As the cause of my spasming is almost definitely in part yet another UTI, at least I know what’s bloody happening to me. The not knowing is mentally very frustrating ( to put it mildly ).

I do what I can at work despite my distractions and hope that I am contributing. Tonight I gave a talk on the slightly forgotten art of fitting and aftercare of RGP’s ( Rigid Gas Permeable contact lenses ) … Ah the racy, secret world of optometrists  revealed….As I’m quite old I remember when a lot of people wore ‘ hard lenses’ and as a consequence I know what to do.. which is FAR more complicated than modern disposable soft lenses.

I had no spasms today til about 4 o’clock. The optimistic ( still alive ) side of me was so relieved. Obviously it couldn’t last, and they continued into the evening.

Again alcohol seems to have helped. I don’t drink that often as I know it’s not  best practice for anyone, but it does  seem to work.

Maybe once I live alone I’ll take solace in the bottle ( but I doubt it ).  I think alcoholism is at least mostly genetic and there isn’t any history in my family background.

Alone in a bar again I’m ok ( a worrying sign perhaps ). I can’t imagine a future long term alone though – I don’t think I can survive the solitude.

They just called to say that they tested the urine I sent in a few days ago and that I have another UTI so they can’t do the procedure today.

Cursed, you see.

My spasms have been almost omnipresent for a while now. They do suffenly stop sometimes, but despite keeping a detailed food, drink and medication diary, I’m none the wiser than I was.

Having said that, as inserting catheters now leads to violent leg jerks I think that I have an internal condition or injury. Tomorrow I go for an endoscopy ( so called because they stick a scope in your end…) which may reveal the source of my frustration. Christ, I hope so. as for many reasons I could just do with a break.

Despite recent developments we actually still intend driving to France on the weekend for what I imagine will be our last ski trip as a family, and our first one proper one post accident  I do really want to be able to see and hear my girls on the snow, as I thought I never would again.

My leg jerking  continues to make driving dangerous as I need one hand on my crazy leg(s) and the other steering/accelerating/ braking and indicating.  Dani may therefore do ( and wants to do, perhaps understandably ) most of the driving

I’ve kidded Amber into thinking the Channel Tunnel train is like Disneyland on rails/ underground this week, which is a bit mean. As she is in yet more trouble at school ( for ordering a take away pizza to be delivered in lesson times ?! ) perhaps she deserves it..

I am now actually looking forward to trying sitski’ing again as I did receive my new poles/hand skis which do seem far better made than those that I have used up to now. Perhaps I’ll get the control I need..

Thank you to quite a few concerned people that have been in touch these last few days. There is unlikely to be any change in the ‘decision’ but it’s good to hear from you anyway.

Sleeping tablets ( I know , not good ) have helped.

Great to see Mike Smith  tonight.  Top boy.

I remember when I went away to compete in the Yukon 1000 canoe race, in 2009, that I had 3 pictures laminated and stuck to the deck in front of me. It was possible that anything might happen in that wilderness race, from simply drowning to being eaten alive by a bear.

The 3 pictures were of Dani, Lily and Amber. They smiled at me the whole way, a total of 115 hours of time spent in the boat.

I always had a tactic in other races – that if I felt low I would think of my girls, and it would rescue me.

Whilst driving I used to be prone to being a bit hot headed, so I stuck a picture of Lily on my dashboard, and I’d look at that if ever I felt annoyed with some other motorist’s attitude.

More recently, post injury, up until probably a year ago,  when I felt the darkness all around me and wanted out, I’d think of my wife and children crying at my funeral and it would stop me in my tracks and make things more tolerable.

Now, I have no tactic.

In the spirit of having an eventful Easter, this one is no different.

Breaking news is that I find myself single. Dani has quite justifiably had enough of me ( not particularly for the post injury me – tho that version isn’t exactly always full of beans ) but for my actions pre injury which can’t be forgiven, and rightly so.

I kinda tip between despair/ suicide and fleeting moments of curiosity as to how and if I would manage by myself. The adapted home that we share at the moment will cease to be the one that I live in. Rightly, my daughters aren’t keen to leave that place, Dani wants what’s best for them ( of course ) so the casualty is yours truly.

I don’t know what this’ll do to my relationships with ‘our’ friends, as people have a habit of taking sides, and  I’m a whole lot more obvious as the one to drop from a morals perspective.

I expect life to continue to be extremely challenging  obviously, and from now on more lonely too. The nature of break up’s is that they start, build up steam and then go off properly. The atmosphere of late at ‘home’ would kill most Earth dwelling organisms dead with its toxicity, and it can’t continue.  As Dani generally ‘ does the  right thing’ she won’t force me out until I’ve found somewhere. Going forward I expect to see less and less of my children as they already are ‘ very busy ‘ all of the time, like teenagers tend to be. I suppose that will depend on their character and I think that Dani will encourage them to meet me.

