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?

Entry 18: Bored Beyond Belief

Apologies for the lateness of this week's blog. I've been trying to think of what I should be writing about. When you have nothing to tell anyone because you've not done anything, what do you then write about? Boredom. The ever ongoing lack of interest in doing anything or even having something to do. The ever ongoing ennui that comes from doing the same thing every day.

Okay, so that's what I'll write about. If you are unfortunate enough to have a personality or mind that tends towards not pushing forward, have changing/developing interests, or does not see chances or opportunities laid in front of you, if you're the sort of person who gets "stuck in a rut" easily… and let's face it the emotional, spiritual and physical strength it takes to deal with having an SCI can be so draining that the thought of putting energy towards anything more challenging than playing Angry Birds for several hours a day is just impossible. It is not surprising that boredom and depression are very closely linked and one can quickly lead to the other if not checked.

After having gotten away with it for several months now, I am now back in bed with a pressure sore on my backside. This means I cannot be in my wheelchair or in fact any chair because I must not put pressure on that area until it healed. So, what to do when in bed…

1. Stare at the ceiling

2. Scour the Internet, mostly stalking people on Facebook or going into the forums and chat rooms

3. Play games on the Internet (my sincere apologies to all my friends on Facebook who keep getting things linked to the games I play on their news wall.)

4. Consider being productive – the question is "how?"

5. Deal with paperwork… There is always more paperwork to be getting on with when you have some kind of disability. Or in fact, any kind of life! Bills, appointments, solicitors, banking, filing, benefits, application forms Re: benefits or housing or proof of disability or adaptive equipment or adaptive services…

6. Ignore Option 5 completely as it is far too boring to face, and demands far too much brain energy and facing of reality. Instead, write e-mails to friends.

7. Exercise. That's right, I said "Exercise". For those not in the know, you are at greater risk of developing DVT if you are in bed and not moving (not too dissimilar to being stuck on an aeroplane for hours and again, not moving. Oooh, just realised DVT is linked to lack of movement/circulation. It's only taken me 3 1/2 years to realise this… I am so sharp!)

8. Read a book.

9. Write a book.

10. Watch TV.

 Pretty much everything I've written on that list bores me silly. Reading a book possibly will help to take me away from this place of confinement and into another reality. As would watching TV. Neither are however, productive in the least. Good ways of passing the time though… And as Tyrion Lannister once said in a Game of Thrones – "A mind needs a book like a sword needs a whetstone." But I suppose that depends on the book…

Okay then. In my ever ongoing attempt to get feedback and comments I would ask for any help on what I could do whilst spending time stuck in bed. My challenge to you, dear readers, is to suggest far more interesting things that I could be doing – ideally things that productive! (I do not have use of my hands remember!) :-) You can always leave comments below, or if you are having difficulties with that e-mail me or contact me on twitter –@TingleTetra.

Highly Amused by the number of readers– I know you're out there, and yet still are you not brave enough to suggest anything to help break up this poor girl's boredom? Surely my list of 10 items is not all there is I could do whilst stuck in bed?
Perhaps this will amuse you – a serious case of Bed Head! I know that it certainly amused me :-)

Any 1980s soft rock metal band (circa Bon Jovi 'Slippery When Wet') would kill for this hair! I'm only three decades late…

Entry 17: #LifecontinuesafterSCI

There are a few things that happen in life which can completely capsize your world. Continuing on from my last entry, which I hope perhaps gave some idea of what I mean when I say "capsize your world", I wanted to show that it is not all doom and gloom. I know that having children can turn your world upside down completely, having observed through a brief window how my friends have taken to parenthood. Life is never the same again. This is true of suffering from an SCI. I deliberately say suffering, although it may sound very "woe is me", because life is not made better by having one – unlike having children which is considered a blessing (most of the time!). However, I recently tweeted about some training I went on with The Backup Trust, and I used the hash tag of 'life continues after SCI.' It got me thinking about the fact that yes, life does continue whether you want to admit it or not, day in day out, life is passing you by. Or as John Lennon said:

I can't believe I am now in my fourth year of having this injury. It's just over three years and one month. And yes, my life has continued. I have continued with my friendships and relationships, spending time with my family going places and doing things with them. Craft fairs, cinema, getting blotto in the pub, shopping, eating out, visiting the seaside and more. Creating more memories that I will treasure in the years to come. I was fortunate to be able to have a puppy that I raised to adolescence… Before having to move him on to a more suitable home. The time I spent with him enabled my confidence to grow, my independence was able to re-emerge, and it's always nice to not be the only one in the household to have 'accidents'.

