Blogging from My Bed

so it's been a while since my last blog. I now find myself brought to something of a standstill, confined once again to the comfort of my bed following the breakdown of a patch of skin in what I call "a delicate area"… Whilst it means I cannot get out and about, it also affords me plenty of time to stop and reflect, surf the net and really, if I wish to, update my blog. I want to say that I find myself with so much to enthrall you with, my life is so vastly interesting after all, that this missive shall be filled with adventures and misdeeds so unparalleled that you would wonder how one woman can achieve so much in such a short space of time. Naturally this is all just baloney, and I'm starting to think there really is no point continuing this blog.
Dearest readers, I thank you for taking interest in the things that I have shared – the aim of the blog being to equip and inform those without direct knowledge of life in a wheelchair, and encouraging those who know it all too well that they are not alone. However the new year has begun, the proverbial page has turned, and naturally being of the reflective sort, I find myself wanting to draw a line under 2013 and begin again. Not that 2013 was so very bad; it had its highs, as well as it's lows, there were achievements and there were non-starters, there was health and there was illness, work and play. There were goals I wanted to achieve, and I did it. To quote the ninth Doctor: "Fantastic!"
It is a truth universally acknowledged, that a single girl in possession of any income must be in want of cat. I have resisted the inevitable for a long while, and although I shall always be a dog girl at heart I fear that for the time being, a cat would be the best option. To all my friends out there I do beg please do not let me become The Crazy Cat Lady! A very good friend has offered one of hers to me and I have to admit I'm very excited about that fact. Amongst all the other benefits belonging to owning a furry creature that appears to be delighted by your company (even if it is a food-based pleasure), this particular animal has an extra digit of each paw… It is a cat with Thumbs. Love it. I will hopefully be the owner of a Mutant! She shall become known as the Mutant Ninja Kitty – and all other cats shall quake when she approaches. Or at least, I like to imagine it that way…
Perhaps it is time to draw a line under this particular blog, but there may become a page following The Adventures of the Mutant Ninja Kitty – will she fight for good or for evil? Will her hackles be raised by the intolerance of others? Or will her claws come out to fight for the right of Being Different? The fur might fly, or she may slink her way through the neighbourhood, unseen and unheard – creeping through cracks, wiling away along wall tops, forever in search of the warmest, most snugly place a feline could safely catch some Zzs...

Entry 32: #Mirandamoments

Well hello and good day to you dear reader wherever you are. I do hope you're well and smiling. Okay, back to me… Previously in my life I was writing my weekly blog but ran out of things to say as I sank into a depression that saw my ability to get out of bed shrink to a daily struggle. Thankfully because I do not like to smell and I have also got some very blunt friends, I did at least manage to shower fairly frequently.

The major breaking headline that will bring you most currently up to speed with my personal 'Share in a Chair' Life is that I have managed to return to work (in my head I can hear general applause so thankyoutoyoukindregards, my imaginary cheerleading squad). Returning to work has thrown up an incredible amount of challenges on a number of different fronts. More on that in a moment.

In other news whilst the summer weather was glorious this year I did manage to completely burn my feet and they inflated into two very red balloons at the end of my legs. Even now, several months later, on a very cold day you can see the area where the skin was damaged. Note to all - Wear Sunscreen.

And finally, my two-bedroom flat that I live in, where I sleep in the lounge, get dressed in the lounge, eat in the lounge, work in the lounge, entertain guests in the lounge, stay sick in bed in the lounge, watch TV in the lounge and so on, is finally being renovated. The main hall corridor was too narrow for my power wheelchair to turn into either of the bedrooms and also the bathroom doorway was so narrow I could not go in there unless in my shower chair. For the discerning amongst you, you'll realise that meant any toileting i.e. emptying of leg bag, had to be done in the lounge or in and around the bathroom area without closing the door. You know you are considered a true friend by myself if I'll happily urinate in front of you as it only involves a bottle and the flick of a switch. Oh and a pair of rubber gloves by those of a more hygienic ilk.

So, I have returned to work. When I say returned, what I mean is I now work two partial days a week as opposed to the full-time, frenetic contract I was previously on. The first thing that really struck me was blind panic on not being able to cope with the demands and rigours of being a teacher in the classroom. I hadn't needed to work my brain for so long that when I was in lessons my brain strongly reminded me of a slug attempting to crawl towards a boozy trap laid down for my consumption and delight. The problem was that my brain felt extremely slimy, sloppy and lazy, so the old grey matter metaphorically slipped through my fingers and I could not get a grasp on any of the material I was meant to be teaching. I could not form sentences, I could not develop a flow of questions and I felt as though I would implode. Particularly as so many very well-meaning and kindhearted people kept telling me how well I was doing. More than once I returned home as a quivering wreck to my PA, who then had to deal with a snot-ridden, wailing banshee who still could not form sentences or even at times simply draw breath… I do believe in medical terms this is what is known as a "Panic Attack". On the plus side, it did bring me out of my depression so it wasn't all bad.

