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.

that’s not MY MS...

Parents everywhere will know the "That's Not My..." series of books. If you don't have kids, the pages have different textures and readers go through a process  of elimination - that one's too bumpy, shiny or furry, etc. - until you discover the correct monkey, dinosaur or robot (for example). 

Wow, I sucked the joy out of those sweet little books, right?!

However I've been reminded of them recently.

A couple of years ago I read Jon Ronson's brilliant So You've Been Publicly Shamed. It's all about internet shamings, predominantly on Twitter, where someone speaks out of turn or makes a poorly thought-out joke and, because it doesn't fit in with the accepted view of a particular echo chamber, the other members pile on top of them.

Listen to an abridged version of the book read by Jon Ronson on the BBC.

I picked up on a tweet recently, by someone that I follow.

It seemed pretty innocuous and chimed with my own thinking, so much so that I shared it myself.

However, the original tweet didn't fit so easily with the accepted narrative of a small corner of the Twitter-sphere. Some users picked it apart and got pretty angry. I won't share grabs of their messages, for reasons that will become apparent (and I got permission from Mr S before I started writing this).

Some felt that he was being ableist and didn't understand MS (they could've found out that he has the condition himself). Some reacted as if he was saying that the way they were living with MS was somehow incorrect. Some felt he was basically saying that all the things they were living with weren't that big a deal.


One of the things people are told when they receive an MS diagnosis is that everyone's MS is different. Which is why some people call it a "snowflake" disease - not in the current Trump-presidency alt-right Brexit-era sense of the word.

My initial thinking was that the people responding to the original tweet were denying Mr S' own experiences of living with MS. Plus I've traditionally had a bit of an issue with people who seem to live entirely through the filter of their illness. Perpetually blogging and tweeting about it. Everything was fine before I was diagnosed, everything has been shit ever since, no one understands, no one cares.

My original plan with this blog was to write about how those people had forgotten about the unique nature of MS. About how everyone's "journey" (that bloody word again) was their own. And what did they think the newly-diagnosed would make of these perpetual micro misery-memoirs?

However, I now see that by writing that blog I would be denying them their own experience of living with MS.

Who am I to judge them?

Truth-be-told, my gut instinct is that I agree with Mr S' view. I still don't think it's particularly healthy for people to endlessly repeat the same narrative and have MS as the centre of their being.

But then, I don't think it's massively empowering to (by way of a not-at-all random example) ignore the reality of your increasing mobility issues. Which is exactly what I'm doing currently.

If all the tools of social media had been in existence and so ubiquitous when I was first diagnosed, I can guarantee I would've been using them in exactly the same way that some people do. For God's sake, even an old fart like me has been keeping this very blog going for over 10 years now!

There is a kind of reflexive-perma-moaning which (no matter how understandable) will likely continue to stick in my craw. But I don't have to read it. And if it works for you, more power to you.

It might just be that YOUR MS isn't MY MS.

no more drama

Last week was pretty trying.

To start, an appointment with my Neurologist, my first since my relapses last year.

I like him but I can’t help thinking he seems quite keen to rediagnose me as Secondary Progressive Multiple Sclerosis. Yes, I know this is how it goes for the vast majority of cases - is it still 80%? But this figure always makes me think of the following panel from Daniel Clowes' Art School Confidential story:

Clowes D, p.19 Eightball #7, Fantagraphic Books Inc, November 1991

We all think that we're in the 20% because anything else is too scary.

And I don't mean to offend anyone reading this who is already SPMS (or even PPMS). Neither am I so dim to not be aware that MS is progressive in nature in all of its flavours.

But having it in the name of your condition for the first time is going to be hard to take. So forgive me if I want to stall it for as long as possible.

Anyway, the stress of this appointment meant that neither myself or Mrs D slept at all well the night before.

To cut a long story short he was actually really pleased with how I'm getting on. As I think I mentioned before my first test for the JC virus was negative but I am now slightly positive.

Interestingly, although the JC titre [a new word for me too!] can go up and down, because I've gone from negative to positive I will always be counted as positive from now on.

But on the whole it was all good.

After that I had my birthday and a fairly dramatic infusion.

One other person on the ward had to be revived - I've not seen so many panicky medical professionals go behind the curtain around a hospital bed since Little Ms D’s birth.

A nurse - who looked really shaken up - asked if we wanted to be moved to another ward. But as I was nearly finished we decided not to bother.

The person eventually came round and was ok, by the way. At least that's what the nurses said anyway.

However it was still pretty unnerving to see her named on the ward list as a fellow Tysabri patient.

What is this crap I’m having pumped into my veins every four weeks?

Ne’ermind. See you next month!

the die is set

World's oldest Multiple Sclerosis diarist / proto-blogger discovered.

Is a bit maudlin. And darkly funny.

Who knew?

https://www.theguardian.com/books/booksblog/2017/oct/21/barbellion-journal-disappointed-man-multiple-sclerosis-ms

illness, fatigue, depression

So those are the headlines! They're particularly annoying because when I last wrote I was at a three-day residential seminar on organisational development.

