Entry 9: Snow and battery failure

(photograph courtesy of DJ) 

It's been a bit of a strange week, and I've been really struggling with coming up with this week's blog. It's probably because I had loads of plans that then got cancelled, with me being stuck indoors for many a day due to loads of snow and ice, low temperatures and a rather healthy level of fear of catching pneumonia again. I've been watching on Facebook as people uploaded their photos of the fun and frolics they've been having, making snowmen and snow angels and throwing snowballs at one another. Whilst being joyful at not having to actually leave the house to do anything, I also felt like I'm literally watching life pass me by through my window, especially as I only had one visitor the entire time. It made me a lot more aware of people who really are stuck indoors all year round who don't have anyone around them to support, and no way of connecting with people. Particularly the elderly and frail. Unfortunately this only served to make me chomp at the bit even more to get out the house, so that I could go around and visit people that I was worried about when I myself should actually not be leaving the house.

Oh, I am just so sexy in those specs!

Fortunately, by the time I really did need to go out for yet another eye appointment, the snow had mostly melted. I still however, had to succumb to the rather degrading blanket across the knees as it was sleeting, and the temperature was around 0°. I felt like a right old bag! These days I'm quite accomplished at swallowing the lump of pride that rises in my throat when I have to deal with embarrassing/undignified situations that being quadriplegic leads to. I'm always aware of it, though. Some days I choke over it, and other days it goes down as easy as a Flake desert. But it's still there.

Getting out was really refreshing and I decided that now there was no snow I really should make more of an effort. After all, why should I let a bit of frozen water stop me from getting out and about? Other disabled people don't! I know paraplegics, whilst probably not exactly relishing the thought of wheeling through snow, still would be getting on with their life, and frankly, with the right sort of power chair, there's no need to quibble at a little bit of snow. I probably did my body and chest a disservice, and insisted on going out the following day to walk a friend's dog, and then pop in on someone else for a cup of tea. Alas, I had failed to take in to consideration the battery on my chair. Because I'd been indoors for five days on the slowest setting, I'd not needed to charge it up and therefore halfway through walking the dog it became very apparent that if we did not make a pit stop and charge me up, we would not be finishing the walk at all.

Unfortunately, even with the pitstop my chair battery did not survive the journey round and on the way back I slowly came to a grinding halt. I'm just glad I managed to cross the road first! So, another mini adventure, not dissimilar to the one mentioned in my previous blog, although this time I'm not stuck in mud – I'm simply out of power. I ended up having a very nice gentleman who could see I was in dire circumstances push me back the rest of the way… Luckily it was just round the corner and not too far. This power chair ain't exactly light! I can practically hear my mother groaning at my stupidity, 300 miles away… Sorry Mum!

Entry 8: Bingley, Briefs And Missing Snogging.

This is Bingley. I bought him as an eight week-old pup, who appeared at first very shy and very scared of the world around him. A bit like I was, following my accident I suppose. Bingley was brilliant. He totally bought me out of my shell as I attempted to bring him out of his… Although it wasn't long before he was pretty much in charge of the household!

Oh yes, Bingley ended up with all kinds of names as we helped him learn to house train, and teach him his basic skills and manners. I suppose the main thing I have to be grateful to Bingley for is getting me out of the house. You see, being Miss Independent I would go anywhere and do pretty much anything that I wanted, with very little thought to other people. I was pretty selfish (and still am I suppose). But following my accident. I was in a manual chair for a good year or more. In fact, thinking about it, it must have been two years or so I was in a manual chair where I could not go anywhere without another person pushing me. That meant I could not face the direction I wanted to, change my position in the room, change the room, or just pop out… It was so limiting it's hard to describe. Anyway, I kind of got into the groove of not being able to move myself around, and this habit stuck after I got my power chair. I was lacking in confidence too – I had not been outside on my own for over two years. Leaving the house was a huge deal. I discussed it with friends and family. I talked it through with a mentor from the Backup Trust. I discussed it with the psychologist at the spinal unit. But basically it was a case of my taking a deep breath and just doing it. I never did. Not until I got Bingley.