Don't get me wrong, returning to work has been a goal of mine pretty much ever since I left the spinal unit three years ago, and it is something I still very much want to do but like with everything in the disabled world, nothing is ever as you would expect it to be. First and foremost I was very, Very, VERY fortunate that my job was still even open for me, which of course made this possible, along with the incredible support of my colleagues, family and friends. However after having had three years of not needing to be tied to any responsibilities or have any commitments whatsoever, being able to do whatever I wanted, whenever I wanted, meant that having to turn up two days a week and deliver lessons felt like enormous pressure. So much can go wrong to prevent me from turning up anywhere at any time, that the commitment of turning up to work on time twice a week felt impossible to maintain. I honestly did not think I would make it to half term… But somehow I did (thankyoutoyoukindregards, again to my imaginary cheerleading squad).

Now that I am passed the half-term-halfway-point, I am actually feeling incredibly positive about the whole thing. As one wise person said to me, I just had to give myself time to settle in and readjust. I mean, did I really think I could just roll into the classroom and pick up where I'd left off three years ago? Of course not, that would be silly! (*Okay I did expect to… I still thought I "had it", but apparently I'd "lost it" and I needed time to "find it", which was a real shock*) and I realise I am still adjusting. After all, I cannot do what I used to do with having no working limbs, and the size of my chair often means I cannot get to every pupil in the classroom or even sit close enough to them to see their work properly. This is why I have to develop new skills in working in partnership with my PA at school; a whole different ballgame to working with a PA at home.

Anyway, moving on… It has now been a few weeks since I wrote the above. Life kind of ran away with me and as they say time waits for no man. As an addendum, if indeed 'addendum' is the correct word to use here, (good word 'addendum'; I think it's all the Ds but it almost sounds like the beginning of the Eastender's theme tune. Try saying it out loud – ADDENDUM… ADDENDUM… Ahem…) I have now moved back into my lovely abode following the finishing off of the renovation works. Cue massive sort out and reorganisation of literally everything I own – perfect excuse to go to IKEA :-) and downsizing/minimising/dematerialising literally everything I own from clothes to crockery to classic-nay-vintage CDs that I will never play again. Whilst it is something of a mammoth task it is almost like Christmas, as one opens a box that has been in the shed or under the bed for the past twelve months and you wait with baited breath to see what long forgotten treasures are stored within. The charity shops of my town won't know what's hit them!

Anyway chums, I must be off but it has been lovely catching up and sharing this little missive. I'd love to say it will be a regular thing but the idea of commitment at such a level is a bit too much for me right now (the word "commitment" is in fact a dirty word in my house, and should you so sully my ears as to sound it within my walls you would be requested to either 1. Leave via the back door whilst performing a Celine Dion song of my personal choice or B) reenact one of the latest bush tucker trials from "I'm a celebrity…".) You have been warned.

                                                                        

Entry 31: I had to share this… It says it so well

I came across this on my Facebook page and I had to add it to my blog – it's somebody else's blog! It's entitled "This Is What It Feels like to Be Quadriplegic", written by a guy called Jimmy Anderson. Since mine is about sharing with the world what it's like to be in the chair I thought it was rather apt.

Thank you for reading :-)

