Friday 30 October 2015

frankie machine has been shipwrecked on a desert island

Long-term visitors to IASB (as precisely nobody is referring to this website) may remember that four years ago, shortly after the birth of my daughter, I played keyboards and guitar for my friend's band, Frankie Machine, at the IndieTracks festival.

In the months prior to that gig, we'd rehearsed like I never have done for any other band. Point being, it's so much easier to just blast your way through things when you have the cover of the LOUD pedal. The thing about these songs is, there's really nowhere to hide - we're all playing delicate acoustic guitar parts, the keyboards are the same - so any mistakes really stick out!

(It has always reminded me of this Morrissey / Vini Reilly outake)

Anyway, after rehearsing the songs for a couple of months we did the gig and the plan was to record the songs super-quickly while they were fresh in our minds. But then real life got in the way - for good and bad - and the recordings stalled.

Rob (aka Frankie) lives 'round the corner from our old house but we still sent files backwards and forwards via DropBox as if we were taking part in some kind of transatlantic COLLAB - the upload speed was often so slow that it would have been quicker to walk to his house with the files on a USB stick.

The songs gradually started coming together and I spent a good portion of the intervening years badgering Rob/Frankie to finish them off, even offering my services as half of a cack-handed two-man drumming option as that seemed to be a sticking point. Plus I offered mixing assistance/unfounded opinions.

I'm really pleased to say the album is "coming out" (it seems very grand way to put it when it's self-released, mainly through Bandcamp but still). It's so nice to hear these songs finally finished and I'm really proud to be involved.

After years when I was the bossiest bugger (aka creative driving force) of any band I was part of, it's really cool to just turn up, add some little bits, and then leave it to someone else to write the damn things. With Johnny Domino, it basically took me SEVEN YEARS before I ceded any level of creative control! Fun for all the family.

Listen to the album in full (you can even Pay What You Like for it) here

As well as the songs which we learned up for the gig, Rob always likes to include a few little instrumental tracks and there are three on this album. In my mind, I recorded all my bits for these on the same night, which doesn't seem likely at all.

But when I listen to them, I'm downstairs in the study of our old house. Mrs. D is out for the night, Little Miss D is sleeping upstairs and I'm recording in the cold room of a house which is making us all fairly miserable. I've seen enough episodes of Classic Albums to know that environment can't help but have an influence on recordings in some way.

Even though listening to those tracks takes me right back, on the (almost) anniversary of us selling the house they might be my favourite bits on the album.

We've come a LONG way, baby.

Tuesday 27 October 2015

living with MS (event)

from WIRMS (worms in relapsing MS) presentation mentioned below
Rather than just stating the obvious, this blog's title was the name of a really interesting information day which we went to the other week. It was organised by the MS Society in conjunction with the Neurology team at Queen's Medical Centre.

"Breaking Boundaries in MS Research" was a really fascinating talk all about the work which the MS Society is carrying out at the moment.

I know I've been a bit snarky about them in the past, but this was not only an overview of how far MS treatments have come in a relatively short period of time but also a reminder that the MS Society is (predominately) a force for good in the universe. The only issue I (and others) had was ending this section with slides about bladder issues - after an early start and drinks on arrival.

I wasn't the only person having to make his excuses before this fascinating presentation finished.

Next up was a clinical overview of the work of the Neurology team at Nottingham University - it was lovely to see all our favourite Neurologists up on stage together! It was like some kind-of wonky-nerve-themed supergroup.

The best presentation from this was about the legendary "WIRMS (worms in relapsing MS)" trial - please follow that link as this was a brilliant example of how to do a PowerPoint presentation. Aside from it being really entertaining and engaging, its main hypothesis was "Could living cleaner actually make us sicker?" - fascinating stuff.

After a brief talk about Carer Strain and the benefits of mindfulness we went off for our (very nice) lunch. Which was only marred when a lady at our table started sorting out her (CLEAN) incontinence pants - on the table, as we ate.

I know I'm a bugger for oversharing, but can we please maintain some standards, people?

The afternoon was unfortunately fairly disappointing - a presentation by two of our favourite MS nurses turned into a grumpy Q&A, which some participants treated as though they were having a "private one-to-one with their Neurologist" (attrib. a friend who was also in attendance).

I'm not denying that their issues weren't real but this completely threw the presentation off course and it overran massively.

Our next session was with the brilliant Dr Gran - he was delightfully off-message in his discussion about lifestyle. I particularly liked the way he talked about how good the MS Trust's website and resources were at an MS Society event - I know they aren't mortal enemies fighting for ultimate power but still.

We also really appreciated the way he was incredibly open about making real suggestions, in particular on the amount of Vitamin D people with MS should be taking. After saying that everyone should get tested, he explained what the different levels actually meant (it turns out that my score of 38 - which my GP said was fine - was actually borderline deficient) - his recommendation for supplements was 4,000iu.

After that, we were knackered and as all that was left was a(nother bloody) Q&A so we made our excuses. It was also really great to catch-up with a couple of people who had started on Tecfidera at the same time as me - we're all doing fine, thanks.

I've been meaning to post this for ages (the event took place nearly two weeks ago) but I would recommend visiting this page and viewing the presentations if you get a chance.

And keep an eye out for any similar events near you - there's one coming up in Northampton this weekend (on Halloween!).

Thursday 15 October 2015

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

Tuesday 6 October 2015

third time's the charm

As part of #life_sortout_2015, I've also been having some Physiotherapy. This is the third time I've done it (to tackle pretty much the same issues) but each time the therapist has had a completely different approach.

Firstly the focus was combating foot drop and my draggy left foot. The next time we focused on increasing strength in (and control of) my left leg. This time the focus has been on increasing core strength.

I've mentioned previously that most adults (well, me at least) just tend to sleepwalk through the amazing machine which is the human body. I know I'm guilty of taking it for granted (see: third round of Physio).

But I'm starting to see how it all links together. If I can continue to work on my core then everything else should improve.

(I must admit that talking about "my core" just feels a bit weird but bear with me while I try to sound vaguely knowledgeable...)

At my last session on Friday, we were talking about how it all ties in and I realised that we were working on Fundamentals of movement, and my Physio said this was exactly right. I think it's these things that people can get lazy about and take for granted.

FULL DISCLOSURE: I began typing this on my phone while sat twisted round in a chair with my legs crossed...

I tend to have my sessions first thing in the morning. In that way I can avoid having to take too much extra time off work for appointments - as is probably apparent, I've had a lot over the last few months. This is a good way to wake up but can be pretty knackering.

I now just need to focus on trying to fit in doing some regular work on my own at home. I've tried to involve Little Miss Domino but she says my exercises [mostly breathing slowly, tensing muscles in my guts - FOUR levels! - and trying to control steady movements of my legs] are "boring".

And I guess they are for her (FYI her suggested Yoga poses mostly involve leaping around doing combative actions and/or breakdance freezes). But my next session should be the final one of this round so I need to make sure I keep working on it, boring or not.

Use it or lose it! YOLO!* and so on and so on and so on.

* I can't believe I used Y*L* on here - I'm so very sorry.