loosely-coordinated drowning-avoidance... the return

Earlier this week I went swimming for the first time since February 2020. I think I bought a pass to get a discount. And then the world shut down. 

What with the end of the world as we knew it, adding to my fairly well-established suspicion of people, I wasn't exactly rushing to go there. So instead, I thought I'd wait until the week before BoJo's mass herd-immunity experiment and forthcoming reliance on "good old-fashioned British common sense" (see my earlier point about suspicion of people).

Smooth move, right?

Anyway, I got my bag organised the night before and pre-booked my slot. It was actually pretty good because by looking online I was able to work out which time was going to be the least busy.

So the next morning, I woke up, went to the bathroom FOUR TIMES and got myself down for my 8 am slot. And in a lot of ways, it was much more pleasant than before.

For a start, people are now asked to turn up with their swimwear under their clothes - you removed your outer layers by the side of the pool, so no one had to go into the changing rooms (and run the risk of coming face-to-face - or should that be face-to-arse / face-to-cock? - with some old exhibitionist's unmentionables).

The pool was also divided into three lanes, for fast, medium and slow swimmers. This meant that the lanes were a lot wider than the six I remember from the Before Time.

Some things never change, however. For a start, there was - as usual - some bloke who thought he was Michael Phelps bombing up and down the slow lane. And also, as before, I was the slowest swimmer in that lane.

But that was ok. I'm not going for speed - and I'm certainly not going for distance, particularly. A bad swim is still better than no swim, I've always been told. But one of the old guys in the slow lane asked me if I was ok after one of my first lengths, and then told me I was doing really well.

In the past that would've really wound me up. But this time? I just thought it was actually quite nice.

The day after my mother-in-law asked me if I'd enjoyed myself and did I feel better. "Well," I said, "they're two entirely separate questions."

Because I in no way enjoyed myself but I did feel better afterwards. 

I only hope I get a chance to return before everything shuts down again!

--

Yes, I know that it has been two months since I last wrote anything, and ordinarily, my first blog back would involve a lot of excuses and explanations. But that will be coming next time. Maybe.

what's in a name?

Blah blah blah, it's been a while. Super busy, yaddah yaddah. 

I've always been a little uncomfortable with calling myself an advocate. A couple of years ago I went to a seminar about independence and MS treatment. I remember that I couldn't bring myself to refer to the stuff I do as "advocacy."  Instead, I just called it "Moaning on the Internet."

But I'm uncomfortable with the A-word because I really do think I only moan about stuff online. It's what Ada Lovelace / Alan Turing / Tim Berners-Lee / Tron would want. And I do recognise that some people really are great advocates. I have nothing but respect for them.

I suppose I've always been a little uncomfortable about making my MS the centre of my life. Just after losing my job I had an interview for a job with one of the UK's major MS charities (c'mon, there're only two - three or four at a stretch). While I was disappointed to be unsuccessful at the time, I can't think of anything worse than working full time on your own health condition. 

As an aside, I was talking to a friend for the first time in ages recently. I was talking about my podcast work and he asked, "Are they all about MS?"

Anyway, I think currently that I'm basically living next door (or at the very least adjacent) to MS. 

And it's super-dull and doesn't make for exciting blog posts. Not when I'm picking up disabilities imperceptibly, like coastal erosion. It all seems normal until you eventually turn around and realise that your living room is in the fucking sea. 

Picture of the author yesterday.
"I'm sure I used to get up these stairs quicker"

Lockdown has multiplied my pre-existing antisocial nature so that hasn't helped. And neither has the fact that I haven't been swimming for over a year. I can't believe how much I miss it. 

Anyway, back to advocacy.

The other week I clocked the fact that somebody' on Instagram referred to themselves as a MS Influencer. 

I mean, if they're joking that is some next-level darkly cynical shit. 

But if they're not joking.... On what planet is that the right word?

EDIT

Almost immediately after I published this, I got a message on Twitter from the one and only Jackie Z aka The Queen of GSD:

It's definitely a real word. I have complicated feelings about it but it's usually one used when someone is actually getting paid for their info and experience. It's not the right word but capitalism doesn't know how to pay people in our space without giving them a title that they use for other people who we expect to get paid. AND if we expect to get paid for our experience there has to be value in it for the company and they've deemed "influence" to be the reason worthy of payment

 Thanks for clearing that up, Jackie!