This Is What It Feels like to Be Quadriplegic

Entry 30: Timeout Folks

Hello there my fellow blog readers. I realise that it has again been a few weeks since I put in my last post. Of late I seem to be very slack in what I have to share from life in my chair… and I'm going to explain why now.
At first I felt as though I had run out of things to say. There's only so many times a person can go over some of the really poignant and more shitty times that basically get repeated over and over again e.g complaining about my PA, discussing the trial of having your life completely turned upside down, attempting to find a positive in all of the negative. Keeping everything in perspective.
A lot of people who read this blog are people who know me personally, and as more people tell me they are reading my blog the more self-conscious I become about what I say on here. 
You know that I have always had to deal with a certain level of depression. And then there are strangers out there reading this blog who have no doubt managed to pick this up among all the reading. One of the ways my depression manifests itself is by my withdrawing from those around me, especially those who are close to me. I know that for some people alarm bells will start to ring if a week or more has gone by and I've not been in touch.
Over the last few weeks there have been a lot of changes, bad news, and ill-health occurring around me and to me. I hate being out of control, and I hate even more that being tetraplegic means I cannot help others when they are going through a really bad time or when they simply just need an extra pair of hands to help. It is so painful watching those you care about going through scary, stressful and life altering situations and you are only able to sit and watch from the sidelines because you cannot get up and give them a hug, or do anything helpful that will relieve the pressure for them...
And then I started thinking about how selfish I am feeling down on myself that I can't help others when they are the ones in dire straits. It's a vicious downward spiral of self pity and hatred and anger and frustration towards my tetraplegia, and a feeling of helplessness because there is nothing I can do about it. I try to remind myself about Keeping Perspective, but it's incredibly hard when you know just how much you've lost and you know there is no hope of ever getting it back.
So, there you go guys. I've not be able to write anything for a few weeks because I had all this stuff going around my head. I have highs and lows, just like anyone, and lately I've been more low than high. 
I think I shall make this my last official post for a while. It will take the pressure off me needing to write anything, and then you also won't need to wade through a whole load of "'woe-is-me'/why do I bother reading this stuff?" And then hopefully when I next blog it will be something interesting possibly even humorous. Thank you for reading until now and hopefully I will write to you again.

Entry 29: Tingle's Top 10 Tips to Survive… A Party.

1.      Organise your party outfits in advance. It could be sunny and hot, cloudy and cold, rainy… One party dress does not fit all scenarios. Perfectly valid reason for clothes shopping :-)

2.      Ensure leg bag/bladder completely empty before arriving thus enabling much longer period of time before needing to evacuate.

3.      take medication in advance or if not, ready prepared to be chucked back at appropriate hour in the middle of the fun. Be aware of the effects of alcohol on said medication, thus any side-effects will be completely of your own making.

4.      Prepare "party survival kit" to include wet-wipes, tissues, plasters, bottle to empty catheter into, anti-bac, hairbrush. Okay the last one is mainly for the girls, but you just never know!

5.      Take two strong men, or failing that, ramps to enable access to all areas.

6.      Assess as many doorways as possible prior to alcohol consumption, in the hopes that post-alcohol consumption you will be able to navigate through them without leaving your own personal Mark of Remembrance.

7.      Have as many people as possible assist you in the eating and drinking. Score them out of 10 and reveal the winner at the end of the night. Especially get those people who appear to be slightly freaked out by pink elephant/wheelchair in the room… You'll know them. They are the ones that keep giving you funny looks or avoiding looking at you at all.

8.      Freak everybody out at least once by saying you need an ambulance. And then say "oh no, wait, it's just indigestion…"

9.      Attach mobile to forehead using wide elastic band and velcro. You'll be able to take pictures at own leisure and in-case you do pass out someone can ring your ICE contact/call cab/ or just steal your phone. Well, of course, fool. It's stuck to your head.

10.   Hydration, Hydration, Hydration. And finally, the key to successful partyage, is to thoroughly enjoy the whole evening, partake of all beverages, food, wiggle some dance moves out, and then drink a gallon of water before bed. This gives you the Ultimate Smugness the morning after...

               Them: "mate, my head's pounding like hell....what a night, eh?"

               You: "Yeah, it was great. And even though you and I consumed an equal amount of                alcohol, and we are comparative in height to weight to body mass ratios, my head is, in fact, not pounding. Ha!"

Entry 28: One Does Not Simply Walk Back into the Classroom…

When I was just a little girl I asked my mother what would I be – Will I be famous? Will I be rich? Here's what she said to me:

Que sera sera, whatever will be will be. All you can do is try your best – no one can ask anything more from you than that.

When I was just an awkward teen, my friends asked me what would I be – will I be a writer? Would I be a teacher? Here's what I said to them:

I've got no idea, don't know what I'm good at. Maybe a truck driver, may be a dreamer. But I will NEVER be a teacher!

When I became an adult, I asked myself what would I be? Earning the min wage or did I want something more? Here's what I told myself:

I know I'm not the smartest, but I'm also not stupid. I know I want to make some money, to live comfortably without having to worry. What could I do? I couldn't be a doctor. I couldn't be a lawyer. So teaching will have to do.

What I discovered was that I actually really love this profession. I'd refused to admit it for a very long time, mainly because all of my other friends were going to become primary school teachers. Rebellious me ended up as a secondary school teacher. I know I wasn't the best teacher in the world, but I also was not the worst. And I discovered my vocation – I was good at working with others with special needs. Over the years right from childhood I had always had links with children with special needs. Working with them on play-schemes, working with young adults developing their life-skills; I'm one of those people who could not sit in an office doing something that is mindless or without purpose. I wanted to make a difference in the world, and this was the niche that I fitted into.