Which was, despite appearances, BRILLIANT.

This is due to four facts:

• The women leading the course, and all the other attendees, were amazingly knowledgeable and inspiring.
• The food was frankly ASTOUNDING.
• Working in the cultural sector is excellent.
• I'm actually *sotto voce* pretty good at my job.

I came back feeling totally inspired and re-energised (so much so that my dad asked if I was on drugs).
So it was particularly annoying that since then we got well and truly into the intra-family lurgy relay. Which led into the next two items on that list.

To cheer myself up I read a book my brother bought for me, Do No Harm by Henry Marsh.

Henry Marsh is a neurosurgeon, and the book is a collection of various stories from his career. Some of it is fairly graphic - his day job is spent slicing the tops off of people's heads, rummaging around inside and cutting out bits which are life-threatening, hopefully but not always without doing any lasting damage.

Mr Marsh has spent much of his career at the very top of his game but there are stories of patients who have been wrecked by surgery, sometimes at his hand. Even then he writes with a real sense of wonder at the magic which is the human brain:

I look down my operating microscope, feeling my way downwards through the soft white substance of the brain, feeling for the tumour. The idea that my sucker is moving through thought itself, through emotion and reason, that memories, dreams and reflections should consist of jelly, is simply too strange to understand.

I've always been the sort of person who can watch operation footage of pretty much any kind (I really can't stomach anything to do with the eyes, however) so the more graphic aspects didn't bother me.

It's a great book (although on a couple of occasions, he and his fellow doctors refer to MS in a way which made it sound like they thought it was a fate worse than a brain tumour, which was surprising to me. I know it's not a walk in the park but, y'know, I'm trying to keep my morale up over here).

Anyway, long story short - it made me realise that I've never seen the images from either of my two MRIs. Part of me REALLY wants to see them, although I hope it wouldn't kick in my latent hypochondria and make even more symptoms rise up.

So my question to you - have you seen your scans? How did it make you feel? Would you recommend it?

I don't know what I'd hope to acheive by seeing them, if anything. But knowing that somebody else has seen them is kind of weird. It's MY brain, after all.

TOP FACT I learned: the brain feels no pain. It's the engine which processes and translates feelings of pain from around the body but it actually contains no nerve endings. Which is why many brain operations can be done under a local anaesthetic.

stoicism: a blagger's guide

Recently - probably prompted by this excellent post on Avonex and 8 Wheels - I've gone back to re-read a book my brother bought me years ago, The Consolations of Philosophy by Alain de Boton.

I know that he can be quite a controversial character, accused of dumbing down unnecessarily. But I enjoyed this book (again) so I don't think I agree with the view of him as "a slapheaded, ruby-lipped pop philosopher who's forged a lucrative career stating the bleeding obvious".

As I've realised through my brief dips into the worlds of mindfulness, CBT and my everyday life, sometimes I NEED someone to state the bleeding obvious - say it to me enough times and it might just bloody stick.

Each chapter focuses on the works of a different philosopher -  Socrates, Epicurus, Seneca, Montaigne, Schopenhauer and Nietzsche - and showing how they can be of practical use in certain aspects of our lives. So there are philosophical consolations for Unpopularity, Not Having Enough Money, Inadequacy, Difficulties, A Broken Heart, as well as the one which really struck me, Frustration.

Now I can't really remember when my brother bought this book for me - it will have been a birthday or Christmas some years ago. But whereabouts in my MS journey I can't really place. And like another recent-ish re-read - Douglas Coupland's MS-related weepie Eleanor Rigby - the fact that I didn't take more from it beggars belief.

This chapter is devoted to the work of Seneca, a Roman philosopher who died in AD 65. Seneca was a man who took Stoicism to almost lunatic levels.

Although he had once been a favourite advisor to Nero, Seneca was (falsely) implicated in an assassination attempt on the emperor and was ordered to take his own life. So, after consoling his friends and family ("Where had their philosophy gone, he asked, and that resolution against impending misfortunes which they had encouraged in each other over so many years?" (1.)) and two fruitless initial attempts, he asked to be placed in a vapour-bath, "where he suffocated to death slowly, in torment but with equanimity" (2.)

Here's a Senecan definition of frustration:

Though the terrain of Frustration may be vast - from a stubbed toe to an untimely death - at the heart of every frustration lies a basic structure: the collision of a wish with an unyielding reality. (3.)

With the following illustration.

from Alain De Boton, The Consolations of Philosophy, p.80

I don't know about you but to me that seems like the perfect depiction of a natural response to being handed a diagnosis with any chronic illness. I can certainly see a lot of myself in there!

But it's not just the diagnosis, it's all the other little indignities which MS can pile on us. The walking sticks and the wheelchairs. The bladder-retraining programmes. The endless planning for once-simple trips and the many "sorry I can't go, I'm too tired"s. The cog-fog. It's no wonder we can get frustrated.

This great post on Weaving a Way is a perfect example of how I have felt, and frequently still feel.

