Entry 27: Wibbly Wobbly, Flappy Dappy. Blinkin Tea!!! Gggrrrr....

I love meeting up with other people who are wheelchair users, mainly for swapping stories and hints and tips on accessibility and life in general… Usually I'm just sat there in awe as I listen to what people have been doing with their lives, how much fun they been having an wondering why I'm not also doing these things.
I had the opportunity to do that last weekend, travelling all the way up to Loughborough for a backup trust meeting. We were staying in in a sumptuous hotel… I have never seen as much glee depicted by my PA as when I told her there would be a free gym and swimming pool, Jacuzzi, sauna and steam room. To be honest I was rather green with envy and I tried to put the spa on the spot by asking them about their facilities for possibly getting me into the pool. I had already thought about it and decided not to bother bringing my swimsuit as there just wouldn't be time… I loved going in steam rooms, splashing about in the water and a Jacuzzi, but the faff it would take to get me into my swimsuit then suitably covered up, put back in my wheelchair, taken down to the spa, the hoist prepared to transfer me over to the pool hoist/chair, then lowered in, have a swim… And then do it all again in reverse left me just feeling exhausted. And there was already enough to contend with. I was highly amused when I was woken the next morning at 8:30 AM to find my PA had already been in the pool since 7 AM and eaten breakfast!

I was looking over my diary wondering what it was exactly that has kept me so busy from posting lately and to be honest I think it's a mixture of having had fantastic visits from family, seeing friends,
meetings with work, meetings with Backup Trust, meetings with spinal consultants and rehabilitation consultants and being Grand Central Substation/Mission Control with organising and finding funding for new accommodation whilst stuff is going on with my flat. Couple that with actual writers block – not knowing exactly how to put my feelings into words, and then wondering if I should even in doing that when this blog is about what life is like in a chair… So then wondering what new things to share that I have found either difficult or easy or different.

I'll tell you what though, having an SCI as a woman does not stop the Curse of Ladies everywhere: PMS.

And boy have I been at the mercy of it the last few days. Emotions all over the place, crying for no reason, getting really angry over insignificant things, feeling deliriously happy – all within 12 hour period. It's a cruel irony somehow! I'd say at least I can't feel the cramps, but I have a feeling that if my cramps are happening they just turn my body into spasm mode. Usually when I'm going through these times it's best to just avoid me completely!
It's been a right bugger dealing with everything when frankly all I want to do is stay under my duvet! Oh yes, that brings me to something I did write down but it's rather involved and going on about escapism but it kind of amused me and made me wonder about other people and how they cope…

"My Patronus Is a Duvet" is a thought that has been rolling around my head for some time now. You may have already seen this photo

that was taken of me some time ago, and to be honest can still be frequently seen if you pop around to my place after 5 PM. When I first saw this picture stating " the TARDIS is my Patronus" My initial thoughts were – "YESss!! Absolutely…" But then I thought hang on a minute in reality what would my actual Patronus be? (Taking on board that shouting 'Expecto Patronum' and waving a pointy stick can actually produce an incarnation of the caster's inner most positive feelings to ward off that which will suck out all the joy and positivity from within. Yes. I know.)

So, fully delving into the fandoms of Harry Potter, Doctor Who and various others, I realise that I may have taken a deeper plunge into escapism as a way of coping with everyday life… Or at least relating to it. You know that you have possibly taken on board this protective charm far too literally when in a half awake-half asleep state you feel panic and dread arising in your chest, and you tell yourself it's okay I'm still under the duvet so nothing can hurt me… I don't have to deal with anything yet. Using the duvet essentially like a patronus. Oh dear.

Anyway, in an ever ongoing battle to see if I can get any responses from my readers, I did wonder what other people's patronas' would be? Please do make comments below otherwise I'll think I'm just a fruit loop on my own out here...

Entry 26: I Have Not Forgotten You!

Dear blogians/blogites/friends/family/loved ones… I just want to let you know I have not forgotten about my blog! I know it's been a few weeks since I last did post, and to tell you the truth I have written a number of times things that I wanted to put on here. However as I continued to write, there was more to put down.

I guess I also ended up having a slight crisis of TMI – I always write knowing my friends, my family and anybody who knows me who could avoid me in the street may well read it. I therefore bear this in mind and so only write about things I'm willing to properly discuss face-to-face. I think it would be a different case if it was purely strangers who I felt were reading my blog. There may be a no holds barred, share everything down to the last grisly detail if it was just the strangers. But that's the thing with the Internet, you never know who is watching! I'm fairly certain I would be shocked if I knew exactly who was reading this.

Anyway, I just wanted to let all of my lovely people out there who have helped me reach over 5100 hits :-) that I am continuing to 'share life in a chair'– it's just working out what to put in and what to leave out simply because there's been so much!

Next week I will put a proper blog on, catching you up with the overall craziness that is chair-life, but for now I just want to say a very very big thank you to everyone out there who supported the 'Just One Day In a Wheelchair' challenge (see previous blogs), we have raised nearly £900 for the Backup Trust.The fundraising continues, as the Just Giving Page is still open and online, although the challenge of spending a day in a wheelchair was  taken up by two people and when I have asked again no one else came forward. I hope that means that people realised the enormousy of how much their lives could be affected and that even just one day to try it out would greatly impact on everything they do day-to-day. It's all about Raising Awareness (as well as the money obviously) and if we've got people thinking then that's Mission Accomplished as far as I'm concerned.

Entry 25: Awareness – Being Able to See beyond Your Personal Universe

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.

I came across a really cool article written by a girl called Tiffany Carlson called "Seven Surprising (and Odd Facts) about Spinal Cord Injuries"

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!

https://www.facebook.com/SciAwareness

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