Fast forward several years and I find myself in a horrible bus crash that has left me paralysed from the chest down. Quadriplegic, tetraplegic, cripple, gimp, Wheeler. Needing 24-hour care, complicated medical needs, unable to feed myself, clothe myself, keep myself warm, unable to turn over in bed, unable to pick up the phone, unable to…*

*Fill in the blank. I was as weak as a newborn baby, and just as helpless.

I was born again. This time with a whole new set of challenges. When I became a cripple, I asked my parents what would become of me? Would I waste away? Would I ever be happy again? Here's what they said to me:

if you want it, then do what you have to to get it. You still have your mind, You still have your voice. It's a choice and it's up to you.

Sometimes I actually feel a little bit like Frodo on his long journey to Mordor. I can remember my 'old home in the Shire', life before the accident, and it seems like so long ago it's all hazy and foggy now. I have been carrying The One Ring (paralysis) and it has affected me, seeped into my every inch of soul, mind as well as body. This burden is mine and no one else can carry it for me. Don't get me wrong, I also have my Sam, Merry and Pippin who have helped me along my journey. But my God, does it takes determination to keep on going.

This week I return to work. Taking it slow and steady, 'graded return' as they call it. It's been over 3 1/2 years since I was last in a classroom teaching. Somehow I have managed to go from being immobile on an ITU bed, with a tracheostomy and a vent machine breathing for me to being back in the classroom again. As my parents said – I still have my mind, I still have my voice and so when I decided what I wanted to do, I damn well got on and did it. 

My very first night I spent outside hospital in my new home I was absolutely terrified. Possibly more so than I had ever been in hospital, because I had nobody there but my PA. At least in hospital you know there are nurses and doctors and HCAs who know what to do if there's a problem.

I wrote the User's Manual To Tingle Tetra, for all my new PAs. I went outside (who knew that could be a goal!? But there you go!). I took a taxi by myself into town. I arranged to travel by train and actually did it. I travelled 300 miles to visit my friends and stayed in another person's house. I taught a lesson to see if I could do it. I got a pet dog. I moved from one end of the country to the other. I went shopping by myself. I became a power wheelchair skills instructor. I started a blog and I finally got a mobile phone that belongs to this century…

It would have been so easy to just stay in bed. And, truth be known, I have had my days where I just can't get out of bed because it's frankly too difficult. That's where Sam, Merry and Pippin have come to the rescue :-) not to mention both of my parents who I can still hear in my head saying "What you still doing in bed you lazy git?" (They're Scouse, and that's how they talk up there!) And a very wise sage told me that it would be in the little things that would make a difference. Don't expect to see huge leaps and bounds made, but instead little by little progress would be made, improvements would happen. And of course with the benefit of hindsight now, I can look back and see how all those things I accomplished, no matter how trivial they may seem, each one was a building block and another step forwards towards moving on with life.

And now I'm on the precipice of returning to work. I am aware that it has taken enormous amounts of input from many different sides. Whilst I know there are other teachers out there who are in wheelchairs, I have not yet come across one who is of such a high-level injury as myself. I have a feeling we may be breaking brand-new ground here. And that leaves me with a very excited feeling because we are leading the way in the field of disability employment in the teaching profession. I'm sure all sides involved are going to be learning new things and coming up against new challenges, not least of all me! But you know what – I love a good challenge so I say bring it on!

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

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

Entry 23: Fixed Point in Time…

Birth certificate, marriage certificate, death certificate. The three certificates of life. Interesting how life itself, particularly in those early years, is marked out by licenses and certificates… Getting your general certificates in secondary education, a drivers license, the pieces of paper that say you're qualified to do X, Y, or Z. If you're lucky you may have a collection of birth certificates belonging to little creatures you have produced…

There's a reason it's called the human race. And there's a reason why there are those who are perceived as winning it, they are financially better off, or better off in a more holistic way such as having a loving family or active social life. Those who are 'doing better than others' are those who are apparently more satisfied with their lot. I guess it all depends on what you personally count as 'winning', or making it. Born out of an innate need inside each of us is that competitive edge to win our own personal human race. You might only be racing against yourself, just wanting to achieve your own personal goals. You might be racing against your siblings wanting to outshine them, or against your friends. Or you may have found that competing is just too hard and so have given up and dropped out of the race.

One of the hardest things for myself is being a fixed point in time.