And to be perfectly honest, I've been paid for sharing my experiences in the past - at the seminar I mentioned above, for writing articles for MultipleSclerosis.net. So I don't have a problem with that. At all.

But that word, as Jackie said, isn't quite the right one.

the thing about the heartsick shut-in

This brilliant song by They Might Be Giants was my earworm this morning. It made me laugh, the way that clever, rhythmically precise lyrics can.

And then I really started to pay attention to them.

Renew my subscription
To "Desperate Bellowing Magazine"
It sure does have a familiar ring
You might say I fit the description
Renew my subscription
To "Miserable Freak Show Quarterly"
Every back-number I saw spoke to me
Acknowledging it's my addiction

Although it would be natural to be tired of feeling like a "heartsick-shut-in", nearly five months into the UK's delayed lock-down, in all honestly it hasln't involved massive changes to my everyday life.

• Still working? Yep*
• Too much? Possibly
• Going out regularly? Well, as much as ever (i.e. not so much)

* By the way, the fact that the government has stopped shielding vulnerable people with chronic health conditions and is effectively forcing them back into work makes me sick. I’d hoped that the pandemic would make employers appreciate the value of remote working. I guess I missed a meeting. 

As I mentioned before, I've been getting more regular exercise than I have in years. In fact, I'm still displaying more commitment to the Joe Wicks exercise videos than the man himself. It became part of our home-schooling schedule so we carried on doing weekday mornings even when Joe went part-time. Plus me and Little Ms D did extra sessions on weekends, and we're still going.

Recently there has been a bit of talk about swimming pools reopening. Much as I miss swimming, I can't imagine anything less likely at the moment.

Like a kind of filthy, random stock-pot! Yikes.

On the couple of occasions I've been to the hospital for my Tysabri infusion, when asked the standard question about if I have any alergies, I have said, "Only other people." I really don't have much faith in the British public's much vaunted stock of common sense.

I mean, it's never a good sign when American friends send WhatsApp messages, mocking events such as the terrible scenes at Bournemouth last month. That's right. American people, from AMERICA, think that we're idiots.

A catchphrase of mine and the divine Mrs D's was prompted by a story on our local news programme. This was immediately after the announcement that people could book foreign holidays, a ruling that, in itself, didn't last that long.

I'm sure that, as I write, the official line is that people are being encouraged to book holidays in order to support the tourism industry. However, they should expect not to be able to travel. I'm pretty sure that, had I ever been arsed to finish reading Catch 22, this might make some kind of sense.

Anyway, in the news report that evening, they interviewed a woman who was going towards check-in with her kids. They asked her why she was travelling. She said something along the lines of, "The schools aren't in, and we'd seen that bookings were possible, so we just thought, 'Why not?'"

To which we responded, "Because there's a frigging GLOBAL PANDEMIC!"

So "we just thought, 'Why not?'" has been a recurring joke, whenever another brainfart recommendation has been mooted. Maybe we have a slightly more sensitive attitude towards risk than most people.

I wanna be a much better person
Instead I worsen with every day
But there's a drug whose name I'm not sure of
Which I need more of to feel okay

Read the full lyrics to Renew My Subscription.

old news

So. I got my PIP award. Actually, I got notification the day of my last infusion over two weeks ago. But the world has since gone to hell in a handcart and it just seemed too trite and small to bother writing about.

I got the same award as previously, but this time it's for 10 years. The guy from the Citizens Advice Bureau (who helped me to fill out my form) contacted me to see if I wanted to appeal - when we met he thought that I was entitled to the enhanced rate for both Everyday Living as well as Mobility.

I decided that I didn't want to risk losing the whole thing. Plus I knew by then that some serious shit was in the pipe as far as Coronavirus was concerned. For my own self care I figured that I'd have enough to fight without adding anything extra.

So the whole PIP thing seems like a problem from a more innocent time.

Last week was our first with Little Ms D since UK schools were closed. And although self-isolation is almost second nature to me (as it is for most people living with disabilities / chronic illnesses), it hasn't been without its difficulties.

And that's only bearing in mind logistics of child care, education and getting food (i.e. up until last Saturday, we couldn't). It's also been psychologically tricky to navigate. We're all in the same house, all of the time.

