Entry 24: Every Eight Hours

The original idea of this blog was to share what it's like living in a chair with my able-bodied friends, and also any kind of support or tips I could possibly give to people out there who are also living with an Sci. I'm afraid I went a bit overboard this week bombarding Facebook with SCI awareness stuff, in an attempt to raise some money for The Backup Trust. Setting up the "Just One Day in a Wheelchair" challenge, and seeing what the response was in general from, well, everyone, was really interesting… From those who got completely behind the idea in aid of raising awareness and money to those who saw my countless images/videos/reminders and happily ignored it because it's not something directly linked to them – there is after all something of an emotional distance when looking at something online (kind of like when you text somebody rather than phoning and speaking directly to them). There were those who thought it was almost outrageous – how could a person who is able-bodied possibly understand what it's like Living with an Sci, just sitting in a chair is actually the easiest bit of dealing with it. As one person said, and I am totally copying and pasting their words here:

 "I'll make my donation a £100 if they sit  in shit (preferable a loose movement) and piss while out somewhere like a shopping mall , party and have to get home and washed and changed without standing up."

Which kind of nicely sums up that end of the spectrum really.

I think it is true that people simply just don't know – because why would they? – They really think that having an Sci is just about sitting in a chair. When actually in many ways the chair part is the easiest bit. I won't deny that I had quite a few issues with being in a wheelchair, with being pushed around, and then when I was finally in a power chair I felt like I had become like Davros himself – incredibly ugly, incredibly conspicuous and taking up an elephantine amount of space. In fact it's the lack of dignity I suppose, and lack of privacy, that can be the hardest thing. No sensation telling you that you need the toilet, therefore accidents occur. Even the best routine in the world cannot control the body if the body wants to eject its contents one way or another. And I would say it is a very rare and fortunate person with an Sci who has never had a public accident. Yes, I've had them. I have both peed and pooed in public, in front of my friends, in front of strangers… And yes, I have no dignity left – so I may as well share this with the whole wide world on the Internet!

I remember I was having a phone call with somebody who I was connected to professionally, and they asked the general "how are you?" question. Because I was so used to just telling it as it is to doctors, nurses, parents, friends, PAs, I didn't stop to think not to share what was happening with my latest bowel movements. I remember there was a slight pause on the end of the telephone and then being very politely told that I don't have to share everything and a simple 'fine' would have sufficed! I think I did actually have the grace to blush, and made a mental note that not everyone is aware of the Bristol Stool Chart!

There are the spasms, when your muscles suddenly go into rapid shaking mode. For some people these are incredibly painful, for others they are incredibly dangerous because they can actually spasm out of bed/out of their chair/hit things in the local vicinity. Opinion ranges from being glad of having spasms because it helps maintain muscle tone and can be a form of exercise to absolutely hating it because it's so painful and disruptive. In the last few weeks for some reason my spasms have changed in my right leg, probably something to do with muscular tightening. At night time just as I'm falling asleep it feels as though someone has grabbed my ankle and yanked on my leg. The first time it happened I very nearly did shoot out of bed with shock… I totally thought there was a poltergeist in the room pulling on my foot! Either that or my PA was playing nasty tricks on me! Now it's very hard sometimes to actually straighten out my right leg. And this is not a good thing.

Problems with kidneys due to all the medication can arise, and in my own particular case due to restricted lung capacity, be highly susceptible to chest infections and pneumonia. I mean, essentially, the list can go on and on with the day-to-day issues of living with an Sci. It's not just about not being able to walk. And that's without even broaching the subject of accessibility, skin issues and people who are able to walk, the ones with an "incomplete Sci", and thinking about the differences between paraplegics and quadriplegics.…

So I'm going to end this week's blog with my last video clip that I uploaded to YouTube For SCI Awareness Day. It is almost 10 min long, but I do ask that you would watch it through and consider donating just £1 towards sponsoring my friends who are taking part in the "Just One Day in a Wheelchair" challenge. The money will go to a charity that not only helps people come to terms with all of the things I've mentioned above, but actively helps people to break down those "I can't" barriers and live a full and active life in any way they wish to. 

http://www.justgiving.com/justoneday-wheelchair

http://www.backuptrust.org.uk