Moving house, relocating from one city to another takes a hell of a lot of planning, coordination, and teamwork. Making steps towards returning to work. Developing my body strength and stamina.

And that is just me. I wanted to give you guys an idea of the fact that life does continue after an SCI, and for those people who are reading this who are disabled or are in a similar situation as me I want to show what can be done. I've had a good look on YouTube, and I found some clips that I think will astound and impress you, because they certainly did me! We often get so bogged down with what we cannot do, that it can be very hard to realise there are things we are still able to achieve…

(the beginning of this video has quite a bit of chat – it is 10 min long, I would recommend watching it all – just to get a sense of the context, although the reason it's on here is to show the scuba diving wheelchair warrior!)

This is Tiffany Carlson– she is a writer and blogger and is in all sorts of magazines and websites. She is the owner of beautyability.com, and believe me her words of wisdom are well worth listening to!

depending on your ability and rehab, it is possible to get back behind the wheel! It may take a lot of work and strength training and stamina. You may need to pass another test. But at the end of the day the old adage is true – where there is a will there is a way.

and let's not forget Murder Ball a.k.a. wheelchair rugby… Primarily played by quadriplegics. If you can get a chance get hold of the film "Murder Ball" and see how it all started. of course, this is not the only sport you can get into – people in wheelchairs are still able to play more or less just about any other sport, go horseriding, skiing, and swimming. I won't start rattling on about the merits of taking part in exercise and sport for your health both mental and physical… We all know that it's better for you whether you're in a chair or not!

If you are disabled and reading this, I would greatly appreciate any comments (either by e-mail or the comments box below) that can add to the list of achievements and possibilities that are out there for people to realise that yes life does continue after SCI. 
The only limitations are the ones you put on yourself.

PS it's come to my attention that people want to leave comments, but can't due to not being signed up to Google. If you would like to leave a comment, then please e-mail it to me, stating whether it is anonymous or not, at the the address at the very top of the screen – TingleTetra@Gmail.com, and I will add it. :-)

Twitter: @Tingletetra

Entry 16

I used to think I could empathise. I used to think I knew. I used to think "I've had pain in my life, I can therefore relate". I used to try to be nonjudgemental. I used to do "My bit". I used to try to understand,
to walk a mile in the other's shoes. I used to think my prayers were heard. I thought my prayers were answered. I used to think I could help. I used to think I did some good. I knew I couldn't know how another person felt, but now I know it's impossible.

When I think back to how I saw people in wheelchairs, disabled people, people who have had their lives touched by some debilitating disease… I was such a fool. A self-righteous, assuming, selfish, narcissistic idiot who knew nothing. Nothing at all. I had grown up knowing mentally disabled and physically disabled people. I had worked for years with disabled people, those with both physical and mental challenges. Done voluntary work. Read books. Attended courses. Heard of other people's woes. Saw the adverts on TV begging to raise money that could cure, help, in any way improve the quality of life for whom they supported. I never gave. I had chosen my charities, I was doing my part already. You can't give to everyone.

There is a web which is spun that is as complicated as the nervous system and just as hard to navigate. The Web of Impact that stretches beyond what the eye can see, beyond what the ear can hear, beyond what the mind can understand, beyond what the heart can feel, beyond what the stomach can hold down. The web is spun in a continuous spiral with links, known and unknown starting from birth, and stretching out across the span of time. Each fine thread is so delicate, to be nurtured, to be admired and valued; its beauty, its strength, its radiance. Not to be wasted. The time spent creating it is the cost. The energy spent, the focus, the emotion invested. When Impact strikes the whole web is shook, no matter where the spider lays in wait, she will feel it nonetheless. There is no escaping the impact.

How could I possibly know? There is no way to know, unless you've been there yourself.

Unless it's you, your mother, your father, your lover, your best friend. You can't give to everyone and there are too many ways the human body can suffer. There are too many ways the human mind can shut down. Too many ways the human heart can give up. And the soul – what of the soul? Strong enough and the soul can be the driving force behind a complete restoration. But if it is weak, from pain and suffering and battles, another go on the merry-go-round and from sheer lack of willpower, the soul will quietly drift away. I was so arrogant. I looked my mother in the eyes and told her I was going to be perfectly fine, literally I said "nothing is going to happen!". It could never be me. So sure was I, so certain of the path that lay ahead of me. The direction my life was to take.

