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.

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!).

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

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.

remember what the dormouse said

This post has been forming in my head for over a week but that pesky REAL LIFE kept getting in the way. Hence writing this at 5 to midnight on a Thursday.

[*shakes fist at reality - again*]

Anyway as I mentioned last time, we poddled off to have a talk from the Queens Medical Centre MS Nurses last week. There were only three other people with MS there, but it was a bit weird for me to be the most obviously disabled person in the room - walking with a stick, that kind of thing.

We had a talk about the various foods which have been shown to mitigate various side-effects. And I quote from the handout:

[to offset Gastrointestinal side effects such as diarrhoea, abdominal pain and nausea]

Eat fat and protein rich foods before capsule e.g. eggs, bacon, sausages, nuts, peanut butter, cheeses (Baby Bel), avocado, full fat yoghurt.

Then we made our way downstairs to get some baseline bloods taken before going to the Pharmacy to pick up 5 weeks worth of Tecfidera - one week at half-strength (120mg capsules) and four weeks at full strength (240mg).

We were told to wait until we'd heard from the MS Nurses before taking our first dose - the bloods were also taken to see if our white blood cell count was so low as to make starting a course of Tecfidera dangerous (thankfully my wife was there to hear this in person - I was all set to go home, stuff my face with bacon and eggs, then neck a capsule - selective hearing strikes again).

When the MS nurse called the next day, she said that my white cell count was back in the 'normal' zone (I'm not even going to try to sound like I know what I'm on about, ok?), which was a relief as my blood tests in June (when I was on Rebif) were fairly unhealthy.

So the following morning I checked and rechecked (and then double-rechecked) that I was taking a 120mg capsule and 10 minutes later it was down the hatch.

The most common initial side effect is said to be some flushing - other than feeling a bit warm after that first capsule, the only other thing was a slight feeling of nausea one night.

I've been trying to watch what I eat - but I must admit I've never really got on with Peanut Butter. But after a childhood as an immensely fussy eater (I didn't eat CHEESE until I went to university, and even then it was only because I'd reached the bottom of the food parcel my parents had sent me away with), I don't like to let things beat me.

On the first day I tried spreading it on a slice of toast (revolting). Then I noticed that Peanut Butter doesn't actually contain any butter (I know, what was I thinking) - so I tried it on a slice of toast with butter (disgusting).

So I lathered the rest of the slice with Jam - now you're talking.

SERVING SUGGESTION

BREAKFAST of CHAMPIONS

Yes, I know that my PB and J is considerably more J than PB.

And it's not something I can eat every day - I just take a capsule halfway through my breakfast (whatever it is) and the same again during my evening meal. I've also joined a closed Facebook group for UK Tecfidera patients which is great - really active and supportive. Although I'm trying hard not to get too excited when people talk about positive side-effects and improvements to their walking and energy levels (but still...).

This week has been a good time to change meds, as this was the week my daughter started school - you think it's scary? We think it's TERRIFYING. But there has been a lot of other stuff to think about.

Tomorrow I start on two capsules a day at the full dosage - I've told my boss that if I come into work a darker shade of beetroot, he's allowed one jokey comment. But no more.

wheel's on fire

We've just had a week away in Italy - this is the first time we've been abroad in six years and the first time we've flown with Young Miss Domino. Any worries we might have had about her were unfounded - I looked over at her when we were taking off and she gave me a thumbs-up while grinning from ear to ear. Furthermore she ate pretty much everything which was put in front of her and charmed any Italian waiter she came across.

We went on holiday with my in-laws which certainly took a lot of the pressure off. Where we were staying was a flat lakeside resort but our hotel was a good mile away from the centre of town.

On the first day I managed this fairly easily (lots of places to sit down along the way), caught a boat to another resort, walked round there, caught another boat then walked back to our hotel. After a couple of lazy poolside days, I tried the walk again in the evening.

This was the low point of the holiday - there's a phrase which we tend to use whenever I walk anywhere: "I've / Steve's been doing some good walking". Well, on this night I was NOT walking good.

