My spasms were non stop at about 5.45 this morning.
Every time I breathed in, one happened. I can just about reach the light switch, if I can reach the control panel that elevates my bed, and then sits me up.
Having turned the light on, I could see that both my legs had fallen off the bed, so my body was pretty twisted in the middle. Furthermore, my catheter had got all tangled in the bed frame, so my penis was being pulled very hard from the stopper inside my bladder .
There was absolutely nothing I could do about it myself- I tried and totally failed to reach and pull either leg back into the bed, for a while. I realised that if I kept trying, I’d end up falling out of
I gave up and guiltily called the house phone for help, which came.
i went back to sleep, after apologising and expressing my gratitude for the assistance.
This morning my catheter is full of blood, from the internal trauma… which I hope isn’t too awful. I won’t panic and just monitor the blood flow, which ought to stop?
Oh, and I’ve got toothache too.
Whilst in hospital two really large and old fillings fell out, and now I have pain in another tooth as well.
I made an appointment with a local dentist, explaining that I can’t get out of my own Chair and into hers, and she’s cool with that. Things like dental issues seem so insignificant now, relative to my day to day difficulties, that I really don’t assign any drama to them at all.
The amount of bleeding has diminished a fair bit, too.
Whenever I put my chair into the stand up position, my body goes into crazy violent spasm mode – like it did before my 4 operations. I do hope that this doesn’t mean it’s all coming apart again internally? As I can never tell why I’m spasming, I can never guess, let alone be certain, as to why it’s happening. I also seem to become quite lightheaded, when elevated.
Notwithstanding that fairly significant distraction, my days have been full of productive time, of late, doing various administrative tasks that have not been my focus for far too long.
I met up with a lovely ( crazy in a good way ) lady called Lisa, whose only connection with me is via my blog, which was a good laugh to be sure, spent time with my mother ( it’s been a while since the last time ), with my employment lawyer, Piers, with Cress and Toby ( Cress helping me in a very intimate bowel related way – truly grateful ), with the always fascinating Paul Lambert, with my sister in law, Sam, and with my carer, Marie, and even seen ( fleetingly ) my daughters, who do seem to lead far busier lives than I did at their age, though doing completely different things to those available to a Welsh boy in the 70’s.
I’m making progress with accessibility to venues, and have arranged to send back my car to Motability, on the basis that I cannot any longer get into it to drive, it therefore being a pointless day expense. In the pursuit of trying to save, I’m also very keen on trying to catch buses, rather than wheelchair accessible vehicles ( WAV’s ) as I can travel for free, tho I need someone with me to get me up and down the ramp that comes out of the side of London buses … you press the yellow button on the side of the bus, the bus suspension lowers by about 10cm, sirens go off, lights flash and a telescopic ramp slides out of the side, and onto the pavement. As it’s about a 1 in 6 upwards slope, I’ve got no chance of getting up it alone, my fixed spine allowing virtually zero pushing power now.
Once in the bus, there’s always the slightly awkward moment when a mum is legally obliged to move her buggy and baby out of the wheelchair space, it being a legal obligation for myself to travel inside that space, but I smile and apologise and the lady invariably jumps up and moves the pram for me. It’s not ideal for the pram to be in the aisle either, but there isn’t another solution.
Soon I’ll take delivery of the electric front wheel that fits onto the front of my chair ( see video – not me in the film – thanks to my stunt double (?) Phil, and his dog ( name unknown ) In fact, it might not even be his dog at all, it could be a random one chasing him, or being chased by him, depending on how you interpret it. Either way, as far as I know, no humans or dogs were harmed in the production of this video, despite there being no sign of abiding by the Highway Code by either Phil, or the dog )
It actually goes as fast as 30mph – there’s possibly the way I’ll next manage to very nearly, or definitely, kill myself. I don’t think that there is any obligation to use a helmet, or lights, but I will actually use both if I venture out at speed, or in the dark )
I’m not sure if it looks cool, or like something out of Wallace and Gromit, but I don’t really care.
Hiya!
You’ll be pleased to hear that I’m still sticking to it and I’m now down another kilo.
That makes 6 in 2 weeks. I damn well will get that first stone off before Xmas!
Love,
******
X
Interesting couple of days… having become involved in another person’s optical situation.
My extremely kind hearted and polite carer, Anna, has been on the receiving end of some extremely poor service from her opticians, who have not acted professionally, and have very much put the customer’s happiness last in the list of priorities.
Knowing a fair bit about the ‘ rules and protocols ‘ that high street optical practices are supposed to abide by, I phoned up on her behalf, and politely pointed out her rights as a customer, explaining my rank and experience within the optical profession.
The so-called manager of the practice proceeded not only to argue, but also to actually put the phone down on me TWICE?!
That was very much a new experience for me, in my 30 odd years in optics.
A call to the Head Office of the company ensued, my tale being listened to in horror by their customer service representative, who assured me that the issue would be resolved forthwith. In actual fact though, 2 days later, various phone calls and a visit to the practice by my carer, has resulted in her being completely ignored by the same ‘ manager’ and his 2 bosses .
Today, 4 days later, Anna has been told that she can get part of her money back, if she calls in to the practice next Sunday.. in 7 more days’ time…
I find this most surprising and am shocked by the way that Anna has been made to feel bullied and powerless by this practice. As I have now adopted her problem as my own, I shall resolve it and seek recompense for her time and travel and disservice.
I feel very ashamed on a personal level, on behalf of my profession.
If anyone at their Head Office is reading this diary ( unlikely ), I would urge them to give me a call ASAP so that I can write about a happy resolution to this unfortunate affair…
My stomach continues to bloat to a level that is very unsightly. Anna, who is rather an expert on quite a few holistic topics, is convinced that probiotics are the answer, and I am as quickly as possible going to start a regime of those . I do, after all, take so many nasty medications that destroy my natural gut flora, that it’s no wonder that my insides would be in a mess . I do read that your stomach and intestines do always react in some adverse way to most illnesses and conditions, so it does make sense that my own are suffering.
Having a paralysed lower two thirds and now looking 4 months pregnant too, isn’t my idea of physical happiness.
Today I had a choice of what to do ( then again, doesn’t everyone ) so I went with going to a circus kinda show called Bianco, on the South Bank of the Thames, which was pretty good, but not fantastic. I think the trouble is that it takes more and more to impress us, as we see the impossible on TV all of the time.. so someone using 5 different hula hoops at the same time – 2 wrists, 1 neck, 1 waist and 1 leg, whilst stood 20 feet up on a platform as big as a tray, just doesn’t seem anywhere near as big a deal as it should.
I never mastered just one hula hoop ( and I really did try ) so I should have been absolutely awestruck.
I might be on the radio tomorrow btw, at 11 o’clock ish, on the Adrian Chiles Show.
I thought of you today when a woman tried to assist a man in a wheelchair negotiate a small space that was crowded with Christmas item decor, he barked at her and said “just leave me alone I can manage”. LOL….
Win some, lose some….
Me:
God I’d never react like that.She didn’t lose though, he did.
He failed to appreciate an act of well intentioned humanity.
Xx
Jayne:
No you wouldn’t, but that’s the dilemma for people trying to be kind….will they get ‘you’ or will they get the dickhead? ? xx
Me:
Who knows?
But still worth taking the gamble, I’d say. X
Jayne:
???
Me:
He wasn’t angry at her, he was angry at whatever injustice left him in that wheelchair.
Just unfortunate ( for them both ) that he’s not able to make the right differentiation.