Somehow with him trotting by my side as I rolled down the street, I was no longer as self-conscious as I was. I was braver, and I felt more able to deal with roads and traffic and bumpy pavements. People had an excuse to stop and talk to me and I had to stop and talk to them, but actually I really enjoyed doing it. I was no longer "the girl in the wheelchair looking a bit strange," I was now  "the woman taking her dog for a walk, who happened to be in a wheelchair." It was just in my head. This major change in my perception of myself and who I am. It gave me a huge confidence boost – I am still a woman with interests, issues, ideas, and intrigues. I'm still as much a person as I was before my accident. I simply now have an extra dimension in my life that embodies being disabled. It is amazing how much being disabled takes over everything else. It really does impact on every single area of your life, which is why I'd managed to somehow forget that I'm a person, I am not the disability.

another digging expedition!

We had many adventures, Bingley and I. There was the incident(s) where we got completely stuck in the mud… I should have known better. It had been raining for days! However off we trotted to the park and I don't know why but of all the parks available I'd chosen the one where the concrete path runs out and you have to go around the steps, up and over the green hill slope. So it's about 6:30 PM, its grey and overcast, I can feel spots of rain coming down. Bingley is running alongside me happy as Larry, until thwack!! My front castors stuck solid in mud. I nearly garrotted Bingley as he strangled himself on his collar and lead so unexpected a stop did we come to. The back wheels dug right on in and spun round and round as I tried to get us out to no avail. Bingley thought it was amazing – after a mud shower he promptly jumped up on the side of my chair, licking my hand then buried head, front paws and belly in the mud in a digging frenzy. The park was empty. I had no way of contacting my PA. She wasn't even sure of which Park I'd gone to. I looked around for help, but there was nobody there in the coming gloom. That was when the panic set in. Scream at the top of my voice was an understatement. I yelled and I hollered. I cried help, I cried hello, I cried girl in wheelchair … Thinking about it I was very lucky there was no dodgy bloke lurking about in the bushes, which frankly in Liverpool one should really expect rather than take as an exception. Anyway, a bloke did come to my rescue, but only after enough time had passed for me to picture the newspapers: Police Hours Wasted by Daft Quad Stuck in Mud. In my mind the police had out their dogs, even the helicopter with its heatseeking camera… Though it wouldn't work of course, because my body temperature would have dropped from being outside so long. As I was saying, a guy walking his own dog came along and was chivalrous enough to help me out the mud. Boy, was I relieved to see him!

My PA, however, was less happy to see me and Bingley as we were both chocca with mud and she had the pleasant task of cleaning is both up *cue evil laugh… mwah ha ha!                      

And then there's the time when Bingley stole my knickers…

He looks so sweet and innocent, doesn't he? Butter would not melt. It's all just a ruse to get away with as much trouble as possible! My PA had hung up my washing on the clothes maiden. Unfortunately, she had decided that the lower levels could be used for my delicates, and this was far too enticing a treat for Bingley. He sneaked up the corridor, gingerly took a pair of knickers when nobody was looking and then bolted hell for leather back down the corridor, through the lounge past my wheelchair and out into the garden.

It was so funny that I couldn't stop laughing. At the end of my garden was this gorgeous little creature, the naughtiest imp I had come across with a pair of my briefs between his jaws – I wouldn't have minded except they were my Supergirl pants! Naturally I had to send a PA to rescue them from him.

Underwear is frankly a whole new ballgame when you become disabled. Especially if your upper body has no muscle tone/control left. You want to buy something that fits, but you also have to take into account the fact that you cannot feel it once you're wearing it. You therefore do not know if anything is digging in where it shouldn't be, and you don't know if anything has fallen out that needs to be kept cupped. And of course there is the ongoing decision – do you buy something practical or something you don't mind being seen should you end up in hospital surrounded by male doctors… Why can't there be something both practical and attractive? Why must I always end up at M&S, instead of Agent Provocateur?