I got super-frustrated, proper pissed off and everyone was upset to see me struggling. Me and Mrs.D had a chat and decided to look into hiring a wheelchair for the rest of the holiday - we'd talked about this before we left and though I can be fairly stoical about the fact that a chair is only a tool to help you live your life, it was still a pretty major psychological step for me. But the only alternative was me missing out on half of the holiday for the sake of three poxy Euros a day.

The hotel staff were amazing especially the guy on reception who sorted it all out for us (he could speak FIVE languages, and speak them well - unbelievable and shaming).

I can't deny it was a weird feeling being in the chair (it also made me feel a little bit sick) but at least Ms.D said my chair was "cool".

It was pretty shocking how little other people noticed the chair, and I did get a bit (not so) passive-aggressive with pedestrians.

The pavements in this area of Italy were pretty good but every know and again there would be a pothole or raised cobble - I imagine that this is not news to people who use wheelchairs regularly and / or full time but by the end of the week I (and my father-in-law, my regular driver) had pretty much got the lay of the land - which drop-kerbs were going to hurt me or the chair, which tree roots to approach at a certain angle.

And once we'd got to our selected destination I was free to walk about as much as I wanted to or was able.

It IS a tool, and one which I'll have less qualms about using in the future.

---

Tomorrow we go to the Queens Medical Centre to talk to the MS nurse team about Tecfidera. If all goes to plan I'll leave there with my first stash of tablets.

The two weeks off Rebif have (touches wood furiously) passed without much incident. And if I do find myself thinking about the good old days, I can just look at the massive injection-site sore on my belly (no pictures) from the last time I injected there - over FOUR WEEKS ago, and it hasn't stopped itching yet.

Which has obviously given me the following earworm - you're very welcome!



Roll on tomorrow! *

* genuinely unconscious punning here - sorry

Rebif: a breakup letter - "it's not me, it's you"

Dear Rebif,

I thought this would be a hard letter to write. We've been together for 5 years now and we've had some good times.

You were exciting when we first hooked up - I remember the thrill of those first injections, how much I looked forward to seeing you again.

I loved the clunky Eastern Bloc stylings of the RebiSmart auto-injector, while at the same time using apps to track my injection sites made me feel like I was living in the future. It was the best of both worlds, and on top of all that I was taking charge of my life and the progression of my disease.

And I can't deny you've been good to me - thanks for helping me remain relapse-free since 2012.

But things just haven't been working between us lately - you can't deny it.

I would never sneak around behind your back. But I'm ready for the next stage of my life to begin. I have been getting closer to Tecfidera and I'm hoping things will work out between us. I had hoped you would be happy for us, after all we've been through.

But the last couple of months - even though the writing on the wall is plain for all to see - you've been kicking and screaming like a petulant child.

The injection-site sores, the bleeding, the endless flu-like symptoms, the weakness, the swollen saucer-like lumps under my skin, the bruises.  Surely you can see that it has to stop.

Later this week I'll have my last injection. I'll be taking two weeks off - to get my head together and flush you out of my system. That sounds harsh but it's the way it has to be.

Hopefully I'll then begin my Tecfidera treatment. But there's a chance it might not be possible - it will depend on the results of my blood tests - we'll have to see what happens, I guess.

Thanks for being there over the last five years. I really do appreciate the relapse-free years which you gave me.

But after the last couple of months, I'm officially over you.

Two more shots to go.

Much love,

Steve
x

PLEASE NOTE:
These are my personal experiences of living on Rebif / beta interferon. It worked for a long time and has kept me healthy. I'm incredibly lucky that it was even an option for me, let alone one which I've broadly tolerated. The change in medication has only come about through consultation with MS Nurses and Specialist Neurologists - again, I know how lucky I am.

And changing my medication might not even alter the natural progression of my MS down the line. But it's got to be worth a shot of if makes day to-day life a little easier.

See you on the other side!

lucky bugger

Just a quick post to say that the other week I was visited at work by an Occupational Therapist - actually the same OT who visited me a while back.

We had a good chat about what had been going on and she set about looking about my work environment - previously she had suggested I get a swanky new chair and funky monitor holder, so she was pleased to see these in action.