I have felt this way for a very long time, well before I first became injured. It was as though I was stuck in one place at one time of my life and I was watching everyone around me move forward or onwards with life's little certificates of progress. It was very strange at first watching my friends get married. And then the momentum, the pace of people pairing up and settling down got quicker and quicker. Why I was not one of them is very hard to say, except that it just wasn't meant to be. However I have now entered that time when I am now watching from afar as each of these people produce Sproglets of their own. Life moves forward for them, or it just changes, as I watch some people change jobs, move cities, and in one unfortunate case a marriage breaks down. But me, I'm fixed in one point of time. Nothing changes. Even my hair has not changed since my teenage years!

The creator of the ultra-successful sitcom "Friends" has recently stated that there will categorically be no movie of the programme. She stated that the programme was about a time in your life when your friends are your family, and that that time had passed… Monica and Chandler were married with children, Phoebe had gotten married, Ross and Rachel had had a baby together, Ross even had a child with a former wife. The only one really who had stayed the same was Joey, but thinking of his character he was supposed to be the Eternal Bachelor. Well, I suppose if life is imitating art, that makes me The Eternal Bachelorette!

If I'm really honest when I read about this I actually felt really sad inside because my friends were my family. I spent so much more of my time with my friends than I did my relatives throughout my 20s, and in many ways I relied on my friends more than I did my family simply because of the nature of the relationships I had. I'm very proud of my friends, and I believe the quality of the friendships I have is amazing. Unfortunately, that just means I will miss them even more now that they have moved on.

Priorities change. Family means more, because blood is thicker than alcohol or coffee, lol. And I've noticed as I entered my 30s that I want to be closer to my family. I worry about their health. I want to know my parents better, I want to understand my roots more. And I wish that I could have a family of my own.

Instead, I'm sat inside my very own Tardis, although it is disguised as a power wheelchair and not a blue police box. I make an excellent companion… Whizzing around from place to place, throughout time, helping people where I can. In the late 1990s it was India, throughout the Noughties it was the homeless in Sheffield, it was the lost children in Peru, it was the depressed in Huddersfield and teenagers in West Sussex. And now in the Teenies (!?), Thanks to my own personal accident and situation, its people living with Spinal Cord Injury. The Doctor you could even say is disguised as my PA and regenerates on a regular basis. (Although some of the PA's I've had I would not offer such a distinguished title.) Perhaps that is stretching the metaphor a little bit far!? I have not collected life's little certificates of progress.

So, in the spirit of helping those with spinal cord injury I would ask people who are reading this blog to consider the following – Friday, 17 May Is SCI Awareness Day in the UK. I have challenged my friends to see if one person will step forward (pun intended) and spend one whole day in my manual wheelchair to raise money for The Backup Trust. On the just giving website we will place videos and commentaries updating the progress of what it's like throughout the day, the various challenges faced and things that the able-bodied person taking part discovers about living in a wheelchair. And if nobody does step forward and do it, then I would still ask for donations, because there would have been awareness raised of the difficulties faced every day by wheelchair users.

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

Entry 22: In the Beginning…

This week I had a lot of time reflecting on dealing with having an SCI. Which sounds crazy, in that you'd think I was always reflecting on it but in fact most of the time I'm just dealing with living with the SCI. Management is the key. Life with an SCI requires a great deal management – time management, skin management, care management, equipment management, medication management, and physical/body management. I'm sure there are many others out there who could add to the things that they need to manage when it comes to dealing with their particular SCI. In my last blog I mentioned how I control my thoughts, especially at night time, so I do not think and dwell on the negatives and the loss of my former life and body. However this week I had reason to go back there, to return to that place when I was initially injured and consider how I got from lying in ITU with tubes up my nose and a hole in my throat to living day-to-day life out in "The Community".

"Dealing with it" is I suppose the key phrase here. I was luckily placed in a specialist unit for SCI, who were geared up completely for dealing with each and every one of the things on that tick list. There are no right or wrong approaches, simply because every person is different and will deal with their SCI differently. It's interesting because I don't actually remember fighting with thoughts about never being able to walk again. I do remember the stabs of pain at the thought of never being able to run again, but that was because in the last couple of years of my life prior to my injury really gotten into it. For those who know me of old, they will know that exercise and me never really mixed! And so to lose something that I had so recently become passionate about, that was physical, was quite bitter irony.

I do remember at times I would forget I couldn't move, and I would unconsciously go to turnover in bed, or reach out an arm to grab something only to suddenly find I couldn't feel let alone move my fingers. These moments didn't happen very often, however; it was as though after the very early initial shock had worn off I had somewhere deep down accepted I could not move and therefore did not bother to try. Instead, for me, the loss and bereavement, the stages of grief I went through were for everything else connected to not being able to walk and move that I seemed to feel.

