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

Entry 12: Reporting From Under the Duvet…

So this week's blog marks a rather momentous week in the life of one TingleTetra. It comes at a time in the year that is hardest for me, and those closest to me, as it is almost the third anniversary of my injury. However, on a much better and brighter note, after a whole year of marketing, estate agents, solicitors and an army of friends willing to put themselves out for me, I have finally sold my flat. When I was first injured the idea of ever moving back down south was a pipe dream and not even to be thought of. When we finally came around to considering its possibility we looked at all angles of my being able to move back into my home – my first-floor flat in a building with no lifts. Could we have a lift installed? Could we have a ramp built on the outside of the building? Can we adapt the bathroom suitably? Could I even still pay my mortgage?

It was to be sold. I was never moving back, so the flat was to be gotten rid of. The first place I had bought as my own special corner of the world, which was all mine (never mind the bank and key worker housing scheme… We'll not confuse matters by bringing them into it!) – Was no longer accessible. And to this day I have not set foot inside it since I left to go travelling. Fortunately, in those crazy blurred days at the beginning I had already set up the flat to be rented out to tenants, so thinking about putting it on the market was able to go on the backburner. After all, my brain was far more occupied in wondering if I would ever move my right arm again to be bothered about my little flat 300 miles away.

Anyway, three sets of tenants later and the rather stressful period of finding a buyer, when that evil breed of people known as 'estate agents' had allowed my flat to become a mould infested, stink of a place has finally come to an end. Those moments where you wake up all of a sudden at night, stomach knotted in fear that all your plans will fall through and have to start again afresh – those moments will be taken over by something else now. The flat is no longer a concern. And this is a good thing.

As I write this I'm smiling to myself because I have just telephoned each utility company in turn and told them I am no longer the owner of that particular flat and could they please send me a final bill. I was rather impressed to discover I would be getting a cheque sent from the electricity company… Hopefully that will cover all the other bills!

Okay then, so I'm now continuing this two days later when I have had quite possibly the most stressful days of the entire year with regards to selling this bloody flat. Desperate to complete, both buyers and myself, I discover that the key worker housing scheme who "helped" me initially to buy my property has been incredibly difficult, and held up the sale over the last few months, and even now on the day of completion have held up the motions by not forwarding e-mails and documents to my solicitor and so it has to go on until tomorrow. I knew when I bought my flat with them that things would not be straightforward. The key worker scheme is put forward to you to be able to "help key workers who are unable to afford to buy their own homes." What they don't mention are all the extra hidden fees that pop-up left, right and centre throughout both the buying and the selling of the property. In the end it is a total rip-off. And then, let's not forget that they insist on their pound of flesh.

Oh yes… I will admit to you all that TingleTetra is ridiculously bad at maths. Though surely when it comes to such great sums as when dealing with property selling you would have thought I could have at least added it up correctly. Which, until two days ago I thought I had. Again, this paragraph is being written another two days from the last. As I have ended up hiding from the world, mostly under my duvet, due to the incredible stress of discovering that not only do the key worker housing scheme want me to pay admin fees, their solicitors fees as well as having had me pay not once but twice for a valuation (which, frankly, any estate agent would do for free!) Oh no. This key worker housing association insisted I pay nearly £100 for a valuation done by an estate agent of their choice that would only be valid for only three months. As the sale took nearly 6 months to go from offer to completion… Again, I strongly suspect it was the key worker housing association that held up the proceeds… Two valuations were needed!

Apologies, I digress. After my first mortgage was cleared (woo hoo!), I then needed this key worker housing scheme to release their own charge on the property after I have returned to them their initial 18.5% investment. Which they have not done as of yet. So the new current owners will probably take action against me. They have not released their charge because I cannot pay back all of the 18.5 %. Apparently I did my sums wrong. Negative Equity big-time.