Then she had a look at the layout of the office. Barring a couple of drawers and a filing cabinet, this is what the room looked like - I know, these illustrations are frankly amazing - and I'm not even a professional draughtsman!

layout one

She watched me walking through the door and getting to my desk. And said with beautiful simplicity, "Why don't you move your desk over?"

It's always annoying when someone points out something so blindingly obvious. But it's amazing the difference it has made. Check it out (honestly, no training or anything - you could almost be there...):

layout two

Another way in which I'm incredibly lucky is that, on the afternoon before he went on holiday, my boss helped to get the room straightened out - crawling around on the floor, trailing cable, making sure it worked.

I know there was probably a bit of pre-holiday demob happiness at work but still - he didn't need to.

As I've said before: COME AND WORK IN THE ARTS - the pay is shit, the perks are few but you'll [mostly] end up working with nice people.

up and down like a bride's nightie

The magnificent John Shuttleworth (Sheffield's premier songsmith) yet again sums up my life. Warning: this song contains a slightly blue lyric.



So I finally got a letter from the neurologist who had eventually seen my MRI. At the top of the letter was the following titbit:

In a truly mind-boggling display of my inability to see the bright side, I read this as I don’t have Secondary Progressive MS YET.

After being told to actually read the bloody letter properly, I realised that this was the same as me saying that I don’t have cancer or ebola yet – e.g. while this is true at this point in time, it is no more useful than me saying that I haven’t been run over by a car YET or I haven't lost a limb in a bizarre gardening accident YET.

So I eventually accepted that this was the good news that I hadn’t allowed myself to expect.

(although the reference to a "very pleasant gentleman" made me double check that this letter wasn't intended for someone else)

I think my problem is that I know the way that MS tends to play out – 10 years after an initial diagnosis of relapsing remitting MS the majority of people (as high as 80%) will be re-diagnosed with Secondary Progressive MS. Subconsciously I was trying to prepare myself for the worst. And yes, I know that this is probably the way that this beast is going to play out but it's not particularly 'mindful'. Or healthy.

So earlier this week I toddled off to the MS Nurses to talk about my switch to Tecfidera... which was a less upbeat meeting than the one we had before.

The Nurse wasn't quite as sold by my need to change medication, quoting much more conservative relapse-rate stats, as well as pointing out the two (so far) instances of Progressive multifocal leukoencephalopathy (PML) in people taking Tecfidera - one fatal.

An aside: PML would be the correct acronym for 'Piss Myself Laughing' - and yet PMSL seems to be the favoured choice amongst 'young people' in their illiterate texting. What a world we live in...

Seriously - these are the things which wind me up! I am an OLD MAN.

According to the nurse, in these cases the doctors hadn't known to check the white blood cell count of patients before starting the therapy.

I'd gone into this meeting expecting to be sent away with a prescription so this was a bit of a kick in the teeth. But I went off to have my bloods taken there and then, prompting the following waiting-room hilarity...

I'm a teenage phlebotomy #ramones_based_hospital_fun pic.twitter.com/bKLbWTqM5w

— Steve Woodward (@stevedomino) August 3, 2015

Another Aside: There's an Italian-themed coffee shop by the entrance of the hospital. I repeat - this is in a HOSPITAL. This coffee shop is called Fonta Nelle... FONTA NELLE... Fontanelle? Just me?

So I was really pleased to get a call from the MS Nurse team yesterday - although my white blood cell count is on the low side, this might be a side-effect of Rebif. Aside from that, there's no reason for me not to switch meds.Yay.

I'll take a two-week break from Rebif (handily coinciding with a holiday we're taking) then toddle off to the QMC for more blood tests, another chance to get any further questions answered, and then I'll hopefully walk out with my first load of pills.

I know that this could be the start of a whole OTHER world of issues but I am so over injecting. The side effects from the pills can't be as bad - can they??

frustration

image from http://www.samstoybox.com/

I guess that I was expecting a bit too much from my annual MS MOT, which happened earlier this week. I've been trying to gently process my thoughts ever since.

In light of our conversation with the MS Nurse the other week, my MRI scan last month, my physio appointments, plus a visit from an occupational therapist.... I was hoping for some clear answers, a roadmap of next steps, maybe a change in medication.

