eskimo, arapaho, move their body to and fro

In "little things please little minds" news, both of my new walking sticks bear the following sticker. They never fail to raise a smile:

Not only do I love the idea of the CEO of the company chuckling to himself when he thought if it (is it a tribute or a wry bit of mockery?), it also always reminds me "Mick Hucknall's Pink Pancakes". 

This is a fictional (for the moment) recurring programme from Charlie Brooker's masterful "TV Go Home": 

• Mick Hucknall's Pink Pancakes, in which Mick Hucknall of Simply Red fame presses his testicles against various transparent surfaces, including shop windows, glass coffee tables and Chinese riot shields. Briefly succeeded by Mick Hucknall's Spud Tip Challenge, in which he quite simply balanced a baby new potato on the end of his penis.

Neither big nor clever, but you have to get your laughs when you can, right? 

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.

the thing with feathers

“Hope” is the thing with feathers -
That perches in the soul -
And sings the tune without the words -
And never stops - at all -

And sweetest - in the Gale - is heard -
And sore must be the storm -
That could abash the little Bird
That kept so many warm -

I’ve heard it in the chillest land -
And on the strangest Sea -
Yet - never - in Extremity,
It asked a crumb - of me.

(Emily Dickinson)

BBC One - Panorama: Can You Stop My MS?

It's really hard to know how to respond to this programme - in a very real sense the stories seem so incredibly hopeful and positive, surely a cure can't be too far away now?

in brief

There has been a bit too much real life to have any time to post anything recently. Yes, it's the annual "sorry I haven't blogged for ages" post!

My phone is full of scrabbled notes of things I did want to post, however. So let's clear them up!

• Thanks for the comments on my last post. Some of you will be pleased to know that, far from being retired, the sexy grey (Eastern Bloc) walking stick has now been joined by its twin. Double the sex appeal!
  Hilariously my love for these sticks was only increased when I saw that the company that supplies them is called SimplyMed. 
• New Years Resolutions. I absolutely don't agree with them. However on New Year's Eve me and the divine Mrs D had a nice quiet night and went through some questions from a dinner party set - where was the best place you went to this year, that kind of thing.
  Although it sounds a bit like organised fun, it was really nice to look back on the year and everything we've done. Obviously there were some resolution sheets and questions about things we wanted to give up. As a mostly clean-livin' sort of fella, I've promised to GIVE UP LESS OFTEN. 
• This was mostly prompted by watching my daughter. We had a couple of days in London over Christmas and she is SO FEARLESS and TENACIOUS. I genuinely don't know where she gets it from, being an "if at first you don't succeed, give up"-kind of guy. So there's that. Plus swimming more regularly, continuing with my physio, maybe even eventually the dreaded WALK TO WORK. Gah, that old chestnut. 
• A couple of weeks ago, we had a meeting at work with an associate who I've met her a few times and always enjoy seeing - she's kind-of spiky and brusque but always good value. I was having a wobbly day so was walking with a stick and using the lift to get to the room. She clocked my stick and asked me what I'd done, I used my usual "it's just something I need to use"-line which I assumed would close it down. But bless her, she was like a dog with a sore tooth - she could not leave it alone. I took a seat while everyone else went off to drinks (as she travels up from London for our meetings she always eat through them as it's the only chance she gets). And she just would not let it go -asking my work colleagues for more information which made them very uncomfortable. Eventually they said that Steve has a long-term health condition which should normally have shut it down) but she kept pressing.
  Eventually, my colleague said that she was really uncomfortable saying anything but Steve has this THING and if she wanted to know more she should talk to him.
  Cue the associate steaming into the room, giving me a huge hug, apologising profusely and asking loads of questions.
  It was great but I'm just glad that I only used one stick on this occasion. God knows how she would've reacted if I'd gone in with both sticks blazing.
• David Bowie died. It's been weird, I've never been so affected by a 'celebrity' death before, but this has floored me. What an amazing career, what an incredibly artful way to manage one's own death, what a legacy.

So that's that all cleared up. And the only reason I've got THIS done is because I'm on a Residential Course for my job - putting myself  "out there" a bit more for work and being more proactive is another resolution thing I've decided to do more of this year.

So now I'm going to sit and watch this Panorama MS special and probably have a bit of a cry.

blood and fire

Earlier this week I had my 3-month blood test to ensure that Tecfidera wasn't completely messing me up. It has been a breeze so far, and so much more non-intrusive than the injections I was on.

I've not really suffered any major side-effects at all - the closest I've come was two separate occasions when I've got a bit cocky and had taken the tablet after a light breakfast, which led to something very similar to a panic attack.

