The end is in sight for International CMT Awareness Month!
It's been an exciting month and I hope you have enjoyed what I have had to share with you.
Walking Wheelchair Users
There seems to be a common misconception that being in a wheelchair means that you have either paralysis, or otherwise have no use of your legs whatsoever. This is untrue yet still people question my need for a wheelchair, whether with a scathing look or sarcastic side of the mouth comments.
I am increasingly reliant on a powerchair to get around, however I
can walk. In fact I try
to walk as as much as possible in order to slow the wasting of my muscles.
I want to try to explain how it feels when I walk and try to balance either whilst moving, or whilst stood still.
This then may shed some light on why this particular walking "cripple" relies on a wheelchair at times.
Whenever I attempt to walk I have to concentrate so hard on every little step, carefully thinking about where to place my foot because CMT impairs my ability to sense the position of my limbs.
I have to carefully plan every single trip outside of my home, considering whether there is somewhere to park right outside my destination, places to sit once there, and not too much walking once inside. Knowing the type of terrain is also important, grass, cobbles and steps are all no no's with slopes and other rough ground being issues also.
Walking with crowds of people is impossible now as I simply cannot stop or change direction without falling. Standing still, to have even a brief conversation, or to pay for items at a till in a shop is so tricky. My balance is appalling and I am usually seen swaying like a drunk pirate if I have to stay still for even 10 or 15 seconds!
Because of these issues, just the sheer effort of conscious walking, even a few yards, usually leaves me with "jelly legs", wobbly knees and general all over fatigue, thoroughly ruining any chance of me enjoying my trip to the shop or other adventure I've chosen to
spend my spoons on!
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So, if you see me out in my chair one day...
...then shuffling round with my walking stick a few days later, please understand that this doesn't make me a con artist, "faker", or benefit cheat. It simply means that my physical capabilities and needs on those two occasions differed. Similarly, if you see me stand up from my wheelchair, maybe to reach an item off a shop shelf, please don't judge.
We should all accept that disabilities vary and it is neither fair nor appropriate to question a persons "need" for a wheelchair or other aid that can help a person (disabled parking bays spring to mind here!).
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Thank you again for joining me on my CMT blogging journey.
To read my other Awareness Month posts, simply click on the "Awareness Month" tag at the very bottom of any of these posts!
Please share these posts far and wide!
If you are interested in finding out more, the UK's official charity for the disease, CMT United Kingdom, have a wealth of information.
xxSAMxx