And then that begs the question why should I bother worrying what my underwear looks like? The only people who get to see it are my PAs, the occasional paramedics and those unfortunate enough to come around on wash day. I guess the reason my brain is wandering along these lines today is because frankly, just because a person is paralysed doesn't mean that they have their sensual side switched off. Dammit, I miss snogging! My close friends will probably be groaning inwardly because they've heard that sentence before many a time, even from before my accident! The point I guess I'm making here is that just because I'm paralysed, it doesn't mean that fundamental part of being human has gone from me. I think I can speak for pretty much the whole of the disabled community here in saying that just because we are disabled, it does not mean we no longer crave intimacy. If anything, we may need it more than before our injury because so many people withdraw from us. And let's face it, it's always nice when somebody fancies you!

Please follow me on Twitter: @TingleTetra

Entry 7: Eyeballs

Eyeballs – either you can touch them or you can't. For many a year I was unable to do this… I started wearing glasses when I was 10 and over the years have steadily become increasingly blind (sorry, I mean shortsighted). I literally cannot see past the end of my nose, though I hope metaphorically I can see much further than that. In my 20s I attempted several times to wear contact lenses, and failed. Overcoming that completely natural and overwhelmingly strong reaction of stopping anything not only touching my eye, but putting something in it was very difficult for me. Basically, I was one of those people who could not touch an eyeball!

My glasses became like a piece of armour. I hid behind them, knowing (or at least believing in my head) that I was less attractive because of them. If the eyes are a window into the soul then my glasses were a shield hiding my soul away. My glasses were quite a feature of mine, that even after I had stopped wearing them for a good year or so, when an acquaintance designed a graphic avatar for me, he made it with me wearing glasses. When an elderly family relative greeted me at a function after not seeing me for many years, she had no idea who I was. When I told her "I'm your grandniece – it's Helen!" Her reply was "oh, I didn't recognise you; I was looking for your glasses."

Needless to say then, finally conquering the fear of touching my eyeballs and overcoming the involuntary reaction that stopped anything going anywhere near my eyes was a big deal for me. Starting to wear contact lenses meant that I was no longer hiding. My soul was there for all to see, if you looked deep enough into my eyes.

Any person wearing contacts knows that you should never leave them in longer than 8 to 12 hours. You are told that because of germs breeding on the contact lens the risk of infection is great. You run the risk of causing Keratitis (an infection of the cornea that could end up in a cornea transplant; herpes, bacteria and fungus can all cause this (http://www.geteyesmart.org). I was therefore fastidious about washing my hands and making sure I took them out at night. When I had my accident in Chile, they got left in for four straight days. When they finally realised I had contacts in my eyes, they did take them out… And I got my glasses back. I went from being able to see everything, to only being able to see through the little window of lens provided by the frame. Once I returned to Britain I insisted I would start wearing my contacts again, much to the disapproval of my parents. Hospitals are places that germs run riot. And now I would need to have somebody else putting in the contacts and taking them out. If I think about it, this was the very first thing I insisted on doing/achieving when everyone around me was saying it was impossible. It took a while, but after several weeks in the ITU of having to constantly ask somebody to push my glasses back up my nose (at one point we Sellotaped them across the bridge of my nose It got so bad), I insisted that I wore my contact lenses again. The nurses in the unit were fantastic – and they were all for touching eyeballs!

Now I am able to train up every new PA that I have to put in contact lenses and take them out again. However, in the two years I've been out of the unit I think only one of the girls I've worked with actually knew how to use them from wearing them herself. Everybody else simply had to be willing and able to touch my eyeballs! I happen to know that of all the jobs that the PA has to do, dealing with my contact lenses is THE most hated job. As a result, I end up leaving them in. More often than not, they get left in for almost a week… Not wanting to deal with their reluctance and having to brace myself to have the trust in this person to basically put their fingers in my eye.

Yesterday I went to the opticians for a full checkup/MOT of my eyes. I've recently been having trouble seeing my laptop screen, and focusing on text at a distance and also waking up with headaches over my eyes. The optician immediately told me I had an eye infection beginning and I was not to wear my contact lenses for five days. We had fortunately caught it in time. He didn't name it, but perhaps it was Keratitis. I reckon that as this is my first ever eye infection since I started wearing contacts, and certainly the first trouble I've had since, ahem, I've been leaving them in for days at a time that I've been very lucky indeed.