I will try to work more ( Helen, you’re in luck ! ) try to resolve my continuous spasm issues ( as I type from a service  station car park where I’ve spent most of Easter Sunday, my legs have gone into a jerk frenzy ) and maybe I’ll write that book that people keep telling me to..

I spent last night alone in a bar ( my choice ) just to avoid conflict and ‘ Good ‘ Friday also largely alone by the same rationale.

I will continue to write this diary as I start the new  chapter. Dani tells me that none of my friends actually read it any more and as I can’t ‘see’ who does, I really don’t know the score there.

For the record, Dani is 100% blameless and I accept all responsibility for my fate. And I’m sorry sincerely for all the pain I’ve caused you and the kids

I can swim now ( actually I can’t )  or I can sink out of sight. Either is  possible, though one is more likely.

Post Spinal Cord Injury the divorce rate is way higher than in the  normal population as the injured go through a long period of mental torment. I’m still very much in that dark tunnel now after 2 years and 9 months. It’s fair to say that it’s gotten harder, not easier, mentally. As a consequence it takes a extremely tolerant family to cope. There are things that could have made it far better.

If you are reading this because you have a relative  that is SC injured then please contact me, as I can absolutely tell you what might have saved me.

Happy Easter

A year ago tomorrow I teetered on the edge of a deep and dirty and dark river many thousands of miles from ‘ home’ and was moments away from a closure.

The proximity of children prevented my certain death that day, my feeling that it wasn’t fair on them.

A year later and my ‘canoe race obsession’ is in full flow. The ‘DW’ is many hours in, the hardcore paddlers this year really up against it in the awful weather.  I was in this race 11 times, but only had really bad weather the once. It was my third time and my partner and I had trained very hard. I was probably 34  ( and really relatively new to canoeing ) and he was a fresh faced 22 year old, but with far more paddling behind him. I suppose we made an odd Combi really, me very physically strong and all muscle, him slight and all technique ( the mix of the 2 would’ve been world beating ).

In those days they had different rules from now. Teams could choose to start 12 hrs later and ‘catch the 2nd tide ‘. We started ‘ normally’ on the Saturday and the wind blew at gale force against us for 125 miles ( 20 hours dead to the finish line in London ). We were the fastest crew to finish, so in a sense had ‘ won ‘.

12 hours later 3 tactically thinking crews started their attempt. The sun had come out and the wind had blown out completely. All 3 of these smart crews beat our time ( not by that much, but the clock doesn’t care ) We therefore ‘finished’ 4th.  This lad did it, like me, many times after, even winning it once with his awesome twin brother (5 times winner ).

Some years on and both our lives have gone a little bit awry.  I am a paraplegic ( and not liking it at all ) he, having forged a highly successful law career… kinda out of nowhere other than his personality  ( and he is great company ) finds himself in court facing a long jail sentence. He may well be guilty as charged, yet did not intend the outcome that his ‘alleged actions ‘ led to.

I look back to the times we had, when life was simple. We’d train at 5.30 am most days from January to mid March. We rarely paddled in the daylight. Neither of us ever wore anything other than shorts and we had an unspoken rule about never complaining. We were completely in competition with eachother over who was toughest, but never spoke about it. That winter was cold and the ice would form around our bare feet in the boat and over our hands so that we had to prise them off the paddles. Neither of us ever wore gloves.

Come the end of the 125 mile race, there are steps that most crews have to be carried up. I recall running up those steps, opposite Big Ben, that year, feeling as fresh as when I’d started 20 hours earlier. That was, of course, mind over matter, my body shutting down through exhaustion shortly after.

I wish that I could regain that mindset now. The difference is that then I felt like Superman. Now I feel the opposite.

A year after I almost ended it ( for the first time ) I think about it far, far more regularly. Whilst in America I had a purpose and something to finish that i’d committed to – like the DW race.

Now my ‘purpose’ is far less obvious to me, the challenge way more difficult than an extreme sports race. In that race you had to have a support crew – your ‘ family’ for the duration . No matter how tired, how irritable, how abusive you were to them through the race, through the mistakes , through the pain,  through the fatigue, through the blisters, they stuck with you, not reacting to your race induced mood swings and irrational behaviour.   They knew that without them the paddlers would not succeed, not beat the wind, the pain, the fatigue and the mental suffering, the voices  telling you that stopping and giving up was far, far easier.  They didn’t react to the shit that we gave them for making mistakes that slowed us down, by seconds not minutes… they sucked it up without showing emotion

The support crew arguably win the race for the racers… and they do get medals too ( if you win )  In my case as a rule it was just beer and flowers ( gender dependent ) and lifelong friendship.

I wish my former partner luck ( deserved or not )  I have of course messaged him, pretty much the only contact we now irregularly have.

