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.