Entry 6: Behaving Badly

Smoking, picking your nose, drinking too much, breaking wind from either end in public, driving over the speed limit, biting your nails, not washing your hands after the toilet (yes, you know who you are and there's more than one of you!) – We all have our own little bad habits. Things that we have either chosen to take up consciously, such as eating too much chocolate or never really noticed we were doing such as drumming fingers on any available surface.

I had many a bad habit. Over the years I've had bad habits that have come and gone (yes, I will admit that I used to smoke *Shocked face*), and I had ones that stayed with me right from childhood such as biting the skin around my nails… Not biting my nails you notice, which would of course be the normal habit to form, but the skin around them. I have wondered what a psychologist might make of that at times! There have been times when I have drunk too much. A glass of wine after work, becoming a bottle… It became a habit to a point where I thought that I could see the very faint line between habit and dependency. Ironically enough, I was saved from that bad habit by getting a job in a pub!

Quite often we don't even realise we are doing something habitually, and it is only when we are not able to satisfy our unconscious need that we suddenly realise we even have a habit. For instance, now that I have to consciously ask other people to do something for me I never realised how much I procrastinate. I mean, I knew I always had a lazy bone somewhere but I always kind of thought it might be a small one like in my hand or foot, and I always knew I dreaded having to deal with slightly scary yet important things of which I would put off till the last possible moment. I like to adopt the "mañana philosophy" of Peruvians whereby if something can be done tomorrow instead of today, then let it wait until tomorrow. Is that a bad habit? Or the adoption of a culture style from my many travellings? Okay, okay, perhaps it is not the most efficient use of time…

I know of a bloke who lives in Southport, who became a high-level tetraplegic following a virus attacking his spinal cord. He was a typical scally. For those who do not understand Scouse – a scally is a person one might observe in Shameless (that highly educational and informative TV programme that renders travelling unnecessary to observe another culture style). Don't get me wrong, I'm fairly certain he'd be proud to wear the label. :-) I mention him because he would have had pretty much all of the above bad habits that are mentioned at the opening of this blog, along with a few that my innocent mind would never be able to come up with. He smoked. He drank. He dabbled in drugs. His language was more colourful than a rainbow. However, now he can no longer hold a cigarette, let alone light one. If he wants to drink too much, he must plan ahead. First, making sure that either a) someone will be on hand to administer an intermittent catheter or b) have an indwelling catheter put in for the evening and attached to a leg bag making drinking to excess non-lifethreatening^#1 (in the short term at least). In many ways it could be observed that because of his paralysis his quality of life/health have actually improved. So, do we say hooray for the SCI?? That is out with the jury for me…

So then, how can I perform bad habits when I am most consciously aware of them, and what's worse would have to ask another human being to either do it for me or to me? I have to admit that my intake of chocolate, dark, milk and white alike has remained fairly consistent with the level consumed prior my accident. I did however experience the embarrassment of asking my PA to come back and then come back again and then I would call her yet again for more and evermore pieces of chocolate. I kind of figured that I'd been through far more embarrassing situations to really give a toss what the PA thought. She was leaving in three days anyway…

The worst is picking my nose. There's nothing more annoying in the world then a bogey you just can't reach. Or in my case,  it's a bogey that I can feel is up there and constantly making me twitch my nose. I end up going through a bit of a process – 1. Does the bogey need to be imminently removed or has it yet to make its way towards the exit doors? 2. If the bogey must be removed imminently, can it wait until I have finished what I'm doing/until bed/until I can be bothered to call the PA? 3. Does the PA have the required amount of toilet paper necessary to complete the upcoming task? Nose Analysis undertaken to determine necessary amount, then after initial blow, Reassess. 4. Is it necessary for the PA to initiate the Shadow Finger Technique, because the bogey is clinging on like artex to a ceiling? 5. Although I'm totally grossed out by the entire process, insist on looking at what said process produced… All that hard work and effort must've been damn worth it!

