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

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

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.

Ouch.

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...

live music and accessibility

Last weekend I had pretty much the perfect disabled-person's gig experience.

A friend spotted that the buzziest of current UK buzz-bands, Black Midi, were playing at a nearby art venue. Along with another friend, we've been listening to them for the past few months and we were lucky enough to get tickets - they don’t publicise their gigs and have a minimal online presence.

I offered to drive because I wanted to take my wheelchair - pretty handy having somewhere to sit and I wanted to make sure that I wasn't too fatigued for the drive home.

The venue's website states that they "have an accessible building with lift access on all floors". But I've been burned before so on the afternoon of the gig I called them up to make sure that it was going to be ok. (Yes, it was last minute but we only found out about the show a few days beforehand - like I said, minimal online presence).

The person I spoke to could not have been more accommodating, telling me which entrance to use and that there would be somebody waiting in the (closed) shop to take me and my friends down in the lift.

Through past experience I wasn't entirely convinced that it would all pass off so painlessly. But I'm pleased to report that everything worked beautifully. There was even another person waiting for us when we got to the bottom, and once we were down there it was all beautifully flat.

I stood for both sets - using my sticks or leaning on the back of my chair - and both bands were brilliant.

The support act were Nottingham's own Rattle and during their set Black Midi's Tour Manager came up to ask if I wanted to go to the side of the stage for the headline set. I was really pleased to be asked but I'm a bit Old Skool (as well as just generally old) and I like being in the middle a bit further back. It turned out that the position he was offering me was directly behind the drum kit and, as Morgan Simpson beats the crap out of his drums, my ears would still be ringing now, a number of days later.

I caught up with the Tour Manager at the end of the night and thanked him for his consideration and for the fact that they had come to a venue which was so insanely accessible. In recent years, I've had to miss a few of my favourite up-and-coming bands because they've played at a venue which is only accessible by stairs (with toilets only accessible by more stairs). Yes, I can get to Arena venues and bigger spaces but sometimes you want to go somewhere up bit more up-close-and-personal, don't you?

He expressed dismay that this was still going on - "Isn't that sort of thing illegal now?"

Well, yes, technically. It should be the norm that live experiences should be accessible to all shapes, sizes and capabilities. But we all know that this don't necessarily make it so.

I love going to gigs and I don't get to do it as often as I like. It's still mildly frustrating that we have to call up in advance to ask questions and lay out the details of our needs to complete strangers. But this goes to show that it can be totally worth it. And an increasing number of places accept the Access card as proof.

By the way, the gent who let us in at the start of the evening was even there to let us out at the end of the gig. Bravo, Nottingham Contemporary. And many thanks to my lovely mates who pushed my wheelchair for me when I needed it.

If you want, you can even hear a lengthy email I sent into the lovely Marc Riley on BBC 6 Music the following day - it's a long email but he read the whole damn thing (with a few interjections of his own) from 09:20 here.

i am one thousand years old

It's true!

I'm having a lot of trouble sleeping at the moment. My sleep hygiene is good. Ok I probably read a little too much but in my head it helps. Although the evidence doesn't really back it up.

CASE IN POINT: last night after a lovely day out with the family in the fresh air with lots of walking, sleep was still impossible to find. It doesn't make sense.

I've started having a milky drink an hour before I go to sleep (Q.V. one thousand years old) - but sometimes I forget (see earlier point).

I worry that I'm now beyond help!

Another thing that happened yesterday was I went to the doctor to talk to him about the fact that my circulation is terrible (did I mention that I'm at least one thousand years old?).

FULL DISCLOSURE - this has been a problem since at least my 2017 relapse when the Occupational Therapist came round to talk to us about adaptations in the house. She took one look at my toes and said, "You know they're not meant to be that colour, right?"

Yeah, I know, I know - that was almost exactly two years ago…

They can sometimes look like 10 little blueberries (no pictures because FEET ARE GROSS). And they can get so cold that they keep me awake. So I've been wearing socks in bed - and they're not even Business Socks, FoC fans.

Anyway, the doctor had a good look at my (gross) feet and told me to get some blood tests - after he gets the results he might send me for a consultation with a vascular surgeon.

I tell you, with the lack of sleep, bed socks and bad circulation, I don't mind admitting that I've felt sexier.