But obviously we're talking about MS here - clear answers and a roadmap? Don't be silly.

First up - the Neurologist we saw was absolutely brilliant and answered our questions clearly and with great patience.

Unfortunately, he didn't have any results from my MRI, which was frustrating but can't be helped.

But without any hard evidence, he can only base his opinion on a few physical tests in his office and what we tell him has been going on. And this is where the problems begin.

My wife and I left his office with two completely opposing ideas about what we heard!

HER TAKE:
It sounds like Steve might be heading into a transitional phase between Relapsing & Remitting MS and Secondary Progressive MS - but without any evidence (which will come from the MRI) we can't know either way - everyone's MS journey is completely individual so let's hold off from making any changes to medication until we know a bit more about what's going on. It's not a done deal by any stretch of the imagination.

MY TAKE:
It sounds like Steve is heading into the transitional phase from Relapsing & Remitting MS and Secondary Progressive MS - so there's no point in making any changes to medication. It's probably a done deal but the MRI will tell us more about how F**KED you really are.

And there, distilled, is the essence of our marriage. I think we can all agree that she's a lucky lady.

So now we wait a bit more. The Neuropathic Pain I mentioned last time might ironically be the brightest spot on the horizon, at least indicating that my MS is active. What a crazy condition this is.

But more GENUINELY positive is my Physiotherapy.

It's bloody exhausting but the weekly noticeable improvements to my walking speed and stamina are really giving me the boot up my (lazy) arse which I apparently need.

pinch, punch, first of the month

This may turn into one of those posts which I start with no clear idea of the outcome. But rambling discursiveness is what you come here for, right?

As part of my drive to get STUFF SORTED OUT, I recently had an MRI scan. This is my first since the one which led to my diagnosis 10 years ago. That experience has loomed large in my head ever since - probably (definitely?) in an exaggerated format...

FOR EXAMPLE: When I think about that, the MRI is like something from 1960s Russia - a darkened room with a window onto a control room with two faceless white lab-coated technicians in it. The MRI itself is a dark, airless metal tube.

I know full well that my memory is employing an amount of artistic license...

This time, the room was filled with natural daylight - the machine itself pumped a good amount of fresh air into my face. The (bloody lovely) technicians offered me a choice of radio stations so I plumped for the Radcliffe and Maconie show on BBC 6 Music - their trademarked brand of whiffle and banter was the perfect soundtrack to what was actually a pleasant experience.

I think it helped that also waiting for an MRI was a no-more-than-three-year-old child - he didn't really know what was going on but the look of fear on his mother's face convinced me to MAN THE F**K UP. I've thought about him often since this happened.

So now I wait for my annual MS MOT which takes place next week where we'll discuss what happens next as far as Disease Modifying Therapies are concerned.

I'll be honest, I'm feeling a LOT of THE FEAR.

Are the problems with my walking (which has really degenerated a terrifying amount)...:

• Related to my age?
• Because I've not been doing any regular walking to speak of? (a correlation to the "Use It Or Lose It" argument which I've used in the past)

Or is it rather...

• Because I've transitioned into a re-diagnosis of Secondary Progressive Multiple Sclerosis?

I've started another course of Physio which has shown me that I really have no core strength at all, which would imply that I can turn it around if I want to. And after my session earlier this week, my Physio commented that I was walking better, as did my boss when I returned to work. So this all gives me some hope (and no little motivation to stay focused).

But... but... but... see my third point above.

A new symptom (Neuropathic Pain - in my case a feeling like there's burning hot ash somewhere under the skin on my back) is also cause for concern, coupled with the fact that I haven't had a relapse for 3-or-so years.

And here I was thinking this was a good thing.

Speaking of good news (which we kind-of weren't), yesterday was the first time that I was permitted to wear shorts at work. I'm always more comfortable with my legs out but as a member of the Senior Management Team (and fully paid up member of the CULTURAL ELITE), such activities are frowned upon.

