predictive text. This has really speeded up my typing whereby I only have to type the first two or three letters before a word selection panel pops up where I can select a word or ignore and type in a word from a chosen dictionary. WOW what a difference.
Now that I have an upgraded computer it has become my communication tool and keeps me occupied all day until my family return from work.
- I struggled to open CD/DVD covers. Now all my CD’s are loaded onto windows media player (music at the touch of a button without having to struggle with loading CD or DVD
- Contact on line via Skype or Facebook – I can “phone” my friends for a chat. Hope I don’t get them into trouble with the boss.
- Email to friends all over the world
- Games to play until I am sick of them.
- I can draw, paint, make cards, certificates etc. Many other things if you have the programs or ADSL.
All this, without even going on the internet. There are unending uses via the net with phones, cameras etc. Thank God for technology and the people who create new and useful things for us to use. I am so grateful for my computer. I’m not isolated anymore.