Reading the chapter about Seneca, I can recognise the value in his stoical way of life. Anger is a kind of madness - "There is no swifter way to insanity" (4.) - resulting from an unrealistically optimistic view of the world.

I don't think that Stoicism is simply passive, fatalistic acceptance. We don't simply have to resign ourselves to "our lot". And this is a passage which really struck me:

We may be powerless to alter certain events, but we remain free to choose our attitude towards them (5.)

I'm not entirely sure I completely go along with the idea that, "That which you cannot reform, it is best to endure" (6.), but there's a lot in this way of thinking which I think is incredibly helpful (maybe bleeding obvious in the cold light of day but helpful nonetheless). 

Our brick wall, our unyielding reality, is the fact that we have a chronic, disabling illness with an uncertain prognosis. As soon as can begin to accept that, then we can focus on living to the best of our potential - seeking help when it's required, advocating for our condition.

All very highfalutin and I can hear my family members choking in disbelief - I am NOWHERE near this level-headed in real-life. But as a man who has a fairly hair-trigger relationship with outbursts of frustration, I'm constantly trying to be better.

...for Seneca, in so far as we can ever attain wisdom, it is by learning not to aggravate the world's obstinacy through our own responses, through spasms of rage, self-pity, anxiety, bitterness, self-righteousness and paranoia... we best endure those frustrations which we have prepared ourselves for and are hurt most by those we least expect and cannot fathom. (7.)

In Seneca's view, Philosophy's main job is "to prepare for our wishes the softest landing possible on the adamantine wall of reality" (8.)

from Alain De Boton, The Consolations of Philosophy, p.81

I bet he was GREAT FUN at parties.

Actual footnotes and everything:

De Botton, A. (2001). The Consolations of Philosophy. London: Penguin.
1. p.76
2. p.77
3. p.80
4. p.82 
5. p.109
6. p.111
7. p.81
8. p.81

none so blind

I was introduced to the writing of Douglas Coupland at exactly the right time .

I was midway through my degree and I'd realised I was going to come out more-or-less unemployable, I was living in a house with people who were developing some serious Class A drug habits, and I was winging my way towards a mid-20s breakdown. Because of that, I was ripe for the picking when I first read Generation X.

It's been a while since I've bought one of his books on faith - the law of diminishing returns seemed to set in - but I've got fond memories of Microserfs, Life After God and Girlfriend In A Coma in particular.

The other weekend I read a review of his new book (which got a pretty thorough kicking). It made me go back to another of his old books, Eleanor Rigby.

I read it shortly after it was published and I can't remember thinking much of it at the time. But I did remember the basic plot of a lonely 42-year-old woman who gets a phone call from the hospital, asking her to come and visit a young man who has her listed as his 'contact-in-case-of-emergency', and who turns out to be the son she gave up for adoption twenty-odd years previously. 

Oh, and he's got Primary Progressive MS. 

Re-reading it this last week, I enjoyed the book but the problem with his books is that they tend towards the self-parodic - the characters talk and think like the characters in a Douglas Coupland book, full of hip and zeitgeist-y pop-culture references. And they're prone to wallowing in an endless quest for greater meaning and/or spirituality in Godless times.

My main issue was that the character with MS - Jeremy - was obviously slated for tragic death, but this was offset by his charm and wit. Plus he had the benefit of having VISIONS, and the skill of singing songs backwards perfectly, because he's special.

So anyway on one level, the portrayal of MS is good because Jeremy is so comfortable with his condition, which is always labelled as Primary Progressive MS. But on the whole, I don't know why Coupland chose to make Jeremy a PwMS - what's HIS relationship to it?

 

I'm (naturally?) a bit uncomfortable with MS being used as a plot-device (think about it, it will always end tragically in any kind of fiction).
My favourite bit was this joke, which Jeremy tells to a guy who has just given him a job selling mattresses - at which Jeremy is obviously a NATURAL (see: special):

Jeremy asked, "How many people with MS does it take to put in a lightbulb?"

Ken did not know how many.

"Five million - one person to do it, and four million nine hundred and ninety-nine thousand nine hundred and ninety-nine to write depressing online web-logs."

The terminology is nicely dated (who says 'web-logs' anymore? Ah, the early noughties!) but I think it still applies... *ahem*.

Now interestingly (or not), the book came out in 2004 - which was the year after I'd had what I now see was an attack of MS symptoms, and the attack which set me on the road to my diagnosis. Seeing as I had pretty much all of these symptoms (listed in the book) at some point the previous year, why did I not make the link?

It's strange looking back that I didn't even make a SUBLIMINAL link to the symptoms that were bothering me - I'd had varying levels of numbness for at least 2-3 years by this point.

It's either me being a bit thick, or being so far in denial that I had no idea what was going on in my brain.
---
Searching for an image for this post, I came across the beggaring-belief Eleanor Rigby Hotel - the website doesn't say how many single beds there are here.

Really, who would want to stay in a hotel associated with "All the Lonely People"? Even with "crisp white linen and mellow soft furnishings"?