You never know what's round the next corner. I'd heard that line so many times that each new time I wanted to hit the person speaking. Of course, that was the context when people were trying to help me be patient; I wanted to fall in love and I'm still waiting. But you never know who's round the next corner…! If somebody had told me, had they warned me of the speeding minibus that would flip over three times around my next corner I wonder if I'd have given it any consideration at all. To be honest I think I would have still boarded my plane. I was that arrogant and held the assumption that I would be protected by a higher force. It could never happen to me.

And then the web springs into action. Letters of support, cards of condolence, visits with ice cream, and photographs, presents, piles of chocolate. I have no idea of the depth and breadth of pain my injury has caused to those people who are in my life. I had no idea simply of the depth and breadth of people who were in my life at all. Of the vast number who cared, even people I didn't know reached out to me. And I didn't deserve any of it. The suffering caused by my injury is beyond what I can imagine. I used to think I could empathise, I used to think I knew.

I now know that it was fruitless to bother thinking this way at all. I could not possibly comprehend what this hell is for another person; it is bad enough for myself. I sit at the centre of my web seeing how my injury has tested, shaken and torn my delicate threads apart. How life has rapidly unspun. Watching the actions and reactions, the vibes that come back at me, and the way the knocks keep coming. Any repairs are just patch jobs.

The web will never be like it was before. It is not just my body that is changed forever, nor just my life style, it is not just my heart that is broken and it is not just my life any more.

Entry 15: The Alternative…

Today I'm finally getting my hair done! Goodbye ugly roots, hello lovely highlights!

Roll. Sling. Hoist. Chair. Sling out. Coffee. Computer. Poo. Sling in. Hoist. Bed. Bra. T-shirt. Pants. Trousers. Roll. Sling out. Duvet. Sit up. Med's. Computer. Coffee. Lie down. Duvet off. Roll. Sling in. Hoist. Chair. Hair.

Hoist. Bed. Remove trousers. Remove pants. Remove T-shirt. Remove bra. Hoist. Chair. Sling out. Shower. Towels. Sling in. Hoist. Bed. Roll. Sling out. Bra. T-shirt. Pants. Trousers. Roll. Sling in. Hoist. Power chair. Dry hair.

It's a bit odd, because it's all backwards. The hairdresser came round two days ago and cut my hair. Now he's coming back today to highlight it. For those who have absolutely no idea of what goes on in the salon, you usually have your highlights done, then hair washed, then cut and dry.

Extensive research on my part (having peeped through the window of several hairdressers both in Liverpool and my current town) has shown that accessing a salon is near impossible for me. Certainly for what I want done, as every single hairdressers has their seats bolted to the floor by the sinks. And I have no way of transferring from my power chair to one of these fancy chairs to have my hair washed. So, we are having to be creative at home.

Hmm. The day didn't pan out quite how I described it earlier, but I'm very pleased with the results anyway!

and the cheesiest grin award goes to…

(PS it's come to my attention that people want to leave comments, but can't due to not being signed up to Google. If you would like to leave a comment, then please e-mail it to me, stating whether it is anonymous or not, at the the address at the very top of the screen – TingleTetra@Gmail.com, and I will add it. :-) )

Follow Me on Twitter: @TingleTetra

Entry 14: Dangerous Doorways

It was a very interesting week with doors. Now, in my little flat I have just about managed to learn to get through the narrower doorways with a twitch of my wrist and closely watching the positioning of my footplate and an armrest. Though I will admit there is no paint left on the woodframe from when I was practising! Women drivers everywhere have got a bad press; there are some fantastic female drivers out there… Not that I was one of them. Now that I'm in a chair though, and I have to drive it constantly, I would say I'm actually pretty good.

Photograph courtesy of Misha!

Given the lack of finger control/movement/sensation, the minute wrist action, the degraded muscles in my forearm and my dodgy tricep (ooo, and let's not leave out the random spasms that takeover completely from time to time) I would say I do a pretty good job. However, doorways are not designed for people in wheelchairs, especially given that nearly all are raised up on a step or even worse, a step and then a PVC frame that has two lips to get over. And unless a doorway was built back in the Tudor era or was built specifically for tiny people it's fairly safe to say that I can get through it, as long as I have no need to turn – bring in the turning circle and all of a sudden we're dealing with a different ballgame. The problems come when trying to get up that step and over the lip.

