24 September 2016

Today has been surreal. I was accused of lying on my profile on a dating site.  In my defence, I had a link to this blog on my profile, it explained that I have MS and included a photo of 'old smokey'. Granted, it wasn't a recent pic of 'old smokey', but I didn't feel the old girl had weathered too badly,and certainly didn't deserve the hysterical "lies lies lies". 

I must try to avoid psychotic illiterates in future. 

17 September 2016

I'm unsure if it's the beginning of the end, the end of the beginning, or something else. What I do know is that I feel totally humiliated. That's nobody else's doing. It's all my own work.

The past week I've had problems with the toilet. I can go perfectly well (thanks for asking) I just have struggled to get onto the toilet and to get off it. Such a simple task. I've been doing it for decades. Quite successfully too. But no longer.

It has reached the point where I have become terrified of sitting on it. It is so simple to have a pee; I just slide a catheter into my utethra and point it as the porcelain. So simple I can almost do it with my eyes shut (although thinking about the importance of aiming makes keeping my eyes open preferable).

The trouble is when I need to (as Jimmy Carr put it) "grow a tail". Moving onto the seat it a challenge (day before yesterday I ended up laying by the side of the Armitage Shanks, unable to move. And after laying the cable, I was unable to dismount.

Some would say that I shouldn't worry. Others will rescue me.  It's true. They did. And again today. They do it without a murmur. It was as it is the most natural thing in the world.

But I felt humiliated. I want to do that all on my own, and I can't.

29 February 2016

Today started ok, until I had my shower. After, as I was drying myself, I farted. Not loud but still. Only when I got back to my electric chair did I see, to my horror, the turd that had escaped with the fart. It sat on the floor of the wet room, looking a bit like a cartoon turd. It took a few moments to process. It hasn't happened before. 

My PA was really kind about it.  He grabbed some toilet paper, picked it up and flushed it away. No drama, as if it were the most natural thing in the world. But it isn't. Sure I shit myself when I was in hospital on IV antibiotics, when the infection made me weak as a lamb and (I think) hallucinating. 

But this feels different. Having been used to my MS nurse asking "how's your bladder, how's your bowels?" whenever I see her I've been waiting for it. My bladder stopped working, so I self-catheterise, but so far my bowels have been fine. I guess time will tell. 

21 January 2016

So, the last drugs trial has finished. I don't think it worked for me anyway. My MS seems to be toddling along in its own sweet way. I said (more in hope than expectation) that I'd be happy to take part in anything else that came along. His reply did kind of take the wind out of my sails - I am probably too disabled now to be eligible. Bugger. 

So then I see the Panorama programme #MSpanorama. It was what I felt would be the most promising path - stem cell treatment; they harvest the patient's own stem cells, use cancer drugs to wipe out the faulty immune system then reinfect the stem cells to allow the immune system to rebuild itself, without the screwy MS bit. 

The results were amazing. The MS lesions were eliminated so that people were able to start life again.  It didn't seem that any disability was reversed but having the ability to try rehabilitation, in the hope that the body finds new ways to route messages around the damaged nerves. 

Rarely have I seen such a promising result. The cost of the treatment was about £30k - which is small when compared to the cost of existing drugs, plus the social care etc. My elder son wanted to set about finding the cash straight away!  I am truly blessed, having a close family. 

I know that the treatment has only been tried on RRMS so far, and realistically it's likely to be at least 5 years before it's tried on SPMS, so I'll need to be patient. There is a faint light at the end of the tunnel. I have to be patient to see if it is a realistic hope or an express train hurtling towards me. 

18 July 2015

Today felt like the beginning of the end. I've been in hospital for three days. It's only tangentially related to MS in that I was going along on Old Smokey, foot slips of the footrest and jams under the chair. It hurt a bit but no biggie, I thought. Long story short, spent eight hours in A&E which resulted in my admission for IV antibiotics. 

So far so ordinary. It's a little awkward in that the toilets aren't designed for someone with an electric wheelchair. Yes, that's what I said. No, it's not an old hospital, but one of the newest in the country. I'd figured out how to have a wee in there. It's a bit of a faff but it's doable. Having a shit is a different matter. 

I delayed too long; not the end of the world.  I emptied my bowels. Then I discovered that try as I might, I couldn't work out a way of wiping my arse. Yes, I've been doing it since I was a kid, but I couldn't lean over to lift my butt. I tried and tried. In the end I burst into tears. I kept trying and kept weeping. 

It was at this point that I felt it was the beginning of the end. What living being can't wipe his own arse for pity's sake. I pulled the red cord. As I waited for the final part of my dignity to be torn away, I wept. 

One nurse came who summoned another and then a third. I think they were all filipinas. As they tried to reconcile the issue of extricating a 6'3" man with limited mobility from what is essentially a cupboard, they slipped into speaking foreignese. "I'm glad I don't speak Tagalog" I said. 

They were fabulous. They made me feel as ok as I could. I no longer felt like imminently checking out. But it was close. 

26 February 2015

So, the day arrived. At last.  Today I moved onto phase two of the clinical trial. I had the infusion of tysabri, for sure. No more 50% chance of it maybe being placebo. How excited am I?  Not very, to be honest. Well, not skipping down the road excited (not that I can skip anymore). But it's a milestone. 

How do I feel?  Mildly nauseous. It could be that I was on placebo and now I'm getting tysabri I also have the gift of nausea.  Who knows?

One excellent thing was I had another MRI scan. I quite enjoy those - laying down in a tube. The biggest problem is staying awake. Last time I fell asleep and they had to redo a part cos I moved. I've a feeling I might have done the same this time. Well honestly, they put me on this comfy bed, cushion under my knees, offer me a blanket to keep me warm. The only extra I'd need to guarantee falling asleep would be if they read me a bedtime story.  But not on the NHS!

9 February 2015

Today I am going to try to be more focused.  I stopped writing because I didn't think there was any point, but there is!  This is more than my catharsis, it's a record of the crap that I face each day, some more crappy than others but still ....

I just watched 'Catfish: The TV Show' and realised how much of it is like my life. I've always been honest online, but phlegmatic about the likelihood of others being the same. Mostly it hasn't mattered because I've not invested that much of myself in online relationships. 

The one time I did was maybe the most dumbass I've been - and I still have powerful memories of sitting on a plane, on my way to the other side of the world, thinking "what on earth are you doing?"  In the event no harm was done.  I met the woman who became my best friend.  I met the most extraordinary girl (her daughter) who has become the daughter i never had. 

We both thought it might be something, both knowing that wasn't very likely and yet we are still in touch. We might not hear from one another for a few months but when we do it's like the conversation just paused. 

She knew me before my diagnosis and, like my family, doesn't give a toss. She paid for me to go out there for my 'nearly-daughter's' 18th. She hired a wheelchair to make sure we could get around as we had always done. 

I guess that's what makes her so special to me; like all the close people in my life, she knows how I have changed and doesn't give a toss. To her, I am just me. And that is very special.