There are those who are never able to accept this and continue to fight with the idea of never being able to walk again. Often these are people who were previously very physically active, but also they may be eternal optimists. Or just possibly in huge denial. On the other hand it is those who continue to battle for a cure for paralysis that raise hope for us all.

I spent some time reading some research that sums up the initial and long-term impacts for people with SCI quite neatly. It says "long hospital stays with separation from loved ones, altered appearance and attendant identity readjustment, possible stigma, psychological shock and trauma, chronic pain, physical and functional impairment and the need for a long period of physical and emotional healing." The research states SCI patients have similar impacts to burns victims.

Each one of these things in that list just by its self can cause a person to give up because they have no way of dealing with it. So how does a person who ticks every single one of those things off on that list somehow manage to scrape themselves together and carry on? I would have to say in my personal experience it is having a goal, or the will and drive to want to carry on, no matter how small it is compared to the things weighing you down, having that drive, finding a reason to carry on, having that something to cling to, or just simply making the choice to do so because the alternative is worse.

Some days it really is just making The Choice.

Yesterday I had to battle my way through a very busy shopping centre to acquire some new clothes. I had to deal with the onslaught of AB people at every turn, whilst ignoring the stares and the sideways glances, having to suck it up when I would see my reflection in the mirror – having what I would call 'spacky hair', to go with my 'spacky arms', my 'spacky shoulders' causing my coat to sit awkwardly on me and thereby looking even more 'spacky'. My legs sat in a spacky angle, with super-skinny knees growing into flat-fat thighs. Not being able to tell if trousers would fit me because I could not try them on in the changing rooms… And finding my new body shape does not lend itself to smart jackets – at least not if you don't want it to look spacky. My confidence completely drained, and it was all I could do to not turn into a puddle on the floor. I constantly had to take hold of my mental self to fight those negative thoughts and concentrate on the task at hand. I will admit that the shopping trip in my opinion was only partially successful.

So… "Dealing with having An SCI" – to say that it's complex is a bit like saying quantum physics is a tricky subject. And in the beginning, although it's one of THE hardest times you will ever face, and they tell you it'll get easier…what they mean is "you will move on, you will find coping strategies, you will have better days and worse days, you will do things again – but no matter what, it is always going to be difficult from now on in one way or another."

Entry 21: Wandering through Night time...

The other night I could not sleep, which I absolutely hate – I can't move, so I end up just lying there staring at the ceiling trying really hard not to think about things that will end up with me crying. When you're lying on your back and tears are flooding out, they trickle down into your ears and of course I can't move my hands to be able to dry them out. I think, therefore, I've become a master of controlling what I think of. Letting yourself dwell on the negative stuff means you will only get more negativity surrounding your body, heart and soul. And then this will lead to the inevitable Tears in the Ears Tickler. Or even worse – the Super Snot Syndrome… I've mentioned in another blog about the perils of needing to blow one's nose and having to rely on another person to hold the tissue. When it's 2 AM it is not a good time to be dealing with this.

So, instead I ended up thinking about what we're made of. Not body – but the soul, the person, be it the spirit or just chemical synapses in the brain or what have you. Whatever you believe makes up The Person.
This train of thought came about from reading the responses of a number of people, also disabled, who have been told that they are "so inspirational". It was a mixed bag from being completely cheesed off and feeling completely condescended upon, to those who find it reassuring that the Able Bodied out there truly are amazed at the courage and strength it takes just to get up every day and live in this body that we are left with. 

Just what is it that enables those who feel they've had everything taken from them get up each day and carry on?

I suppose it depends on what you're made of. Some days I feel that my Person is made of steel – I am strong, I'll bash down those who stand in my way, I will fight and I will not give in until the battle is won. And then there are days I am made out of Wensleydale cheese, the kind that comes with bits of fruit in it. I will crumble at the slightest pressure, I can be squished and melted down how you want me, but I'll let you and smile in the process (hence the fruity bits).

There are days when I know I am brittle; I will fall into a million pieces. I cannot think, I cannot make a decision, I cannot form a sentence even. Some days I can be like glass shattered, and yes, if you try to help pick me up again I will cut you.

