Hi guys, I realise it's been a couple of weeks since I
posted a fresh blog online. This is mostly because I have been focusing
big-time on the "One Day in a Wheelchair" Challenge that I sent out
for Spinal Cord Injury awareness day (which was on 17 May). My last blog talks
a lot about it, and why it was so important. http://www.themobilityresource.com/7-surprising-and-odd-facts-about-spinal-cord-injuries/
my favourite of which is No 1. We don't sweat and also and No 6. We can pee
through our bellybuttons. I guess I'm mentioning this because it's raising
awareness again that being in a wheelchair with a spinal cord injury is not
just about hurting your spinal cord and now you can't walk… It always affects
more than just the legs.
Which again was why I challenged people to spend one day in
the wheelchair – to make not only the "disabled" person aware, but
also their support team, and anyone that they happen talk to about it, that it
just doesn't mean simply not being able to walk. And why it's important to have
charities like The Backup Trust, Aspire and the SIA who all provide essential
support one way or another that can help literally piece a person's life back
together.
I went out for dinner the other night with a group of
girlies and was surprised all over again by something that has affected me through
my SCI. As a teacher I used to have very good voice projection, able to be loud
without actually shouting. Now however because I literally only have my
diaphragm and maybe the odd stomach muscle enabling my breathing, my actual
voice control is minimal. In fact I'd go so far as to say non-existent! No. 5
on Tiffany's list is that we can't cough. I know I have definitely gone on at
length about this in previous blogs, but I realised on Sunday that the exact
same reason why I cannot cough is also why I was shouting at the top of my
voice and straining to be heard but it was barely registering on the decibel scale!
Now this was a bit of an eye-opener for me because I still
think in my head that I'm really loud. I'd turn to say something quietly and
privately to my PA and she wouldn't be able to hear me at all even though she
sat right next to me… Because regular talking volume for me now is everyone
else's version of "quiet and private". I had to psychologically get
over the hurdle that regular volume would be okay when asking her to do
something which I really wouldn't want others to hear. I had visions in my head
of those moments that you see on TV where a person ends up shouting something
at the exact same time everyone else around them goes silent – and they are
always saying something embarrassing. Fortunately for me all those girlies I was with were such chatterboxes there was no chance of there being a silent moment :-)
Sunday also saw the return of the Reverse Nerve Syndrome*
that I seem to suffer from. Because my brain is no longer connected properly to
the nerves below my fifth vertebrae in my neck, any messages or feedback my
brain is getting from my body always has to be translated and analysed whether
it's actual/realistic/make-believe. Sunday evening was very cold, and the group
I was with were all very, very chilly wrapping themselves up and shivering. I,
on the other hand, felt like I was sweating! I could touch my hand on my face
and I could tell my hand was freezing… But that didn't stop the signals in my
brain firing off saying hot hot hot! When I got home, the warmth in my flat
suddenly made me feel freezing cold, and I had to be buried under my duvet.
It's all psychological I'm sure, but at the same time it's so hard to judge – am
I really hot? Am I really cold? Am I having an A.D. attack? I guess this is
part of the whole deal when SCI sufferers have difficulty controlling their
body temperature. You literally cannot tell what the truth is! (*Reverse Nerve Syndrome in this case is my own made up term for what I seem to have… If it's a real actual syndrome then that is not what I'm talking about)
You end up
relying on what you can see out the window, what the thermometer is saying,
what sort of coats are people wearing as they walk past outside; you make your
decision based on how long you will be out and how long you need to be outdoors
for. And all of this happens before you actually decide what it is that you
would actually like to wear, and then you may wish to consider style/fashion,
how much time you have to put on an outfit, is the PA you well with at the
moment able to dress you at speed or will they take longer than usual, (yes
some things take longer than others, simply because you then have to consider
where you're putting your leg bag, or they are tighter and need more adjusting
than other things)… No wonder I end up having days when I just stay in bed –
getting dressed as such palaver that I may as well just stay in my pyjamas!
So, I'm going to end my blog this week on that note. When
you next get dressed, consider how much time and effort it really takes you and
think about what I just said. Below is the link to the SCI Awareness Facebook
page I have set up, where you will find videos and photographs of my friends
who took part in the One-Day In a Wheelchair Challenge. I have also added the Just
Giving link where people can donate towards The Backup Trust. Thank you!
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