I challenge all the able bodied people out there reading this right now, next time you need to blow your nose get someone else to do it for you. It makes for an excellent bonding experience…

I knew I always

The reason I started to think about bad habits was because I was staring at my fingers the other day, and noticed how lovely and clean and neat they were, instead of red raw with little bits sticking out that I just wanted to nibble on. In the past I would chew on them both consciously and unconsciously, born out of the nervousness that self-doubt and low self-worth can bring. For years and years people told me to stop biting. It was not unknown for me to draw blood. The reason a habit is called a bad one is because it is an undesirable behaviour pattern. Don't get me wrong, I did not win the war on biting my fingers and manage to stop. No, this bad habit has been conquered by my SCI, by making it impossible. Whilst I'm genuinely happy that finally, after 30 years of hideous hands, I can be bold enough to say "actually I might go with the pillar-box red nail varnish," I still think the price was too high to pay. So I'm going to throw it out there and ask what bad habits do you have? What is the one thing people are forever telling you to stop doing? Is there something that you would give anything to have the willpower to be able to stop?

Well, I gave control over my body, the ability to feel warmth on my skin and I'll never be able to brush my own hair again. I gave my dignity, privacy and my independence. But I have nice fingers… So long as you don't count the claw-like shapes that they make now that my tendons are tightening up…

If you have a bad habit, and you really do want to stop – then get help and do it. But if your bad habits are fun… And that's all your bad habits are at the end of the day (yes, I have a parent who will belch at both ends in public and smile whilst doing it. It's not my mother.) Then carry on behaving badly because we all need to laugh more anyway!

#1 – and overfull bladder can lead to Autonomic Dysreflexia. This is the body's way of letting you know something is wrong, but basically your blood pressure gets higher and higher. Eventually, this can kill you if you're not careful. AD only occurs in people with high level SCI's.

Please Follow Me on Twitter: @TingleTetra 

Entry 5: May I Be of Assistance?

Attempting to describe what the relationship is like between a "PA and client" has had me stumped for a few days. Caz asked a lot of questions which led me to thinking how on earth would I describe what it is like having a carer, without needing to be looked after.

I always feel like a bit of a goon when I mentioned my PA, because in the regular world people with PAs are highflying business types and those who are in need of assistance organising their life because they just have so much to do. It is a term that is normally only ever associated with The Office Environment. So, why on earth do I have a PA instead of a carer? Well, it comes down to dignity I guess. Those who are in need of care often are people who cannot speak for themselves, who are very vulnerable and unable to physically look after themselves or ask for help. Being cared for is a lovely notion when it is a loving member of the family as an expression of love, but when it is strangers coming in to make sure that as a human being you are maintaining a certain level of hygiene, nutrition, basic standard of living etc there is something very demeaning about it. It suggests that you cannot take care of yourself, be independent, think for yourself, that you are reliant on other people; a weight on society who is draining funds and resources.

One of the very, very few things that was not a bad thing when I had my accident was that I was still myself – I still have my mind. I am still able to think for myself and make decisions, and I am lucky enough to have been injured at a point in my spine (never thought I'd say that in any context!) to be able to speak and breathe. Therefore, I can speak for myself and let my decisions and opinions be heard. I know how to take care of myself and how to direct that care. So I am assisted personally, rather than taken care of.

I have for many years been closely linked with people who have needed carers. At one point I was a carer myself going into people's homes and looking after them – helping them to dress and undress, helping them with meals, helping them with their continence… And now it is me who is being helped. I think this has been quite important in my working alongside PAs over the last two years because it helped me see things from their perspective and if not just my own.