The solution? The first time I ate a bag of nuts, the second time I ate a Babybel [other conveniently wax-encased cheese snack products are - presumably - available]. In both cases the symptoms passed almost immediately.

So I was pretty much sleep-walking into my blood test. Also we've been caught up in School Nativity shows and all the other parts of the the incoming festive behemoth.

Which is why it came a bit of a shock when a friend of mine who started Tecfidera on the same day as me was told that her test had showed that her Liver function was elevated. She's been asked to go in for another test and if it's still elevated she'll have to look at other treatment options.

Obviously this sent me into a bit of a panic - which was utterly pointless. I mean, what could I do to reverse it anyway?

Anyway, long story short: when they called with my results, my Liver and Kidneys are doing fine on Tec - YAY.

My white blood cell count was slightly low, but this is apparently 'normal' - they just want to keep an eye on it, so I'll be getting a few blood bags so I can get some tests done with my local GP. Who will also be getting a strongly worded letter from the MS Nurse about Vitamin D levels (we mentioned the conversation we had over 2 years ago). She reiterated what Dr Gran had said at the Nottingham event in October, that 4,000 international units per day of Vitamin D is the recommended dosage.

We mentioned my mobility and my new wheelchair (did I mention that I've got a proper wheelchair? Well, surely you've seen it, right? It's been in the back of my car for the last couple of months at least... And before that it was in our kitchen. Plain as day), and my municipal grey walking stick (still bent due to the almighty strop I had in Italy this summer - I'm not proud).

We talked about other mobility options like crutches and managed to see a Physio. I had a go with crutches (just a bit weird and restricting) - the Physio said, "perhaps you're not ready for those yet...". And then I tried TWO brand new municipal grey walking sticks at the same time, and that was brilliant.

To be honest, I've never been sure which side I should have my stick in order to support my weaker left leg, so I spend a fair amount of time switching from side to side. And whichever side I use, I invariably get chronic pain in my shoulders.

Using two sticks I can really get a good head of steam - but like the man said, "don't get cocky".

I don't know if I'll be able to find time to write anything over the next couple of weeks (see above: BEHEMOTH), so if there's anyone out there, Happy Christmas and a Healthful New Year. Thanks for reading this far!

This is pretty much my favourite song from this year. It's also Barrack Obama's favourite tune. So that's another thing we have in common. Unsurprisingly this fantastic album is cleaning up in the end-of-year polls - it's nice to be right every once in a while!

the way i walk is just the way i walk

A colleague at work commented on the state of my shoes the other day:

No filters have been applied to this image.

I pointed out that, far from being targeted by persistent and precise bullies with an anti 'box-fresh' specialism, my left leg is the 'draggy one'. The muck on my shoe is just the dust I kick up when i walk.

I'd already noticed the state of my left shoe but it's pretty weird to be made to take a step back and consider the situation anew.

However you cut it, this can't be good, can it? 

It has now been 4 weeks since my last physio appointment. Have I been doing my exercises regularly enough? Probably not. And unsurprisingly my walking has been getting slightly more laboured. 

Could this be to do with the weather? Year-end exhaustion? My age? Or... perhaps... perhaps... perhaps.

As the physio rightly pointed out, I know what I need to do to get strength and control back. So I am trying to do this more regularly but can't seem to find more than a few minutes a day. Usually when I hit the snooze button on my alarm every morning.

On a loosely-work-related tip...

It's that time of year when people around me are dropping like flies - whether it be through some kind of lurgy or exhaustion as we drag our weary bones to the Christmas break. 

Now I'm not saying that I hold all the cards with regards to work-place sickness ("you think you've got a 'bit of a sniffle', do you? Oooh, I know just how you feel. It's just like me with my chronic progressive disabling health condition... *withering glare*").

But I do think there's a bit of a weird double-standard which plays out here (and it's probably in my head). 

It's like I don't want anyone to be able to say that I was playing my disabled card if I have a day away from the office

I very VERY rarely take any time off for illness. Not that I drag myself in unnecessarily if I'm clearly suffering with something contagious. But still, I can't remember the last time I had off sick.

And I certainly can't remember the last time I took a sick day without doing a little bit of work from home.

I don't mean it to sound like I'm doing a job that nobody else could do - it's really not as if I'm talking about brain surgery / rocket science. But there does seem to be something with me - it might not be anything to do with my condition but psychologically I feel like I need to give an extra few percent.

I'd be interested to know if any of you feel the same - whether it's a desire to work as much as you can while you still can or some weird self-flagellating need to prove that you can do it. Or a combination of the two.

I hope I'm right in assuming that we've all pretty much accepted that we're a mess of neuroses, right?

This video is all kinds of amazing however.

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.