But I guess it's the same all over. And we have friends and family who're all struggling, and - strangely - this makes us all feel better.

However, this virus is bloody scary. Coupled with the fact that the government guidelines continue to change on a daily (sometimes hourly) basis. Also, nobody knows how Covid-19 interacts (or doesn't) with MS medication - things seem to point towards Tysabri being one of the least dangerous options (which is not to say that it's not without risks!) And I did get a call from the MS Nurses recently to double-check that I was coming for my next infusion. So time will tell.

But no matter. We have a new messiah.

Joe Wicks was someone that I'd only heard of in passing but now his P.E. With Joe daily workout is an essential part of our weekdays. Cometh the hour and all that.

mind games

My mental game has been taking a bit of a battering over the last week or so, not helped by the stifling heat in the UK.

As Cole Cuchna would say, let's Dissect!

sing me to sleep

Obviously the heat isn't helping any of us with getting to sleep. The weirdest thing is, I have been dreaming that my alarm is going off. Yes, my dreams are that interesting.

It always happens about 30 minutes before my alarm is due to go off. But that doesn't stop me taking an age to realise what has happened.

One night this happened three times.

the drugs don't [seem to] work 

No complaints about Tysabri. But it seems that Fampyra / Fampridine has plateaued again. It doesn't seem to be doing anything to help at the moment so I'll probably need to have a fallow month.

Just in time for the summer holidays. Score.

never gonna do it without the FES on

In other walking news, the FES (Functional Electrical Stimulation) seems to be doing its job quite nicely. But it currently takes me around half an hour to get the damn thing on, however.

After drawing the correct position for the electrodes on my leg with so-called permanent markers (which ALWAYS washed off), I've been trying to do it by sight and touch. Way more complicated than it sounds.

I've got another appointment with the Gait Lab next month. Remind me to ask them to explain why I can't have a tattoo of the correct position.

wii Can Work It Out

I'm going swimming when I can but on days when I don't I've dug out our old Wii Fit. There is a great range of things to do on there.

I aim to do a bit of Yoga, some exercises and end by doing a few balance games (NOTE: I'm still the king of the Penguin Slide game).

well DUH...

I could without the not-so-passive commentary from the instructors, though.

oh get knotted..

you can't put your arms around a memory

Ah Facebook. Such an odd place. I quite like the Memories feature. Even though it's usually a memory of me posting some asinine political meme or musical blathering.

But I'll be honest. This bit of musical blather almost broke me.

Longtime visitors might recognise Annabel as my late friend who I wrote about here. Still much missed.

in between days

Tysabri infusions need to be administered four weeks (or more) apart. I've mentioned before that in the run up to my infusions I can start to feel a little bit wobblier. And this has been backed up by conversations I've had with MS nurses and other patients (mostly online).

Earlier this year we booked a much needed summer holiday. Because I'm that sort of loser (or just one who is organised), I realised that I would be due to have an infusion the day before our flight back.

As we'd booked so far in advance (a rarity for us), I spent a sleepless night in bed working out that if I had my infusions a day earlier each month I would be able to bring my dose forward a whole week by the time our holiday came round. Obviously I did not take the following facts into account:

• The Tysabri clinics are only on Wednesday, Thursday and Friday
• You must leave at least four weeks between infusions - you can't bring them any earlier

After letting me explain my drawn-out but impossible plan, the nurse explained that my only option was to add an extra week somewhere along the line.

I've been waiting for a month which offers the least disruption possible - avoiding the birthdays of both Mrs D and Little Ms D, in particular.

So the long-awaited month is now upon us!

I should have had my infusion last week. And now I’m trying not to chew my fingers off while I wait for my slot to come up in a bizarre, drug-free limbo.

I'm well aware that this has the potential (if you're an over-thinker - hi there!) to become a self-fulfilling prophecy of bad-vibes and relapsey symptoms.

But truth be told I'm feeling ok. I'm still swimming when I can and have started to use the Wii Fit again for the first time in ages. The balance games are particularly good and because I'm that kind of competitive wanker I was really pleased to achieve a new high score.

Oh yes, I'm all about Gamification - see also my unbroken 590 day run on the Calm meditation app.