The really ridiculous thing is that this key worker housing scheme would not allow me to rent out the property, thereby saving me from this hideous situation! They allowed it only for a short period of time (for a fee, of course!), even though they knew of my exceptional circumstances. They insisted I put it on the market. And now I owe them a ton of money. Surely this can't be right…? Surely somewhere along the line it can't even be legal…?? So that knot in my stomach I mentioned several days and paragraphs ago that was going to be replaced by something else, it is now tripled in size and my duvet is my best friend. 

Oh, and three years yesterday I broke my neck.

Entry 11: Infiltration Complete

Tetra b-log, Star Date: 15022013.

 Assimilation into native surroundings has so far been successful. It has not been an easy journey and it would be a lie to say I'm not still adjusting. However, the native humanoids have been incredibly supportive at my designated infiltration point. My general observations have led me to believe that these humanoids are actually very compassionate. They carry a level of empathy (granted it is at differing amounts) which allows them to perceive some of the difficulties I must deal with adjusting to their world.

The difficulties described in the original brief have been faced and your advice was invaluable. I have stuck very closely to the team sent with me to enable my every-day functionality and has allowed my further development towards maintaining a reasonable standard of living here on this planet.

Due to the differing physical abilities that separate our species, I have found it difficult to initiate a work and recreational regime. Although I have put myself forward to many organisations, offering my services free of charge in many cases, there is often unwillingness to receive my help. The native humanoids are very suspicious of where I come from and what I'm capable of, and therefore run extensive diagnostics upon my person and background. This has taken a lot longer than expected and I have grown accustomed to having a lot of free time. Whilst this might sound pleasant, the long-term effects of this upon my mind and body have been adverse. My tolerance of noise is not what it used to be, I am no longer able to concentrate for long periods of time, and my memory has suffered. There is nothing to mark out the days as different and so therefore I end up forgetting what day it is. Much like the muscles that are no longer of use in my legs and body, I fear that my brain has also atrophied.

It appears that the natives gain respect and self-esteem as well as vital "money" for survival through employment. I am attempting to gain such employment but for the aforementioned reasons, it is taking much longer than expected.

There is a system already in place here that would suggest I am not the first of my kind to have arrived here. There are specially trained locals who interact with me frequently, and who have a greater grasp of my necessities than the general populace. They even have methods of supplying me with equipment that makes my life here bearable, and at times can even increase my comfort. Without wanting to put myself in a position where I am an object of study, I have made inroads with these native humanoids towards helping my body adjust to this planet's atmospheric conditions. They wish to put me on a course of "hydrotherapy" involving immersing my body in very warm water and move my limbs in various ways. Apparently this may lead to a significant reduction in the amount of spasms suffered and a general improvement in the muscle tone throughout the rest of the body.

A few weeks after arrival I contracted a local bacterial infection that immediately affected my lungs. Upon your advice that our lungs are not designed to efficiently take in oxygen on this planet, I immediately sought medical advice from my team and the local humanoids. Although the episode was greatly unpleasant for myself, as I was in great pain and I will admit I was scared of how little I could breathe, the overall outcome is one of success. They placed me in one of their "hospitals" were more of these 'specially trained' locals were able to administer medicine, and use specialised equipment to loosen the phlegm on my chest that the bacteria had produced. A collaboration between myself, my team, and the natives led to my healing.

I believe that further collaboration, clear communication and a willingness to understand on both sides should lead to a successful full integration in the long-term. I shall continue to report on my further discoveries of life on this planet.

Entry 10: The Week That Was…

Monday

(Photograph stolen from Wikipedia)

I did not sleep very well last night. I've become a bit of an addict of the program Fringe, and watching five episodes back-to-back does not create a good mental state prepared for sleep. This morning I had to face dealing with something I had been putting off for well over a week… The ongoing saga of claiming compensation for my injuries and accident. I'd had all the info sent to me, and reading through it is somewhat taxing, and always raises up a highly emotional state in me. I could not eat breakfast. Nor lunch. I want to move forward, psychologically, emotionally, and literally in my life but dealing with the compensation claim takes me right back to 3 years ago and the huge life destroying incident that ruined so much of my present and future, and robbed my family, friends, and myself of so much.