Escapism is one of the major tricks of the trade. Or at least, for me it is. But I will add as a precursor to what I'm about to say that I have used escapism ever since I was a child, disappearing into books and stories and imaginative play, so using escapism to cope with day-to-day life is something I would have done anyway regardless of my injuries. Escapism can take many forms of course. For some it is in the bottom of a bottle of booze, for others it is reading a book, or watching endless episodes of a favourite program. It can be playing a computer game, or even burying one's head in work. Lying there in the middle of the night, in the dark, unable to move, there is no escaping your thoughts. Unless of course you have become a master of them, something I have managed to do over many a year. Being able to take a complete time-out somehow restores the "I will cope today" batteries.

There is a film or TV programme or book out there somewhere (and it will be 50 house points to Gryffindor to whoever can tell me where I got this quote from), where somebody is unable to begin to think how they're going to live the rest of their life, and some wise person tells them that they "Start just by breathing in and out."
I think this is very good advice. It is good advice for anyone who feels they have reached the end of the road and can no longer continue with facing daily life however they are, whatever their situation. I know that I have held onto this very thought. Of course it's a lot more tricky when my asthma flares up, and I am in hospital with a chest full of phlegm, but that's when all my friends have kept me strong – by being strong for me.
Remembering that "Death is so final, whereas life is full of possibilities," (yes, I do believe I'm quoting Tyrion Lannister again from Game of Thrones…). It might be hard to see the possibilities – as one person said "What is there to actually do? Being stuck in a wheelchair can sometimes feel as though you're sat on the couch watching all this amazing stuff on TV." [Paraphrased] The point being that it's all well and good sitting on the sofa watching motocross, or 'Kirsty's home-made Christmas', but you're not actually racing and you're not actually making home-made crafts with your bare hands – you're just sat there watching someone else do it. Well in my experience, where there is a will there is a way. The human spirit is not so easily defeated unless you let it be. if racing is your thing, you can go racing. The trick is working out how. Now, I will never again hold a needle and thread (not that I ever did before!) But what I do know is that if I've got an idea of how I would like something to be e.g. a cushion or the layout of a room, then I can let my inner Tigress out, and become quite The Boss. There's no point holding back any more – if you want something done and you can't do it yourself, then describe and ask someone else politely, and slowly become louder and more aggressive if you're not being heard.

so what is it that I am rambling on about? The human spirit – it will only be defeated if you let it. There are many, many things that can wear it down but it is up to you to find your own personal charger for your "I will cope today" batteries. And if you feed it, nurture that spirit, treat it gently and encourage it – you will be surprised at what you can accomplish. Even when you can't move a muscle.

Entry 20: the London Marathon

it's a very hard thing indeed to try and come up with things to do when you literally cannot do anything (physically). Last week – or was it the week before? Anyway, I posted about being so bored that I put out a plea for ideas. I know that quite a few of you attempted to have a good think but were unable to come up with anything… Not that I was trying to make a point at the time (I was quite literally crying out for help!) But I guess now in hindsight, a point could be made. Which is: spare a thought for all of those people out there who really cannot do anything for themselves, for whatever reason it may be. If you have frail old grandparents who are stuck in front of the TV all day in some nursing home – go visit them. Believe me, they'll be glad of the visit just to break up their day. If somebody can't get to the shops because they just can't walk that far, give them a lift! You get the idea…

I am one of the lucky ones in that I am now in a position where I get a lot of visits from my friends, phone calls from family and have enough computer literacy to occupy my time with the Internet/technology-based things e.g. online radio (thanks B! – She recommended some good stations) and of course kindle for the laptop. I am also of course spending time writing my blog… Amongst other things… But frankly one has to find motivation and it's incredibly difficult when you have nothing to talk about. So – if I have nothing to say, should I therefore not say it and just leave it blank? Entry 20: Nothing. No such luck for you guys! My brain is always wandering about, and can always find something to ponder on :-)

this weekend is the London Marathon. Coming in the wake of what happened in Boston, I have even more respect for the people running. Not only are people running specifically for The Backup Trust and the SIA, but I also have a personal friend who is running for Asthma UK. Oh good grief – my upstairs neighbour's have decided to play Saturday afternoon jazz quite loudly, which has totally wrecked my train of thought!