But, y'know, heat intolerance and suchlike.

a historical artefact [TLDR]

Among my group of friends in the pre-internet age, much of our cultural and social capital was tied up in how much we knew about music, obscure or otherwise (preferably obscure). Yes, we could be more than a little bit intimidatingly smart-arse-y about it, but I have many fond memories of sitting in pubs, drinking, (and even smoking) while shooting the shit about music.

Back in the day we would make compilation tapes and CDs for each other and I'd been visiting Music blogs like Spoilt Victorian Child, Bubblegum Machine, You Ain't No Picasso for a while. So eventually, our own brand of musical one-upmanship led to the creation of Domino Rally, enabling the members of our band Johnny Domino to talk about the music we were into.

To me, this was a more altruistic time of music enthusiasts writing about artists they loved, sharing one or two tracks, linking to the artist and encouraging people to actually buy music. I'm not going to pretend I haven't benefited from bulk-downloading of pirated music but to us it was more a kind of recommendation service we were providing. Plus I still like actually buying stuff.

In the back of my mind, I kind-of thought that, if we talked about it enough, we'd strike up a conversation with an audience who might be interested in the music we were making ourselves.

Did it work? Well, we did receive a lot of comments on the blog and struck up a number of transient faceless online friendships. But did this translate into sales of CDs?

Ask yourself this question: how many Johnny Domino CDs are in your house? 'Cos we've got f**king loads of them!

Anyway, about a year and a half after starting the blog, Johnny Domino played their last gig - it became more and more difficult for us to get together. (Maybe we also felt slightly ridiculous being men of a certain age trying to make it playing music. Who knows.)

At one point, I received a (fake?) Cease and Desist notice from Google, panicked and removed all the posts. So for no good reason whatsoever over the last couple of years I've been slowly reuploading all the articles, replacing the MP3 files with Spotify / YouTube embeds where available.

Here's a playlist! Only the first 200 songs available by this embed but here's the link to 337 songs and nearly 22 hours of music.



This really was as wild as our Wild Young Days got, but I've loved re-reading the posts - some of the writing is actually pretty good and I still love a lot of the music (with a handful of exceptions). The comments we received haven't been reuploaded yet - another time, maybe.

It seems to me that these days music is everywhere, more portable than ever, and more accessible. But somehow it seems to mean a bit less. Not to me, I must add, and maybe not to you.

I still buy a lot of music in a variety of formats, and I still get a thrill from hearing something new and different - I'm going to be 42 in a week or so, so I genuinely love hearing something which confuses me, and which is a reminder that I'm not really the target market - it's good to know that this can still happen!

As an illustration, a recent WTF moment was when I heard the following song (which I really like now, despite - or because - it sounds like it was recorded on someone's phone).

down the rabbit hole

So it's probably two weeks or so since me and Mrs. D went to see the lovely MS Nurse Team at the Queen's Medical Centre in Nottingham.

While we were waiting outside we read through a booklet which was about the type of treatments which are available on the NHS - worryingly they were all injection-based, so all just variations on a theme.

Like I mentioned before, the reason for seeing them was because I'd been noticing that the side-effects of my Rebif injections were getting more and more debilitating - plus they seemed to be lasting forever.

With injections on Monday, Wednesday, Thursday, I would be good on Sunday if I was very lucky.

But in my annual meeting with the Neurologist last March, we talked all this through and he said that Rebif was still a first-line treatment.

When we got in, we explained all this to the MS Nurse, who said that the booklet we were looking at was really out of date - they don't tend to prescribe many injection-based treatments, preferring to get people started on oral therapies (the first choice of many patients too, I'm sure!).

She also mentioned the fact that people on some beta interferon injections can sometimes start to produce neutralising antibodies - so reduce the effectiveness of these drugs. So this might be a reason why my side-effects were getting more intense.

This particular nurse (Maxine) always seems to have a tote bag with her which is full of booklets for different therapies, and she did not disappoint this time - see the image on this previous post.

(The MS Trust booklet is particularly good)

We talked the options through, explained our concerns and my side-effects, and were particularly interested in Tecfidera (dimethyl fumarate), which has been shown to reduce replaces by up to FIFTY PERCENT - beating the "by about a third" which gets bandied about for the more old-skool injection therapies. I've since confirmed with the MS team that this is where I want to go, so the wheels are now in motion.