And I do wish ( for us both ) that we could turn back the clock and do things diffently.

I tried the Segfree today, where I live in London, in a lift, down a corridor, up and down a ramp, over sleeping policeman and through doors.

In the world that I now begrudgingly inhabit, that of the wheelchair, this machine is quite incredible in the freedom that it opens up, the speed I could go at and distance that I could travel to…meaning a whole new world of possibilities.

I’ve been shocked and saddened by the blatant profiteering of companies that know they can get away with charging preposterous amounts for quite basic things that only disabled people need, such things as wheelchairs. I was recently quoted £2,200 for 3 cushions ( the padded bit that I sit on without even being able to feel the ‘benefit’ ).
The chairs for which these were for were 25 year old design chairs that had a piston underneath that changes the chair from sitting to standing. Just one of these crap old heavyweight units costs NINE THOUSAND POUNDS.

The Segfree costs less than this yet is a relative miracle of modern engineering. It’s smaller than my wheelchair, goes along at up to 13.5 mph, turns on a sixpence, self balances on 2 wheels, doesn’t tip over and has a range of 26 miles on one battery charge.
The people that make it make a relatively small margin ( I know what that’s like – I work for Specsavers, that make tiny amounts ‘ per unit’ so rely on volume ) I do hope that Segfree get the volume they deserve and the owners do well ultimately ( they’ll probably drop the price tho )

I was quoted £4,600 for a battery operated little electric wheel ( no bigger than a frisbee ) a few weeks ago.. that fixes underneath my wheelchair.. What an absolute scandal.
What’s even more sad is that all too often the owners of these companies are disabled themselves … Shame on them.

Segfree is a breath of fresh air.

Google them

http://www.kevsendeavours.com/?p=351

I woke at 7 perhaps. The spasms had been intermittent all night, but not enough to keep me awake ( for once ).
Amber woke and came in at maybe 10. I asked her to pass me some clothes and I took about ten minutes to pull my legs around enough to get them on. The spasms make my lifeless legs seem anything but, as they are semi rigid half the time.
Dani came back from her gym exercise and helped me to get into the standing frame – I look like I’m standing up by myself but I’m just strapped in with 3 belts. I put up with the violent bodily jerking as long as I can, having to hold onto the sides of the frame with my hands as my top half shoots forward every 20 seconds or so. 25 minutes is really all I can tolerate and then I’m able to release myself from it and semi fall back into my wheelchair. The standing frame is supposed to reduce the frequency of spasms that I get. It doesn’t though – it seems to instigate more of them.
I go to the living room where I have some straps rigged up so that I can do pull ups. I do sets of them, my feet strapped to the footrest of my chair so that when I descend I don’t end up on the floor.
Between sets I go out into the terrace where all the plants seem to be dying. The battery powered irrigation hose has stopped working so all the plants have been deprived of what they need so are shrivelled. They may well a full recovery with a bit of care, but I’m no expert.
I track down the proper hose so that I can douse the plants fully. It’s way at the back of the 10 foot storage space cupboard on the terrace. Between it and me are all sorts of things, including 2 bikes. One of them is the bike I was riding when I snapped my spine.
I pull as many things out of the way as I’m able. Having no abdominal muscles means that as I pull I just fall forward, so I hold onto the side of the door frame as an anchor. Things that weigh just a few pounds present a significant challenge to me.
Having half cleared the way to the hose, I ask Lily to climb into the cupboard to pull it out. She does, and once it’s out I set about getting the things back in that I’d pulled out and are spread around me.
I disconnect the irrigation hose – my usual position of chest onto knees being the most stable – I can’t topple from there.. Well I could fall out of the chair altogether, or the chair could tip over forwards, but it doesn’t.
Hose attachments are fiddly and tend to seize up too. I’m faced with both these problems today, but I am able to switch the hoses over and spray all the plants repeatedly. Time is something that I do have so I think I do it properly. Then I disconnect the standard hose and reconnect the other, having changed the battery and figured out the bizarrely complex digital settings so that it’ll water the plants twice, every day.
Jerk, jerk, jerk go my legs and torso, every ten seconds or so.
The last day of the Six Nations and Wales play Italy first. I transfer myself onto the sofa that I can’t feel at all and Dani lifts my rigid legs onto my chair in front of me so that they are elevated, the idea being that water doesn’t accumulate in my lower half.  Jerk, jolt, jerk.. If I press on my tummy my legs go into even more crazy frenzied jerking. I think that I can tolerate it for long enough to watch the match but after 20 minutes or so I just can’t.  I reason that it could be that I need a crap and that my  lower midriff area is full and under internal pressure.
I get myself into my wheelchair and go to the bathroom. Dani gives me a hand by pulling off my  trousers and pants. I lift myself up, my hands on my wheels and she pulls. The trousers obviously get stuck at the knees as my legs are hanging down so it’s a bit of an effort for her.
In the bathroom I put a towel over the left tyre to prevent skin damage as I transfer sideways onto the loo, having already put copious amounts of Vaseline on the back of the hard plastic seat that repeatedly damages the skin on my ass. I needn’t detail the next part other than saying it’s horrible and lengthy, and very messy. No human should have to do this – not even once , let alone daily.
Twenty minutes was pretty fast for me, thanks to my body ( aided by various drugs )  wanting to eject waste products, though I have no conscious control over any part of the process, other than manually.
Waste out, I optimistically expected my spasms to reduce or even stop. On the contrary, they got worse, coming every few seconds. I resumed watching the match, but could not concentrate at all. I massaged by legs as far as I could and manipulated my ankles with my hands. Whilst I’m doing this my spasms diminish but resume with a vengeance the second I stop.
I have some food and drink 4 pints of water, thinking that perhaps, like the plants, rehydration might do some good. By 6.30 there is no change, and we have to go out to the Park Club charity boxing, Dani helping me to pull on some clothes again. To me it doesn’t matter what I wear, I get no pleasure from ‘style’ at all now, in any way. It’s very different when you can feel the clothes that you are dressing in, compared to when you can’t.
We get a taxi to the Park Club, getting into the front seat with the help of Dani pushing me. I can’t feel her hands, I’m just aware that I move in the right direction all of a sudden.
Having tried  to stop my 8 hours of relentless spasms by :
Using a standing frame, leg massage, leg stretch, ‘ relaxing ‘ , having a crap, eating a lot, hydrating fully and punching my legs in sheer and absolute frustration, I opt to try drinking an awful lot of alcohol.
Two hours into my drink binge, the spasms seem to stop. It’s noisy in the event, and my voice lets me down. I struggle to be heard, people ask if I have a cold. I’m talking as loud as I’m able, at my maximum volume, but it’s not enough, and not helped by the slur I am aware of.
The event is a success, another triumph for Dan and his team. No one gets hurt other than in the pride department. I watched all the fighters moving and dancing around the ring, cursing my injury and my contrasting lack of ability to move in so many ways.
My voice was not up to attending the ‘ after party’, nor my height down here at waist level. I’m too mixed up to want to go.