When I was first considering leaving the spinal unit, and setting up the house and my care package, I spent many a session with the psychologist and on training days working out how to live with a PA. There is so much to consider, and it's all affected by how they are funded, and how much time you get given. It is a very unique relationship because they are not your friends, and yet they will know things about you, no one else will ever know. You do not draw close to them emotionally, but I have to trust them enough to tell them my pin number. You can give precise instructions and yet it will never be the same as doing it yourself. I may want to leave the house on my own, but I always wonder if my laptop and other valuables will still be there when I get back. In many ways it can sometimes feel like I have a servant. I was always so independent, that I did find giving instructions and asking them to do things for me very hard. In the beginning I had quite confident PAs, who practically told me what to do! As time has gone by my confidence has grown and I feel more able to command situations and direct the person with me. There was a run of months where I had a different PA every 2 to 3 weeks, and I came to dread having a new person who I would then have to quite literally train in "The Ways of Helen". In the end, a very good friend prompted me and then bugged me to produce "The Book of Helen" for every PA to read saving me from having to repeat everything all the time. The book is now available on Amazon at a retail price of £6.99… Just kidding! Seriously though, the book did help in some respects with those PAs who were conscientious enough to read it and those who had a good enough grasp of the English language to understand it.

On the whole I think I've been very, very lucky with the PAs that I have had. I had heard horror stories of what life was going to be like living with them, and having someone constantly around in my space both annoyed me and fed my fears of how vulnerable I had now become. For the last year or so I have had two steady PAs working with me, with only the odd stranger here and there. I basically got to pick them from the group that had flowed through the previous year, and they were happy to come back and work with me, which is always nice. :-) Having someone regular working with you does make all the difference, and although you know that it is essentially a business arrangement, one hopes that the PA has chosen that line of work because they have a caring nature and a good heart. 

Entry 4: Pneumoania

People with a high-level SCI have very little to no lumbar support. In layman's terms, that means my back, stomach and core muscles no longer work, and that also includes muscles around my chest that would normally be involved in breathing. If my SCI had been any higher up my neck I would be on a ventilator for the rest of my life. As it was, there was just enough nerve signals getting to my diaphragm and some chest muscles to allow autonomous breathing. It took awhile to bring me off the ventilator, a few months, and a little while longer after that for my tracheostomy to be removed.

I mention all of this as background information to paint the scene really as to why my catching any sort of chest infection could actually kill me. Maybe I'm being melodramatic here, but actually, my breathing is such that I have no cough reflex. So if you can imagine having a full chest of phlegm… You're at your sickest, as your coughing and hacking and bringing up all kinds of goo. I can't do that. I literally cannot bring up any goo whatsoever on my own. Being unable to breathe is so very scary; you can hear the rattles and bubbles and crackles inside your lungs but you simply cannot draw in any air, or let it out again. So you dial 999, and hope the paramedics will arrive quickly.

A year and a half ago I was admitted to hospital in Liverpool due to the above problem described, and whilst a friend was visiting me I grew short of breath during our conversation. The next thing I knew I was gasping for air, then I could not breathe at all, and then I passed out. I woke up in ITU - having had a respiratory arrest. My lungs simply could not work any longer with all the crap inside them. Needless to say, this caused great concern and panic for me because, well, it came out of nowhere… One minute I was chatting away and the next I had a plug of phlegm that caused me to stop breathing completely.

Just over two weeks ago I was admitted back in the hospital because I could not breathe properly. It came on within an hour… First I was feeling fine and then I started to feel funny, and I couldn't really cough but I needed to. My PA tried to assist me in coughing, but nothing was shifting. 12 hours later I still wasn't able to shift anything off my lungs and I was gasping and rattling and wheezing. My temperature was soaring, my oxygen levels were down, and the paramedics whisked me off to A&E.

1. When a girl can't breathe she's going to panic. Do not ask questions about whether or not to pack her shampoo and toothpaste!

2. Physiotherapists should be ready and waiting at the hospital, due to the paramedics radioing ahead. They should not be called in three hours later after arrival in A&E.

3. Taking four samples of blood from a panicking tetraplegic will only serve to make her panic more. One set is expected, the second is reasonable, should the first set be inconclusive. The third and fourth will only cause more panic and raise suspicion… Wanting to know what is so important about my blood that is causing concern for so many samples to be needed.