So, at my widest I am 66 cm. I don't know what the average width of the human being is but I think the widest point is at the shoulders. Having just googled it, I discovered the average width for a male is between 18 to 20 inches or 50 cm across the shoulders. So really I'm not actually that much wider than the average human male. Most people assume that I am incredibly wide, and granted I am wider than the norm. However, I am not a tank. It may appear that I am. But I'm not. I'm only 66 cm wide. That's 26 inches, just on 2 feet, two thirds of a metre, 0.7 yards, or 0.00066 kilometres. Not that wide at all really!

(example of ramp with small turning circle at the top)

Saturday I was showing some family members the sights and sounds of Bognor Regis. All we wanted was a place to get a hot drink and a sandwich. We parked at one end of the promenade and walked all the way up to the pier and back. Either the cafes were closed or there was no way I could get into them because of their HUGE FRONT STEPS. Eventually we found a pub that has a really lovely ramp. Wahey! Problem solved! But then at the door, we realised it was one of those funny ones where you open the first door and then it has a sharp right turn into the building itself. Turning circles need wider space. By this point we were so cold and I was a bit P'd off, that there was absolutely no chance I was not getting through that doorway. So, full speed ahead, I left a nice lovely thick groove in the wooden frame with a great crunching sound that had the barmaid running up to help and all the locals watching in amusement. As soon as we were all in, that's when we discovered they were not serving food…Grrr. We were shown out via a fire exit.

A threshold ramp would have been useful at this point!

Monday my mum and I decided we wanted a fish and chip supper, and as there is a brand-new chippy just around the corner we thought we'd try out. Arriving outside, we notice the doorway is already open, but yes, there is a little step. This time I don't really think anything of it because I have a "curb climber" on my chair which can normally deal with small steps quite easily. Unfortunately, whilst going over this threshold I managed to separate a wooden plinth from the front of the step. (I forgot to mention earlier that my wheelchair weighs over 95 kg, not including me! For you Brits out there that's almost 15 stone) The customers inside are doing a fabulous job of pretending not to stare… But all praise to the staff who immediately came to help and actually found it rather amusing. Apparently the step is being altered anyway, and that wooden plinth now serves as a mini ramp. Awesome! I broke the step and made it better!

Thursday was a shopping trip and visit to friends over in Southampton. By the time I reached my friends house both my PA and I were knackered from the shopping and driving through traffic. On arrival, the first thing my friends say is "have you got a ramp?" Which, bearing in mind I've had a car now for almost a year and been in this chair for over a year, you'd think I'd have actually gotten around to getting. No, I do not have a ramp. My bad.

not actual doorway, but to give an idea of PVC double lip.

I had not visited this friend's house before, and had been reliably informed by other friends that it had flat access. The flat access turned out to be a 10 inch step with an added PVC frame double lip. And it was raining. Why oh why can I not be more organised?! Very fortunately my friends live in an amazing house with grounds and were able to find two planks of wood that I could roll up to get in. Getting out was a bit more interesting as it had continued to rain on the planks of wood and they were now really slippery. Up over the lip and onto the wet wood and my front castors slid straight off. All praise due to my friends and PA who quickly grabbed hold of my chair (probably almost giving themselves a hernia in the process) to stop me completely tipping out and breaking both the chair and myself in the process.

So, the moral of this week's "attempting to share life from a chair" would be:

   
  Buy a portable ramp. If you're in a wheelchair, you're gonna need one.

     

PS it's come to my attention that people want to leave comments, but can't due to not being signed up to Google. If you would like to leave a comment, then please e-mail it to me, stating whether it is anonymous or not, at the the address at the very top of the screen – TingleTetra@Gmail.com, and I will add it. :-)

Entry 13: laughter is the best medicine, so they say…

Okay, so my last blog was pretty dismal and made for some heavy reading. For those who are at all interested in an update on how things are going:
the key worker housing association have waived the outstanding balance on their investment. (*Cue some jumping up and down and screaming with relief) My solicitors also waived their fee because there was no money left at all. In their words, "we just want to shut this case." – I guess it was starting to irritate them! So, it is as though somebody's waved a magic wand over my horrendous problem, and made it all disappear… Thank God!
so, the rest of the blog is as it was before… But this time I'm able to smile feeling a hell of a lot better than I did last week. Enjoy!

it would seem that currently everyday is full of these moments!