Obviously this track by the awesome They Might Be Giants has been in heavy rotation on my internal iPod.

positivity warning

As prompted by Mrs D, who said that, as I'd been spending a lot of time working in health-related circles, I should focus more on some of the good stuff. So for what it's worth, here is a kind-of gratitude diary.

Music

Obviously having a period of down-time coupled with working from home means that I've been listening to a lot of music, both old and new. According to my Last.FM account, these are my most played albums from the last 90 days:

• Self Esteem "Compliments Please" - gobby pop music from Rebecca Lucy Taylor (previously one half of indie-folk mopers Slow Club)
• Jeff Tweedy "Warm" - grumpy old-man music (what?) from one of my favourite grumpy old men - nowt new but still lovely
• Animal Collective "Sung Tongs" - I've been getting my freak-folk flag on a bit recently. I bought this album when it first came out and didn't really get it but it's actually great and bonkers 
• The Velvet Underground, the deluxe expanded issue of their (best) self-titled third album - just wonderful, loads of previously unreleased stuff and live tracks 
• Tiny Ruins "Olympic Girls" - kind of like a groovy female Nick Drake - I know nothing about this artist, I just heard a track by them on BBC 6 Music 

With some friends I've gotten back into making iTunes-compatible mixtapes. And just like I used to do with actual tapes in my wasted youth my mixes are interspersed with bits of random film and TV dialogue.

If you're interested in hearing them, get in touch and I'll explain why the act of sharing music for which I do not own the copyright is all kinds of illegal (hem hem).

Health

Despite my extended belly-aching on here and in real life, I'm doing ok. Working on the podcast, attending infusion clinics, spending time in hospitals, as always will remind you that there's always someone worse off.

Similarly, there are people who are a lot better off, but still. Things could be worse. 

Podcasts

My top recent picks include:

• It Makes a Sound - this is ancient but my brother recommended it recently. A deeply weird mystery about music and memories. NO SPOILERS as I haven't finished it yet! 
• The Adam Buxton Podcast - so obvious but he's just too good at what he does 
• Beyond Today from BBC Radio 4 - their slogan is they ask one big question about one big story every weekday and it's always fascinating. One of my favourite recent episodes focused on the upcoming Eurovision Song Contest finals in Israel which included respected Middle East correspondent Jeremy Bowen explaining the conflict in 90 seconds 
• Help I Sexted My Boss - not big, not clever, but charming nonetheless
• The Archers - yeah, yeah, yeah, I know. But I don't pay attention to any other soap operas and this is mine. I even created a tribute to the actor who played Joe Grundy after he died…

where does YOUR anxiety go?

Mine goes directly to my legs.

I just did a search for "anxiety legs". This is the top search result:

It is common for anxiety to cause feelings of numbness and tingling. This can occur almost anywhere on the body but is most commonly felt on the face, hands, arms, feet and legs. This is caused by the blood rushing to the most important parts of the body that can aide fight or flight.

Sounds a bit like something we all know and love, right?

And that's my anxiety obviously. But where is it coming from?

Well, I've officially finished my job for the photography festival. But the lack of work isn't even the thing that's making me anxious. As I said before, I was hoping to have a bit of a break between jobs anyway, plus I still have my FUMS podcast work.

The Fampyra tablets are having their usual plateau at present. The MS Nurses have said in the past that this is just how it goes - it works great, then it just seems to stop. So I'm currently having a fallow week (all those GCSE History lessons on crop rotation obviously went into my brain somewhere).

Plus I'm taking an extra week between Tysabri infusions this month, in order to avoid paying an extra £300 for a short summer break (school holiday price rises). So medication issues might be a thing.

More than anything else, I'm just not sleeping at the moment. I'm averaging about 4-5 hours a night, and at least once a week I'll have a night when I just don't sleep at all.

Because of all this I had to cancel my appointment at the Gait lab to check in how I'm getting on with my FES (Functional Electrical Stimulation).

Similarly, I've had to roll back a little on my plan to go swimming more regularly once I was "between jobs" again. I describe my swimming technique as being loosely-coordinated drowning-avoidance at the best of times.

Lord knows what it would be like at the moment.

Image lifted from this great old series of UK Public Information Films - stick around for the brutal ending!