Okay, where was I? The London Marathon. I think this week I will keep it brief and simple. I'm going to say please support those people running… The Backup Trust have helped me get myself back together through telephone mentoring, the SIA had a peer mentor coming to the unit when I was still in hospital and also ran specific classes helping us to get to grips with "the outside world". My friend who is running for Asthma UK has her own reasons for supporting this charity, but from my personal point of view this charity should be supported because if you have ever struggled to breathe you will know just how scary and how dangerous it is. I have been readmitted to hospital more times than I care to mention because of my asthma, coupled with my tetraplegic. It is literally something that could kill me. That might sound dramatic but believe it or not, it's true. For those who are reading this blog and are not immediately aware of my situation, being tetraplegic means that I cannot use the chest muscles a fully fit person or even a paraplegic might be able to use. I have no cough reflex. Asthma, the tightening of airways due to inflammation and the production of phlegm which also narrows the airways, requires the clearing of this phlegm. Without a cough reflex it's impossible. I literally have to be punched in the stomach… Or in medical circles be given a "Assisted Cough", to help me bring up the gunk. Should bacteria get in there and I'm pretty much on a one-way ticket to pneumonia.

So if I can figure it out, I'm going to leave you with these – the links to those three very fantastic charities, and a you Tube clip that I came across that literally brought tears to my eyes when it comes to supporting your loved ones…

http://www.backuptrust.org.uk/home

http://www.spinal.co.uk/

http://www.asthma.org.uk/

Challenged Yet?

Entry 19: No One Has Nothing to Give

It's amazing how quickly time can fly when you have nothing to do. I wrote in my last blog about being bored. Bored I definitely was, as I really did have nothing to do… And I would say the last week and a half has passed by superfast because I immersed myself in Facebook games, and TV shows (mostly Doctor Who). I completed a very small amount of paperwork, and I was fortunate enough to have a number of good friends come round and fill me in on their life; one or two even kicked me up the backside (as my lovely father would say) in getting on with some stuff that needs doing i.e. phone calls and chasing up stuff.

I have been attempting to get back on the wagon as it were, attempting to go back to work, attempting to get involved in voluntary organisations, attempting to do something worthwhile with my time. It's impressive just how long it takes for any of these things to happen! Interestingly enough, quite a few of the places I volunteered for actually turned me down – they already had enough help. This is a phenomenon I've never come across before… And I can only assume it's because I live in an area where people are generally quite giving their time. I certainly hope it's not because of my disability… Although you never know. One thing I'm concerned about if I do go back to work, and take on these new voluntary roles (the ones I did manage to get involved with) is how on earth I'm going to have time to maintain my games – my farm on Facebook will suffer! My Royal Story and my castle will crumble. I won't be able to see what everyone else is doing, and check-in six or seven times a day on my wall. I have a feeling I might have a Facebook addiction. Hmm.

As a quadriplegic with limited arm movement and hands that do not work, options are limited. I'm very fortunate to live in a time when technology is at such a level that I can control my computer with my voice, and other accessible technology (such as a mouth mouse which you may have seen on previous pictures). I'm able to use a telephone via a "possum" – an assistive technology device that actually can control the telephone, the TV, plug sockets and therefore anything switched into them… In fact there is a whole world of assistive technology out there, it just costs a lot of money. So, being useful as a quadriplegic at my level is a constant quandary for myself. I have become adept at asking others to do things for me. I have developed skills were in my mind I plan out almost military fashion, and then run off a speech to my poor PA of things that need to be done and how. I recognise that my memory is not strongest, therefore I make sure everything is written down in my diary, or on lists on my desktop. But again, this isn't really being useful to others. It's merely "living life" – getting the washing done, cleaning up, sorting out shelves, ordering medication etc. It certainly doesn't give me that much of a sense of purpose.

One interesting thing I've noticed about society is that when people meet each other, one of the very first question is now ask is "so what do you do?" It is a truth universally acknowledged that a person without proper employment will often lack a sense of identity. I still tell people I'm a teacher, even though I have not worked in a classroom for three years now. I know that at my core I am A Teacher. New mothers often feel as though they have become nobody, because they are housewives/home keepers/mummies, and society today still does not recognise that even though this is an unpaid job, it is quite possibly The Most Important job there can be. Though a human being may not be able to move, be it just their legs or their entire body, it is important to remember that they still have something to offer the world. Their experiences, their knowledge, their understanding and perspective… Take Steven Hawking for example. Prime example of a person who cannot move at all, and yet through the power of assistive technology has produced huge volumes of mind-boggling scientific work.

So then. I began today's blog about my boredom and how I dealt with it. I find that as I rambled on my conclusion has somehow become quite a statement in recognising that a person has so much more to give them what the eye might see. This is why you should never believe in first impressions. A person may be disabled – but that doesn't mean they have nothing to offer the world. It also doesn't mean that they are inaccessible, locked in their own body and unapproachable. In fact quite the opposite – it might take longer, it might need money spent on equipment and support, but at the end of the day Every Human Being is important because they have something unique to offer the world. My question is will you pause long enough to find out what that is?