The other thing we talked about was my ongoing problems walking and the drug Fampyra (called Ampyra in the US), which we mentioned as an outside possibility - Maxine is a real force of nature and said that she didn't see why I couldn't go on this too.

By this point we were both in tears - the last few months have been really hard and not-a-little worrying for us but now we were in a position to make some changes for the better. Normally I would have just waited for my until my annual Neuro appointment (which is in July)!

Maxine vowed to talk the Neuro I'll be seeing, and to arrange another MRI for me - I haven't had one since the MRI which led to my initial diagnosis and we need to check my lesions, especially because I've recently been experiencing a bit of new-ish Neuropathic Pain (mostly intense burning beneath the skin).

When I said that I found my previous MRI experience traumatic (to say the least), she admitted that she did too and suggested that I get sedated for my next one (date TBC).

So a really positive experience - and now I wait to hear from them about when I can (hopefully) get off Rebif.

GOD SAVE THE NHS - in light of the recent election, I've just written to my new MP from the http://www.treatmerightms.org.uk/ website.

a prime location

Way back when I was first diagnosed, we asked the first neurologist we saw if he thought there was anything to gain by visiting one of the local support groups. His response?

"I'd only go along if you want to get really depressed."

His logic was that, as a new member of the 'club' — and one who was displaying relatively few external symptoms at the time — the other people at these meetings were likely to be in a worse state than me. So not entirely helpful for a new recruit, and so we decided to give it a miss.

However, in my recent drive to take MS by the scruff of its neck I decided to "feel the fear and do it anyway".

An aside: the centre - also known as Lilian Prime House - has an imposing frontage (see image) and before the advent of Google Street View was nigh-on impossible to find - for me, anyway!

The Derby MS Centre has a programme of activities and also hosts monthly open days, and I went along to one the other week.

The centre staff were all lovely and welcoming (and once inside the building it certainly feels less utilitarian). And the people who were attending were… well, weirdly similar to me. For a start they were all male — one of them even had the same walking stick!

Aside from that the only other attendees were the wife and daughter of a man diagnosed with MS 10-or-so years ago who refused to discuss the matter (he was conspicuous in his absence). I know everyone deals with their stuff differently — and I'm not pretending that I've got all this shit sorted by any stretch of the imagination — but it was pretty heartbreaking to see the effect that shutting them out was having on his wife in particular.

I didn't have time to stay for a Chair Yoga demo so I went along to this last week — and it was pretty hardcore! I know I shouldn't have been surprised.

I was okay as far as the upper body stuff was concerned but when we moved onto legs and feet, it was a sobering reminder of how weak my left leg is.
I was the only guy there, and the particularly sparky lady next to me said that she was glad I'd come along as "if there's one thing I can't abide it's a roomful of women".

I'd planned that this was going to be a weekly thing but the sessions only take place during the day. And on that particular day, my lunch hour ended up being more like two hours in all, so it's not really something I can do if I want to keep my job. Plus I had to work extra at the end of the day to make up for it - which was pretty tiring!

The other people there were older, and were either wheelchair users or moved with walkers. Most of them were brought along by carers, so I can fairly-confidently assume that I was the only one who was going back to work afterwards. 

On top of this, Lilian Prime House is open Monday, Wednesday and Thursday, between the hours of 10 am and 4pm.

Thinking about this later I couldn't help remembering the MS Society estimate I mentioned a while back — that only "between 23 and 32 per cent of people with MS are in employment".

What the hell do the rest of us do?

a little light reading

To be continued…

emotional weather report

this great illustration is by Stephanie Ayers (image taken from here)

And a line of thunderstorms was developing in the early morning hours
Ahead of a slow moving cold front, cold-blooded
With tornado watches issued shortly before noon Sunday
For the areas including the western region of my mental health
And the northern portion of my ability to deal rationally
With my disconcerted precarious emotional situation
It's cold out there
- by the mighty Tom Waits

Like most people in the crazy world we call WORK, whenever I have some time booked off I tend to work way harder than I would normally. With my (our?) peculiarly compromised health condition, by the time I get round to my days/weeks off, I REALLY need some time off.