Now, one of the things I have wanted to talk about is the amazing fortune of having a) a laptop b) Internet connection and c) Facebook friends that send me very funny things. One of the many things that comes with life as a para or tetraplegic is a lot of time in bed. This could be for any number of reasons that are mostly health-related, and can also be because of depression or anxiety (which is my usual excuse). I've partly put this blog together to entertain any of my fellow SCI guys who were stuck in bed…I really cannot imagine what life would have been like as a tetraplegic without the Internet. 

Having had this amazing tool I have been able to gain back independence on so many levels – from being able to communicate with my friends privately, to completing my personal banking and possibly most importantly of all, being able to find a community of other people in the same situations as me who are able to swap notes on just about anything SCI related. Without wanting to shortchange people who have shown a great deal of empathy for my situation/condition, it is very true that  Nobody (and I use the capital N specifically) really understands or appreciates what it's like living with an SCI unless they have one themselves.

Anyway, this week's blog is actually meant to share some of the things that during last week's Hell actually made me smile and even laugh properly at times. Now I will try and put in the source wherever I can, but I will admit a lot of it came to me through Facebook. The first thing I wish to add is this:

https://www.facebook.com/the70s80s90spage

It is remarkable just how this description actually fits my childhood!! And there I was thinking it was just me, but it would seem there were many others who were of and around my age also going through the same… er… Developmental Process! Parenting skills and attitudes have clearly changed over the years…and as for computers and mobile phones, they were still the stuff of "Back to the Future". It genuinely made me smile remembering Baywatch and Gladiators… And good old Cilla Black and Blind Date! I can even remember getting a bollocking off my parents for coming in too late – yes, it was after dark! So, for anyone reading, who is not in Britain (yes, dear readers, my audience is now global!) this is a taste of Britain's culture for those of us who are now in our early 30s from back when we were in our preteens :-)

The next thing I would like to share with you genuinely made me laugh. It's a video that went viral, and I immediately shared it with everyone else I knew on Facebook. Quite possibly a large number of people already reading this have watched it once before through my sharing… But I don't care. This week's blog is about things which amused me during a particularly crap time and I would like to pay homage. Note to self – I must stop using the word 'homage':

Stolen from DJ… For teachers everywhere

I know that there are many guys out there who are bed ridden or housebound which frankly absolutely sucks. Especially if you don't have that many friends or family who will call round and take your mind off stuff. There are hours and hours to fill in a day when you don't have a job, or you have nothing to do because you cannot use your hands or your feet and in some cases, you can't even breathe for yourself…. It's bad enough having to live life by another persons rules; I know some teachers find it really irritating having to have their lives dictated by bells, but that's the rhythm of the school. Imagine if the rhythm of your breathing was controlled by a machine. Granted, thanks to that machine you are able to live, but still you cannot control when you breathe in and out. Why am I rambling on about these things? I think because I want all the AB people out there to realise the enormity of what it's like living a full and satisfying life, to then having what feels like a life that is empty – you are no longer doing things, it is other people, or even machines that do things for you. There are so many personal things, for instance, men – presumably you usually shave your own chin? Ladies, who put's in your tampons? Get my point? So on that note, it brings me to another Very Amusing video. This one is definitely one for the ladies, and any gay men out there :-) 

And then of course there is the flurry of photographs, and "statements" that are going around and are quite popular at the moment. As a Led Zep fan, this rather amused me:

and in honour of my mother coming to visit this weekend:

Mum, I've got your bottle of medium dry chilling. After all it's the least I could do!

Okay, so last but definitely not least is a video that had me chuckling from start to finish. I read a piece on a certain sheriff in the US who keeps getting re-elected because he's really clamped down on convicts and the jail that he runs. Instead of costing the taxpayer loads of money by building a new jail, he instead designed one out of tents. Apparently one of the inmates was overheard complaining about the heat that they were having to suffer, and the sheriff's response was that the Army out in Iraq was suffering in the same heat if not hotter, laying down their lives for their country. Now, I don't know how much of that is true but what I do know is that they certainly haven't lost their sense of humour (the military that is, not the convicts!). And here's a video to prove why:

 There might be a little bit of the theme going on with having seminaked men all over my blog this week – but hey a girl has to do something to cheer herself up :-)

I hope I've been able to make some of you guys smile today too x