Wednesday 31 July 2019

scenes from the waiting room

Or "What is up with people?"

I wrote this a while ago but I'm publishing it here because I have a couple of hospital appointments coming up over the next week. I hope posting it will mean I can avoid the sort of person I talk about below!

At the hospital for a Tysabri infusion earlier this year there was a guy sitting next to me who was having a loud phone conversation about how shit his life is. About how progressive his MS is and how few options there were for managing his condition.

But he didn't do it in a self-pityingly morose way. It was like he was bragging about how hard he had it. Like the chronic illness version of Monty Python's Four Yorkshiremen sketch.

I get that this might have been some kind of coping mechanism. But surely that kind of chat should be reserved for home. Or the pub. Not in a room full of people, presumably with the same condition, who are battling those same persistent thoughts about progression and increasing disability and decreasing life options.

Maybe it's just me.

But there were a couple of young people on the ward that day. Maybe they were recently diagnosed? And they looked shit scared.

Bet that didn't help.

Shortly afterwards I saw an older guy giving himself an ulcer by stressing about how the busy nurses were ignoring him and seeing other patients before him. Which obviously didn't make them see him any quicker.

I mentioned this kind of thing to a nurse when I was getting a blood test recently. I said that surely this kind of thing never happened to her.

She said you'd be surprised how much mouth she gets from patients - about waiting times or the environment in the clinic - immediately before she sticks a needle into their arm. You would think they would check their attitude before confronting a nurse who has the power to make them very uncomfortable indeed.

I try to be a nice patient - especially when having a blood test - so the worst I get is a nurse who jokes that it's her first day on the job. This happens pretty regularly.

I always think it's pretty obvious that those who are disrespectful towards the people who are there to help them - nurses, hospitality staff, shop workers - have never worked in the service industry.

Talking about this with some box office staff at the Arts Centre where I was based earlier this year, one of them proposed a new type of National Service. One where people have to do 6 months to a year working in the service industry. Or what is sometimes called a McJob.

I think that overall levels of empathy would only be increased if this was brought in.

seems legit

Friday 19 July 2019

meeting with my neurologist

I had my annual MS MOT earlier this week. If you're anything like me, you'll have waited all year for a precious meeting with your Neurologist so you write a list of topics and questions in advance.

And after going through them - and doing the "follow-the-tip-of-this-pen-with-your-eyes" trick - you get outside and realise that only 10-15 minutes have passed.

The good news is that the last couple of MRIs have been good - no new lesions, no sign of Progressive Multifocal Leukoencephalopathy (PML) - and he's really pleased with how things are going.

Which is great because you've spent the last few weeks in a state of insomnia-induced high-anxiety. Is this a new symptom? Is my mobility worsening? Or does MS simply continue to be a fluctuating and endlessly slippery bugger?

As I've mentioned before, by the time my infusion comes around I can really feel ready for it. And one of the things worrying me was a feeling that this pre-infusion feeling was getting longer.

When I mentioned this, my neurologist said that this was a "placebo" - I think (HOPE) this was a slip of the tongue and he meant psychosomatic. And anyway, how's YOUR Greek?

So that's cool.

Having said that, when I had my infusion a couple of days later, I felt bloody great afterwards.

This was probably helped by the fact that this infusion (my 23rd) was the quickest one yet. I was in and out in less than 90 minutes, including pre-infusion observation, magic bag o' Tysabri and post-influsion flush.

If things continue as they are (no disease activity on a disease modifying therapy I can get on with), I don't see any need for me to change my medication. Especially because the next option for me - Ocrevus - would involve me having a Lumbar Puncture, something which I've managed to avoid so far.

Even though Spinal Tap is one of my favourite films ever, I really don't fancy it.

LOLZ from the clinic
I wore my FES to my last infusion - but obviously I pulled my shorts up hastily after a trip to the bathroom.

Which resulted in me looking as though I was giving my junk an electrical charge.

extreme new treatement for MS

Tuesday 2 July 2019

wheelchair envy

To sort out my little blueberry toes, I recently had to get a blood test. I always find there's a real sense of camaraderie in waiting rooms. People just chat and pass the time waiting for their number to be called.

Any frequent reader of this blog will know that my attitude to my wheelchair can be described as ambivalent at best (if not downright hostile).

When I was getting it I learnt that if your chair can fold up and/or come apart it tends to add to the weight. So there's a payoff for the convenience.

But in the waiting room on that day I noticed that the woman sitting in front of me had a super snazzy set of wheels.

After passing the time of day, I had to say, "Excuse me for asking, but is your wheelchair as light as it looks?"

She told me it was and was made of titanium. The frame is also totally rigid, although the wheels can come off.

It's a Quickie like this one (stop sniggering at the back).

I said that my own chair was super heavy. And even though I genuinely wasn't angling for it, she asked me if I'd like to have a go.

As a glasses wearer I've always hated when people ask if they can try mine on so I said no thanks. But she insisted.

Please note that I find propelling myself in my chair totally exhausting. It's so heavy!

But this was like going from an old car to one with power steering. I only had to brush my hands past the wheels and I was off.

With her encouragement I went off for a scoot around the hospital. In a couple of minutes I covered a lot of ground, zipping down corridors. The difference between it and my own chair was astonishing.

When I reluctantly returned her chair she said that it had been custom made to her specifications. And it had cost around £4,000 to get one in the UK.


Don't be surprised if I reinvent myself as an Instagram or YouTube influencer in the forthcoming months.
yes my pretty, one day you shall be mine...