Thank goodness for fresh air and massage therapists! I managed to get out for a little bit, get a change of scenery and then later on in the afternoon I had my first massage session. I'm paralysed from the mid chest down, so I hold all my body tension in my shoulders, neck and upper arms. I have struggled for three years now with pain in my muscles and tendons and nerves in this region and I get a lot of trigger points/knots that just cause deep aches I have no way of shifting. On the advice of my cousin, a physiotherapist*, I decided to invest in myself and employ a regular masseuse who is trained in deep tissue massage. Best New Year's resolution ever.
*http://www.thephysiotherapycentre.com


Tuesday
Today I have been battling with a very serious conundrum: how am I going to re-highlight my hair. Shocking revelation, so brace yourselves - I'm not a natural blonde. Or rather I am blonde, just not as blonde as I like to appear :-). I cannot go to a regular salon, because I cannot transfer into the chair that is bolted to the floor in front of the sinks… And so washing out the hair dye is an impossibility. In fact, it is the primary problem - even at home, if a mobile hairdresser were to highlight my hair, I would have to sit in my shower chair, and then once it is washed out, I would end up getting soaked and would need to be hoisted onto the bed to get changed… Or at least I would need to be hoisted into my wheelchair because the shower chair would be wet. I don't particularly want to be hoisted in front of a stranger… And it's a bit bizarre sending them out into the kitchen to hang about whilst I get sorted.

A friend of mine who is training to be a hairdresser came around this afternoon to give my hair a much needed trim (the ends were so damaged you'd think I'd dipped them in actual Domestos). I was horrified when she suggested that I return to my Natural Colour. Now not sure if friendship is worth maintaining… Natural colour, indeed!*Scoffs*

This might seem like a real stupid thing to be blogging about but actually it is quite serious - my appearance has completely changed since becoming quadriplegic. Every woman has parts of her body she dislikes and occasionally there are even parts that she likes. For me it was my hair that I liked, the rest I would have happily swapped. And maybe my feet… I quite liked those too. Given that I'm now constantly wearing a wheelchair, have a Tetra-slump hiding any kind of waistline I might have had, and of course, let's not forget the scar from my tracheostomy, I don't exactly feel very confident about my appearance. I never had much confidence anyway, and now I don't think I will ever feel attractive again. The only thing that could give me confidence would be my hair. After all, it is probably the only thing that has not changed or been affected by my injury. So dammit, I want to get my roots done, and highlight it properly! Anyone with any solution to this conundrum, Please do message me!

Wednesday
Okay, I've been umming and ah-ing whether to mention this… But as I decided that this week I would give an open and frank window into a general week in the life of tetraplegia I may as well talk about it. 
Have you ever wet yourself in public? Can you even remember the last time you wet yourself? Exactly how embarrassed would you be? How would you deal with it? Well, as I have no feeling, or control of my body from the mid chest down I therefore have to 'manage' my bodily systems. 

I was out with a friend having coffee, when I look down and noticed that my foot-plate is wet. I realise that one of my boots is a lot darker than the other. It is not the first time and I can almost guarantee it won't be the last time when my leg bag for some reason, has opened and leaked urine. Not only is my sock soaked but my boot had absorbed quite a large amount too. Kudos to my amazing friend who totally did not make a big deal out of it; she put her baby son in his pram and just as if it were an everyday occurrence we went into the loos and sorted it out. I doubt any of the other customers realised what was going on, although when I crashed into one of the wooden posts and knocked it off its plinth… I think I might have drawn some attention…

Following that drama I then had – Another Trip to the Opticians… I really didn't trust the first guys who did my contact lens assessment, so I made another appointment at a very well-known pharmaceutical/opticians that is named after a type of shoe. Turns out I really am getting longsighted! Well actually, that's a bit of an overstatement - I'm so shortsighted that it is known as a "complex prescription" and eligible for the NHS to contribute to any glasses I buy. But it would seem that due to my age I am now less shortsighted than I once was.… If this keeps continuing then hopefully by the time I reach 50 I won't need glasses at all!