4. Recognising that the tetraplegic who cannot feed herself or use her hands is probably very reliant on her PA/carer for pretty much everything, so NHS staff should realise that the PA has quality information and superior knowledge of the patient than they do. Listen to her.

5. Primary Care Trusts should understand that hospitals CANNOT fully provide for the care needs of a tetraplegic with such limited movement, and therefore the PA/carer should not be removed at all. Continual care is necessary to provide continuity, and reduce the stress of the patient. Whilst I'm suffering with pneumonia I do not want to have to explain and repeat to every single new shift of staff how to feed me, wash me, dress me, turn me, and aid me in personal care.

6. Most importantly - I'm dealing with PNEUMONIA, I do not want to have to tell every new person who comes into contact with me how I ended up as a tetraplegic. The sickness is hard enough without having the stress of My Story having to be told a million times.

7. The most effective way to clear lungs in a person with no cough reflex is to assist them in their coughing - basically giving them a form of the Heimlich manoeuvre. A slight shove will not suffice. Especially when the phlegm is like wallpaper paste. You've really got to basically punch me in the stomach! Physiotherapists know how to do this. Teaching nurses is great but then nurses teaching nurses is not so great. Especially when it's then nurses teaching nurses (becoming third and fourth hand). It's like a form of physical Chinese whispers, and in the end, when I need my chest clearing the physio needs to be called anyway! It's really annoying that I always need them when they are not actually at work… Early in the morning, and last thing at night.

Okay then, that's enough moaning from me for now I think. Needless to say, I was very glad to get home!

Entry 3: Economic Tool

in my quest to find a decent blog spot, I have decided to experiment with tumbler and Google…I know a lot of people come on here and read all sorts of things about just about everything. I must ask everyone who is in any way interested in what ever is that I'm writing about to please be patient with me as I find the best way for me to blog!!

I'm currently sitting in my living room/bedroom having just listened to my PAs doing a "handover" for nearly an hour. It's really interesting in some ways hearing what the PA who's been with me for the last week actually has to say about my care needs and provision to the new girl just arriving. It's actually quite disturbing that it takes an hour to really go through everything, and even then it's just the basics! Who knew that there was so much to say? I'm frequently reminded at times that I am quite hard work. Another human being has to be employed and paid to ensure that my health, safety, and general life can be kept at a reasonable standard. Without another human being being paid to look after me, I would literally grind to a halt and I suppose eventually I would die. Unable to feed myself, or give myself a drink, I imagine I would die of thirst first. I would end up with pressure sores because I cannot move myself. I might develop Autonomic Dysreflexia because I cannot go to the toilet,which basically would mean my blood pressure would get so high that it would cause some form of brain aneurysm or heart attack or whatever happens when your blood pressure gets so high – it would basically kill me.

Vulnerable seems like an understatement when I think about it.

Entry 2: Hello and Welcome

My first blog entry was written some time ago, during a spell when I had particularly felt a way of describing what it is to be tetraplegic/quadriplegic that could reach others. one of the biggest issues that I personally have come across since becoming paralysed is the major, life changing differences that now exist between my world and those of the able-bodied.

I hope in this blog to be able to express some of the challenges that I have faced and overcome, and to be able to provide encouragement and support to others out there who may be in my situation or something similar. I also would like people who are not disabled to read and find out what life is really like  in a chair; although even the most empathetic person can try to understand, I know myself that there is really no way anyone who is able bodied truly can appreciate what it is like. therefore, the more information they have, the better really.

First of all I'd like to give you some background information about who I am. Born and raised in Liverpool, I moved south when I gained a post in teaching children with special needs. I was raised with a brother who has profound autism and I had over the course of my life come into contact with both children and young adults with a wide range of disabilities both mental and physical. following several years of teaching, I decided to take a year out to go travelling. I had already spent six weeks in Australia, and I was determined to return there via South America. After travelling through Peru I went south into Chile. I went up to San Pedro de Atacama, and I saw geysers spraying water and sulphur, I swam in salted lakes and watched wild flamingos fly overhead.

