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…