To recover from what has been quite a stressful day I have some Quality Time with a good friend of mine and her two rather large dogs. As I'd been transferred out of my wheelchair and was sat like a Lady Muck on my comfy pink sofa chair, buried under my duvet, I was unable to go for a walk with them and get some much-needed fresh air! So instead they came to mine, and I was greeted by one of the dogs happily jumping onto my lap and giving my face a thorough clean with added "dog snogs." Now I know I said I miss snogging… But I'm not as desperate as that yet!

Thursday
Tetra-Morning today, so got up a little bit earlier to take care of certain personal needs. And that's all I'm going to say about that! 

I'm actually writing this on Friday morning, because I'm such a lazy moo that I couldn't be bothered finishing off last night. I mean, what should I tell you about today? (Thursday I mean, not Friday!). 

Following my Tetra morning, I had lunch out with some friends. Fortunately it was sunny weather, and quite warm. That meant that once the flat was tidy, I went through my post, with the aid of my PA, and then she helped me put my shoes on, helped put my coat on, and then she helped put my hat on and I went outside. I trundled along the pavement to where there is a dropped curb and then I trundled back along the road towards where my vehicle is parked. My PA aided me to get in the car, and bracketed me down, making sure my wheelchair won't move and then off we went to meet my friends.

If I'm trying to share with you something of "life in a chair", then the above little description of preparing to leave the house gives a small, tiny taster of what it's like. I am truly blessed with some amazing friends who frankly have rolled with the punches as it were, with my accident and adjusted to my new way of being. We were having chips in a pub that my friends had chosen specifically for its accessibility.

Friday

(SA Home Loans's photo)

I spent the morning sat in front of my laptop, editing this post. I actually really need to tackle a pile of paperwork that I keep ignoring. It means my PA and I need to make phone calls and write letters and organise post office trips and get out all my files so we can put paperwork away. Frankly, I'd rather play Farmville on Facebook! Having reread my week so far, I have become very aware of how many friends I have seen… And how they have really and truly just "gotten on with it." I know for many of them dealing with my tetraplegia has been quite hard to accept - and yet I am so fortunate, that they have still accepted me and gone beyond that to helping me and adjusted the way they do things so that I can be included.

Okay, so I got on with my paperwork and make phone calls. I'm sure this is making a riveting read! 

With the aid of my PA, I went through papers on benefits, solicitor details on selling my flat, papers from solicitors for my compensation claim, application forms to Canine Partners, finding paper with an old address on it to prove where I used to live… 

Making phone calls were my PA would have to dial the numbers and occasionally even have to "press one should this be your choice or press two If that is your choice," blah, blah. And then of course there is all the filing. I promise myself one day that I'm going to shred all my old paperwork from being at the spinal unit and from living in Liverpool, just as a way of updating myself. However, I have recently applied for a CRB and because I didn't throw away old papers I actually had evidence of where I used to live… Some people I'm sure find it really easy delegating, and putting work onto other people. In fact that kind of sounds like what most people would want to do - so maybe it's just the way my brain works, but I would far rather be able to flit about here and do a bit on that piece and then flit about there and do a bit on that. Unfortunately this makes it very hard for the person working with me to follow my train of thought. Not only am I thinking of what it is I'm actually doing, but I have to think about the other person and how they are going to accomplish what it is that I'm doing. Does that really sound bizarre and does it even make any sense? I'm not even sure myself!

Anyway, I gave us both a break and went out for a little walk, sorry, roll around the estate to get some fresh air and get away from this blasted laptop that I seem to spend 95% of my time in front of. Fortunately this time we remembered to charge my chair up!
And now I'm back in front of my laptop. Blogging to you lovely people :-)