Having waited some time for my dental appointment, and asked the ever kind Cherie to lend me a hand ( well, both of them ) to push me there, I got as far as the lift in the building where I live ( 100 feet up ).

There are 2 lifts, one bigger than the other. I only fit into the larger lift…

The chap sat playing with his phone near the lifts ( doing a job for my flat, inside the building ) told me that the larger lift hadn’t been working for 6 hours, since his workmen had broken it. I tried in vain to fit my chair into the small lift, now already late for my dentist.

As I don’t really get annoyed these days, I was surprised when I found myself feeling pissed off, a feeling that I made known to Duncan ( his name ). As he could fit into the small lift, or walk down the stairs, it hadn’t occurred to him at all that someone else ( me ) was now trapped inside the building.

I had to call my dentist, before giving Duncan a fair bit of flak. He didn’t do himself any favours when he mentioned that one of his guys was parked in the disabled bay outside the building. That got me going a fair bit more – that bay is designated for my use alone, and he somehow hadn’t put 2 and 2 together and worked out that it was MY bay.. despite me being in the wheelchair,  and stuck upstairs.

Disability bay abuse is so rife, it’s extraordinary. All sorts of people think it’s perfectly fine to park in one for ‘ just 5 minutes ‘ or if they leave a note on their dashboard, or if they display a blue badge that belongs to a relative ( who isn’t in the bloody car ) . All of the above are illegal, but more to the point, a massive problem for a genuine wheelchair user, who cannot fit into a standard width space ( no room to fit the chair alongside the car door ).

The lift was fixed an hour later… and I was able to leave.

Imagine how chuffed I was at 8.30 , when I got back to discover the same workmen had broken it again, and not bothered to call the engineer, leaving me stranded 100 feet BELOW where I needed to be.

It was just as well Duncan wasn’t there this second time..

Using a ladder, a rope, a girder 10 feet up, and the help of Danielle and Kim, I managed to transfer to a smaller wheelchair, and get into the small lift.

Necessity is the mother of invention, after all.

As it was 3 hours til the lift was fixed, it was far better that we tried the rope transfer.

My technique ( learnt from an old friend, Chrissy ) of tummy massage, to ‘ encourage the throughput of digestive waste ‘ has paid dividends, my waist now once more being significantly smaller than my chest. It’s taken a bloody long time to achieve this, but now I’m not bloated anymore, which imakes me feel far more presentable, and it’s now possible to do my trousers up, as well.

I can see my hip bones again. It’s been a long time.

I’m doing a lot of exercises with rubber resistance bands to try to rebuild my body after so much abuse in surgery.

My bloody rib cage on my right side is now hurting so much! I have to remember that  at least 9 of the ribs on that side are not joined to anything – that’s 18 ends of ribs that are presumably just sticking into something or other, so maybe that’s why it hurts so much?

I’m also tired from a crazy night at the RGS…. where the drinks are extremely cheap.

I did meet another Wheelchair person there, Mark, who went over the handlebars of his motorbike 20 years ago.

What a good bloke he was too .

He won’t thank me for this, but as well as saying that he’d coped very well with paralysis, he did add that he ‘ missed walking and wanking ‘.

I don’t need to add anything to that summary..

Along with the speaker, Frank Gardner, that made 3 of us with Spinal Cord Injury. Frank can actually just about stand up, though the other speaker, out of respect, sat down for most of his (very funny) talk.

I didn’t get permission to copy these pages, but do buy this book.

”The Last Gentleman of the SAS”

Unbelievably, John Randall said that he had to ‘ tone down the true horror of what he saw, as it was just too awful for people to know ‘.

Look who met me tonight..at the RGS.

Lovely bloke, too

As usual, Mark had to get in on the act  …

In this journey, over the last 3 and a half years, I’ve had the most amazing support at different times from so many different people.

What’s been a constant is the ‘non staying  power’ of most.  I have no negative feelings towards anyone at all, and thank everyone that’s ever said anything positive to me.

There’s one person that has stood way higher than all others though, and that’s my friend Pia.

I’d like to thank her for all her support and love throughout the very bad times and the relatively few good times!

Pia, you are finally off the hook, as I’m now able to be positive, even without you, a situation that I  really never thought that I’d get to.

Pia has been my Mother Theresa figure for 3 years. She’ll soon find another person in need, I have no doubt.

❤️❤️❤️

Other than that I’ve spent the last 24 hours either actually shitting myself, or expecting to.

It would seem that the District Nurse team, for all their smiles and genuine goodwill, have little actual expertise in things bowel related, and prefer as brief an encounter as possible. As usual, I’m saying it like it is. They come and they go ( asap)  but it’s myself that ends up with mud on my face ( that’s a euphemism )

I have made my exasperation known to them.

My friend,  James Randall, died yesterday. He was found in bed, having died in his sleep, I pray peacefully.