But I am trying to take things a bit easier (and pushing myself a little less) in the run up to the infusion this week.

Plug me in, please!

the author awaiting his next infusion - honestly, he feels FINE...

the locus of control

My current round of physiotherapy is (I think) my fourth stint. Each time I've been signed off previously, I've been full of good intentions. And I've always ended up back there when my walking has worsened, doing the same (or similar) exercises all over again.

So, as I went to my penultimate session at Neurology Outpatient Therapy Services last week, I was feeling all kinds of separation anxiety.

I ended up talking about this with my Physio, who, because some people aren't quite so keen on sharing every aspect of their life online (weird, I know), I'll call H.R. I'd been feeling pretty low - I'd been ill and although I'd been maintaining my exercises I felt that my walking had gone down the pan.

She listened to my bellyaching and started talking about the Locus of Control:

A person with an internal locus of control believes that he or she can influence events and their outcomes, while someone with an external locus of control blames outside forces for everything. This concept was brought to light in the 1950's by Julian Rotter.
from the Encyclopedia of Psychology

She said that her role as a physio was simply to give me the tools to keep well. It's like when you pass your driving test, you don't need a driving instructor with you all the time, you just need to keep driving. All the progress I'd made over the last months was down to me - it wasn't down to her, I had done all the heavy lifting.

And I guess it's true - although it feels like we've been in the trenches together, in actual fact I've seen her no more than 10 times (my relapse meant there was a hell of a gap in the middle).

After we had talked, I did some exercises and she watched me walking. And she said that I was moving better than I had been at any point since I'd started seeing her.

So this week I have my last session with H.R. And it feels precarious. So I need to remember that I'm the only one who has the ultimate influence on my ability to be well.

This has been the most traumatic summer of my life. And due to how amazingly supportive she has been, our physiotherapy sessions have at times been heavy on the Therapy, light on the Physio.

[interestingly my therapy session this week was more like Careers Advice, but that's another story]

So I have a job to carry on.

But I'm sorry, H.R.

Regardless of what you say, you are an absolute rock star. Thank you.

Much love,


A Grateful Patient

PS I'll always try keep your inspiring words close to my heart:

Shoulders back
Squeeze the tummy muscles
Lift your bottom

put that thing away

Over the past couple of weeks I've been swimming a couple of times - for the first time since long before my relapse started in mid-June. Although I haven't managed to do as many lengths as I had been doing previously, it has been a good start.

Because I was a wee bit nervous my Dad came along on the first occasion. We went to the pool which is just down the road from our house, not the one we go to with Little Ms D which has unisex changing rooms.

The one which is closest to me very much DOES NOT. Why does this matter? Well.

By way of illustration, when we arrived last week we were greeted with the following sight.

A fully naked old man, with his back to us, bending over to dry his lower legs, balls SWINGING LOW, his third eye practically winking at us.

The level of nudity is something I've noticed previously at this particular swimming pool and it doesn't get any less weird, no matter how often I return.

Illustration based on the author's sworn testimony by my brother

I'm no prude but I can't see that I will ever be the sort of person who is that... I dunno. Blasé? Regardless of who you are, the male form is a ridiculous thing, all swinging danglers and proud salutations.

Even after I'd warned him, my Dad was silently mouthing, "What's going on?!" And that was before we walked further into the changing room to see a (clothed) man talking to a completely stark bollock naked man.

A couple of days afterwards I mentioned the fact that I'd been swimming to my community physio. After having a laugh about the old lads and their OLD LADS, I mumbled something apologetic about the low number of lengths I managed. She pointed out that a few weeks previously I'd been pretty much immobile. So I should maybe go a little bit easier on myself.

steroids days 2 & 3: night-time stress, muted positivity and a PIP-related question

As previously stated, on Day 2 I woke up fine after a good chunk of sleep. Otherwise nothing much to report apart from I had a visit from Mrs and Little Ms D which was absolutely lovely. They were pleased with how well I was doing. Truth be told my legs didn't feel quite so switched on - nowhere near as bad as they were pre-steroids, but not quite as non-shuffling. Might just have been our perception? Or even just the flappy slippers I was wearing?