Don't get me wrong, we had a great time at Center Parcs last month, as I mentioned yesterday. But it coincided with a time which was one of the lowest I've had in a few years. Physically, I was having real problems getting around - on top of that (or maybe BECAUSE of that), I allowed my old bladder issues to rise up. It's astonishing how many 'just in case' trips to the loo you can have! It's easy to make light of it now, but it was a bit of a kicker (to put it mildly).

It was hard to feel like I was letting my family down and becoming a millstone. And by the same token, it was hard for Mrs D to see me struggling and succumbing to old problems.

On top of all that it must have been really frustrating to see me not taking better care of myself, especially with regards to fatigue management - the parking issue I covered before was a case in point and I really didn't need to do any of that walking around.

After a rough couple of days we determined to have a good time and overall we did. But it cast a shadow, which carried over into our return.

Over the next two weeks I noticed that the side effects from my Rebif injections were really starting to be debilitating. Like most people on this brand of beta interferon, I inject on Monday, Wednesday and Friday. But recently I'd been feeling BLOODY AWFUL on Tuesday, Thursday and Friday. So at best I was good for one day a week!

I've been noticing on Twitter recently that a number of Rebif users have been jumping ship for newer, less-intrusive treatments - a lot of them oral therapies.

So I put in a call to my MS Nurse team, described what seems to be going on, and I have an appointment with them next week to talk about my options.

In a post-slump period of TAKING NAMES AND KICKING ARSES I'm also interested to see what the deal is with Fampyra, the mythical currently-unavailable-on-the-NHS (?) walking treatment.

As I've been struggling with my walking in particular*, I've also asked my GP to refer me back to the Physio. And as requested by my boss, I'm getting an occupational therapist to look at my workstation to see if there are any modifications which could make things a bit easier..

Who knows how long this energetic brand of proactivity will last? Let's find out!

* incidentally, please don't ask about the walking to work, it's really gone out the window and it makes me feel worse than anything - especially when SwissLet of this parish is running the bloody London Marathon this weekend for the MS Trust - I've slung him a few quid, so should you.

center parcs 2: electric boogaloo

Apologies for the delay in posting this (very brief) update about our recent return to Center Parcs.

This is due in no small part to the inclusion of this photo of a squirrel, which I took at the back of our lodge. I got a media release form signed at the time (OBVIOUSLY) but when I said I was going to put it on the blog it really started getting ugly.

Honestly, everything at Center Parcs is SO monetised... I've had to deal with the squirrel's agent (and its Union), and the negotiations over the usage fee [way more than I ever imagined!] - at one point I considered pixelating his face, but even then it's so obvious who it is - honestly, I wish I'd never bothered, but it's a nice picture - so there we go.

A word of advice: if you want to take cutesy pictures at Center Parcs, think through what value it's really going to bring. Is it worth it?

Anyway, headline figures from CP15 - it's still great and OVERALL we had a great time (I'll explain the qualification in a later post), but the communication from CP about accessibility is still confusing at best.

Long-term visitors may remember what our biggest bugbear was previously:

The day before we came home, we went into Guest Services to see about arranging a bus to pick me up in order to collect our car in the morning - check-out was an ungodly 10am and we thought this might be a handy bit of fatigue management - certainly better than walking across the park, driving to the lodge, loading up, driving home...

I called security... and they said that they didn't have any drivers in for the next day. Considering the fact that the arrivals and departures are pretty much all on the same day, this seemed crazy. I explained that the reason I was enquiring about the bus was that I am disabled (response: "Are you in a wheelchair, sir?" Nurrrr....), and then he asked if I had a Blue Badge, because if I did, I could park outside our lodge overnight and load up in the morning.

Again, I understand that Center Parcs is a car-less utopia (and it was one of the most attractive things about it for us) - but it would've removed a lot of our worries about packing up and leaving with a 3-year-old at TEN A.M, followed by an (admittedly short) drive home if someone had mentioned this in advance. Maybe they don't want people to take the piss, which we certainly didn't want to.