I was on a day trip out visiting a salt pan where flamingos gathered, and a oasis in the driest desert on earth… Such greenery in the middle of emptiness. The day before this dry desert had actually received rain for the first time in years. So as a minibus driver took us at 80 km an hour along an unsealed road, it slid out of control and flipped over. I was knocked unconscious and when I came to I had been flung from the minibus, and my neck was resting on what must have been the windowpane. I could hear people crying all around me and I tried to get up to help them, to find out what was going on. But I couldn't. I couldn't move. My body wouldn't do what I told her to do. I started to feel pins and needles all over my body, and a strange man stood over me, telling me to stay calm and not to move. He covered me up so I wouldn't burn in the sun. He kept talking to me so that I wouldn't go to sleep. All I wanted was to get up, people were  crying and I wanted to see if they were okay. Eventually an ambulance arrived, and I was taken to hospital number one.

And that was the beginning of my new life.

Entry 1: The Mission

You have arrived on another planet, one that is far, far away from planet Earth. On this planet everything you know does not apply. When you interact with the native species your perspective of them is so different – you have to crane your neck to look upwards as everybody is so much taller than you. Your neck hurts as you develop the new muscles and increase your stamina to adapt to seeing the locals in this different way. Food is very similar to that of planet Earth, except everybody eats in a different way to you and because you are unique the locals will stare at you or pretend not to, as you consume your food. You want to fit in and be the same but there is no way this can happen because you are alien on this planet, and look so different. Even your very appearance, though the natives may be humanoid, is obviously alien. You have markings on your skin, damage from the journey, that cannot be hidden.
Your movements will be limited and disjointed. The atmospheric pressure and gravity field do not allow your limbs the freedom of movement you had previously and so even the very way you hold your arms, hold your posture, and position your legs is alien to those around you. They are a constant reminder in front of you of your difference to the local populace. You may experience rapid limb movements or "spasms" as your body deals with the change. The nerves to your muscles will struggle to send the necessary messages from your brain and back. If you are lucky these spasms will be short and pain-free, though this cannot be guaranteed. For this reason you will find medication in the Medi-Doc, along with many other aids for supporting your life on this planet (though this will mainly be for pain management and waste management control). Managing your bodily functions on this planet will be difficult. For some reason these humanoids engage in removing their waste product in private and on their own. This is why it is essential you remain with the team you travel with. Do not expect the locals to understand why or how you deal with this matter. They may find it "disgusting" and is certainly a social faux pas to discuss in polite society.
Of course on this new planet you would want to be able to go and explore. Unfortunately you are not designed to be able to access their world. As they are giant humanoids able to jump great steps and squeeze through narrow doorways, able to scale any slope and breathe the air around them. To go out and visit this new place means that you have to wear a spacesuit especially designed to ensure your alien body does not get too cold or too hot. It is unable to access the planet's heat source and regulate accordingly. You will need specialist equipment to allow your body to move outside. A fully charged battery pack under a chair, fat air tyres with reinforced rubber tread, and modified steering controls to allow choice of direction. And of course, don't forget your seatbelt!
Before exiting your spaceship make sure all breathing apparatus is in place (I find inhalers work best, though occasional use of a nebuliser may be necessary). Never forget your lungs are not designed for this planet's atmosphere – you do not have the muscles necessary around your rib cage for taking in the level of oxygen you would normally acquire on planet Earth. When interacting with the planet's local populace you may find completing sentences difficult, as you take in a much smaller quantity of air. The natives may not have patience with you and become hostile. Take warning!
Lastly it is necessary to say you have my full sympathy and support for tackling this new world. It will be difficult, and dangerous at times. You will become hurt physically, emotionally, and psychologically but you will also learn a great deal about yourself, your fellow mankind and the humanoids of this new planet. Though every day will be a struggle for you, if you keep with your team and maintain as much of a positive connection with the local populace as you can, you will find each day will become just a little bit easier as you adjust to life there. I do hope for your sake that one day you may return to Earth, but for your own sanity do not dream it for yourself. The spaceship is only designed to go one way and we do not have the technology yet to enable a return flight. God be with you.