Sleep was hard to come by because STEROIDS but also because I had a few thoughts rattling my noggin (which I couldn't do a damn thing about at 4am):

• My parents had to cancel a holiday to look after me this week - they only had to pay for flights but still. They rescheduled them to this coming Monday which is the day after I finish this round of steroids. When I finished last week's heavy-duty steroids that obviously led to a rapid two-day decline and immobility. So obviously I was freaking out about that. Until I spoke to them and they said that of course they weren't going (see 4am above)
• My wife has had to take the last week off work due to stress (OBVIOUSLY) so I'm worried about her. Her mum and dad live really close (like, across the road) and I think it did her good to see me up and about yesterday. But still - I worry.
• I have a PIP assessment (at home) next week today. Yes, this could be - ironically - the perfect time to have this visit and Mrs D will be in attendance too. But just how much stress can we take? Furthermore - and here's the question for YOU - how should we prepare?

I've already done a bit of light exercise today - just a walk around the garden as it's the first day that it hasn't been raining (I always hated Thomas Hardy's use of Pathetic Fallacy, so this has been particularly annoying). I'm keeping on with regular physio exercises as I arranged yesterday to have an open appointment until we have a better idea of what things will look like next week). The wider plan is to spend a bit less time being totally static (although my dad and I have come late to the party and are binge-watching Game of Thrones).

Here's some good news:

• After nine months of applying, chasing, mis-communication and MORE chasing, earlier today Mrs D sent me pictures of markings for a disabled parking bay outside our house. The street we live on is busy (plus points: I learnt to be a Parallel Parking JEDI while I was wooing Mrs D) but is also the closest street to the City Centre which doesn't have a residents-only parking scheme. Leaving the house can be incredibly frustrating. People will do circuits in order to find a space and then park really, REALLY badly - one car (owned by someone who walks into town to work or shop) taking up a space which could easily house three is a regular thing. This is going to really help.
• I've spent a bit of time on the phone to my GP about getting the Community Occupational Therapy team out to do an emergency assessment of our house and make some recommendations about possible adaptations - something which the MS Nurse spoke to us about on Tuesday. I've just got off the phone to them, they're coming out next week, which is great. Hopefully I'll be in a position to not need them soon but at least they'll be in place for the (wearyingly inevitable) next time.
• As I mentioned in a comment to the last blog, I start therapy in a week or so which will be good for me.

As well as GOT (Grade-A NONSENSE but entertaining enough) I've been listening to the S-Town podcast - something I've had lined up for ages but still, late to the party again. It's bloody brilliant and incredibly moving - HIGHLY RECOMMENDED.

If you've read this far, don't forget to give any advice about preparing for our PIP assessment! Thanks.

one step forward, two steps back

So the Swimming Pool that I've been going to has closed down!

We'd got a plan in place and everything - I was going to drop the two female Dominoes off at Kiddy Ballet [CULTURAL ELITE], head round the block to the pool, do a few lengths, and get back to ballet in time to pick them up. But no.

This means that there is now no Swimming Pool open in Derby City Centre.

Working in the Arts [see CE], I know all too well that there's NO MONEY IN THE POT. I get that.

But be honest, is this really anyone's idea of a city?

Having said that, I do appreciate the irony of  closing down the Queen's Leisure Centre on Liz's 90th birthday.

The nearest good quality pool (the Queens was, to be honest, a sh*t hole but it was convenient) is in the town where I was born. Not a million miles away but not exactly handy.

Grump.

EDIT: oft of this parish and someone who I frequently add to a list of 'Friends who I am yet to meet', SwissLet is running the London Marathon again this weekend - as before, sling him a few quid if you are able as he's running in aid of the MS Trust.

dog paddle, belly flop

Kind-of prompted by the woe-is-me whinging of the last post, I've just been swimming for the first time in bloomin ages.

I know that 10 lengths is hardly swimming the channel, but it is a start. 

It was quite funny - I haven't done any swimming since we were in Italy last year so I decided to go in the slow lane with two other people. For some reason the slow lane was right next to the one for people who think they're David Wilkie or even a swimmer from this century - Rebecca Adlington, maybe.

I didn't let it get to me and did my lengths slowly - the plan is to try to get the same amount done more regularly.

Looking for something to illustrate this post I found this, being very careful to make sure that it didn't feature any disgraced former TV stars of my youth - although I'm not too sure about the old fella at 0:34.