James was a man who had endured an awful lot in his life, and remained upbeat throughout.

When I met him, about 27 years ago, he was spending 4 hours each day having dialysis, as his kidneys had failed some years earlier.

Forgive me if I’m inaccurate with details, but I believe both his father ( a Second World War decorated SAS hero – John Randall – google him and buy his biography ) and his brother both donated kidneys that ‘ failed ‘, and then ( very unusually for the NHS ) he got a third transplant which worked, and lasted until his sudden death yesterday.  I believe he survived far longer than any others in his situation had,  before him.

I’d told him recently that in my opinion, he was the bravest man I’d ever met, and to me he was a hero. He replied, looked me in the eye, and said ‘ no, since your injury, you deserve that accolade ‘

I don’t agree with his judgement, but it’s of no consequence, and typical of his modesty in adversity.

Had James not had crippling kidney disease, and lived in a World War era, I’ve no doubt he’d have matched his late father’s ( who too died this year – James was very devoted to, and proud of his Dad )  wartime bravery.

James Randall, I salute you.

Two hours of sitting in the bathroom fiddling around with a catheter  and spasming,  doesn’t compare with a fun party with a DJ and a dance floor.

As my new fixed body and chair wouldn’t allow for even wheelchair dancing, then my party options are further limited now.

Aside from regular jerking legs,  I slept quite well, and to my surprise awoke with a flat stomach? The night bag contained 3 litres of pee, that being the amount trapped inside my body at the party, wreaking havoc on my wellbeing. 7 pints is a lot of wee, let’s face it, it’s a wonder I hadn’t flooded and drowned internally.

A cup of water and some fruit for breakfast and I bloat again.. tho nowhere near as much. I don’t think that I am severely constipated,  now that I’ve had evidence of a flat stomach, albeit briefly. I know that fruit can kinda ferment, but it should get digested pretty quickly….. I surely can’t be allergic to bloody fruit!?

Anyway I’ve decided to adopt a policy of  : If I expect the worst, and get something that’s not too bad, I’ll always be happy!

As things invariably work out badly, then that’s a sensible policy to exist with.

Another blow is that my carer, Anna, is having to leave me, due to circumstances out of her control, to do with her accommodation.

If anybody has a room to spare/ rent at a reasonable price, for a seriously kind hearted and fun lady, please tell me! I don’t want her to go.

It’s an eye opener to hear about the cost of renting box rooms in crap shared houses in London. You see this stuff on the telly, but assume it’s not the norm, surely?

People rent out their bathtubs as beds, they advertise  2  halves of a double bed to 2 strangers to rent and share. Tiny rooms go for £700 per month,  with only space for a bed and a cupboard. There’s such a  shortage in central London that the unscrupulous can reap a fortune from the desperate. There has to be a line drawn between profit and decency to most people, but landlords are often not the nicest people.

I hope people reading this see that whilst there is an opportunity to make some money to help with the mortgage, there is also an opportunity to do some good.

Until my injury, I owned a flat that I let out. I’d worry if the garden needed weeding.. rather than realise that I could have tripled the rent by putting beds in the lounge and the bathroom. ( No, I could not have done that )

No spasms today. I won’t get too excited, as it’s only 1.30pm – plenty of time for calamity yet.

So Danielle wheels me down the road, to the venue of a surprise party for a lovely friend.

Caroline is duly surprised, and I get as far as the singing of Happy birthday before my spasms are so intense that I can’t concentrate on anything else.

My bloody catheter is full of blood again, and blocked, so that my bladder is full, my middle is consequently bloated, and I’m in a party that suddenly is really the last place that I want to be, again feeling like a total misfit amongst all the happy and healthy people.

Kev and Cress are very kind, and Dickon wheels me back to where I live, and the District Nurse does her thing to unblock my tube.

Unblocked, it doesn’t help, my spasms are continuous, and the urine still doesn’t want to flow out.

Sally, the DN, who I certainly have faith in, diagnoses that I’m probably massively constipated, which is the reason for my ever present bloated stomach, and wants the DN team to address that asap.

Me, I just want to be happy, and this never ending bad fortune is severely testing my new found resolve.

Ah Russ .. shite day or what !! I think you are so right to share on your blog and say how you feel.. so much better for you .. you really are to be admired . I honestly don’t know how you keep digging deep .. but then I read of all the amazing people who care about you , entertain you ..look out for you …. also the fact that the system works when you need help … keep on with your positive attitude ….and honesty …. big hugs C x

So after a day of blood and catheter blockage, calls to the District Nurse for advice etc, my catheter finally unblocked itself and all seems ok.

At that point, I promptly had another ‘ accident ‘ that leaves me smelling like a sewer.

It really isn’t fair, all this.. but I shall take the hit and carry on.

It’s just that someone else has to deal with the mess for me, as I’m totally unable to sort myself out.  It’s that part that affects me most – the effect I have on other people’s lives.