Today Dani and Amber and her friends have gone to an amusement park for her forthcoming birthday . The rides ‘are all wheelchair friendly/ accessible ‘   The small print says that people in chairs are no problem, provided that in an emergency they can walk down the steep metal fire escapes by themselves .. As I want them all not to miss any rides by having to keep me company, I opt not to go.
Lily is playing hockey and I’m alone here and have been all day. The lull in my spasms has finished – they’re back again.
Again I’ve done my pull up’s and I wheeled down the road and had a coffee, after having a shower. As getting on trousers is so blimmin hard I wear shorts. I used to live in shorts once upon a time, so will go back to them. The trouble is that I am more liable to injure my legs… Decisions.

There are times when I just feel disabled and there are times when I feel extra disabled. Into the latter category goes such things as toppling over on my Sitski and being 100% unable to move, but also such experiences as this evening when I went to my daughter’s parents evening. As all the able bodied parents rush about and through the crowds, I am unable to. I can’t get through doors, up ramps, go in a straight line along carpets ( they always have a ‘grain’ that pulls me one way  ) or go through crowded rooms  ( no one seems to notice the guy in the chair, only  3 feet tall, until they’ve practically walked into him or fallen over him ) and there is the ever present awareness of the large number of people who don’t want to stare,  so look the other way instead.

My body spasmed through the 2 hour experience, probably not apparant to anyone else but totally distracting to me, to the extent that I fail to hear half of what the various teachers say about my daughter.

I’m now back in our flat and my legs move uncontrollably continually. I punch them in frustration and envy the normality that goes on around me.

I’d spent the day in my workplace,  not had many  spasms and got a few things done. When I look back at my day, the non spasming work part was the best period. As my legs jerked all the night through last night, it’s not been a good 24 hours for my mental state, and I can’t see that going to bed will make anything any better – as it usually doesn’t..

Long gone are the days of just crashing out and waking up rejuvenated.

I’d had a very bad weekend of depression that seems just below  my skin sometimes, just dying to burst out.

I miss the simplicity of life.  The friend whose new glasses have really thrilled her, the person whose sore neck ( that’ll be gone by morning ) is getting them down.  What they’d be thinking  if facing ‘ my challenges ‘ I couldn’t say of course. Perhaps they’d be better than I am at it, I don’t know.

Good to see Tanju, the late Selcuk’s brother, today ( I intend to get to know him a lot better – what a lovely bloke he is ) and also D- Man and Roy this morning.