So this time we knew what the situation was and the night before we came home I went to Guest Services to double-check that this was all cool. They said that it was, although as I had a Disabled Driver's Blue Badge (Hi there!), I could have just parked up outside our lodge all week.

[!]

Anyway, I found my car and drove out to the front gate, explained to the security guard what I was doing, and when they clocked my Blue Badge, they said, "just so you know for next time, you can leave your car outside your accommodation for the week. The only time it'd be a problem would be if you started using it to get around the park during your stay".

[!]

Like I said before, one of the things I like about Center Parcs is the lack of cars, so it's not as if I'd be using it to cruise up to the Sub-Tropical Swimming Pool or the Pancake House. Plus as I mentioned before, it really is all very accessible, so we wouldn't need it. And in saying this, I totally understand that my accessibility needs might be considerably less than those of other people.

But as it stands we have a situation when disabled guests are forced to pay additional fees for accessible accommodation in order to manage fatigue (for a HYPER-SPECIFIC example). In our own situation, the rules with regards to parking were so unclear that I unloaded the car at our accommodation, drove around to find a parking space, walked back to the lodge and wiped myself out for the first full day of our stay.

The emotional and psychic fall-out from this particular situation will be covered more fully in my next post!

nothing to see here

Well, no news is good news.

My MS seems to be behaving itself on the whole - which is great obviously, but doesn't make for a massively compelling blog.

Some you win, some you lose!

The weirdest thing which has happened recently is I've found myself thinking more and more about our old house and our delightful neighbours. I know that Mrs.D is feeling the same - she even had a dream about it last night.

I guess that this time last year we were right in the middle of it all [literally] - and we're so much happier where we are now. We have lovely neighbours on both sides, about whom we know only the barest of details - which is exactly how we want it.

We moved into our new house in November, after which we went straight into a family wedding and Christmas. It's odd but this is probably the first bit of down-time we've had.

And in a way, the whole situation was so awful, it's almost like we have a mild version of PTSD - I don't like looking at photos of us in the house from last year. Even the happy ones, I think "oh yeah, that was just before THAT happened".

To have to deal with that level of upheaval and disruption in the last year before our little girl goes to school... it just makes me furious thinking about it! To be honest, I think it's amazing that our marriage survived, never mind the fact that I didn't have some kind of MS episode.

On a recent weekend we went to see my parents before they went on holiday and it reminded me that around this time last year, my parents were away so the three of us went and stayed at their place - just to be out of our house and to get a guaranteed decent night's sleep!

Last week we were at Center Parcs in Sherwood again - I have more to say about our break later but this will be the last time we won't have to pay the frankly ASTONISHING prices which they charge during the school holidays.

When we went there last year, it was at a time when we thought that SHE was going to be evicted - when we returned it was obvious that this was not going to happen.

I know it's not healthy to focus on this stuff but it's amazing how raw it still is for us all. Consider this a cleaning out of my closet.

Having said that, I might re-upload some bits of this blog which I removed in the run-up to the house sale - I know that some of you JACKALS will get a kick out of that..! And I might find it a little cathartic, too.

Onwards and upwards!

but i don't want to be THAT guy

And after newbie’s euphoria comes… this.

Last night was my second session of Tai Chi. I saw the tutor beforehand, who told me that everybody forgets everything they’ve learnt. In fact, she said that when I went home that evening, I would be able to remember what we did last week – but nothing from this week. Which turned out to be true.

I really enjoyed the warm up and I get the fact that what seems complicated at the moment will eventually (hopefully?) turn into muscle memory as opposed to the Directors Cut of King Arthur On Ice.

However, the main thing I took away from last night was how appalling my balance is and how incredibly weak my legs are. And it made me feel very, very self-conscious in a room full of strangers.

I know – BLOGGER GUILTY OF SOLIPSISM – steps back in amazement, I’ve never heard the like, etc.

And I don’t want to be a master of Tai Chi – but I do want to be a little less shit.

Like I said, the warm up and the focus on breathing are great – it’s just when you have to string together phrases and are required to place your foot down slowly heel-to-toe. The word galumphing springs to mind. And I have literally no idea where my hands are meant to be at any point.

In reality, I know that no-one in that room is going to be marking me down – we’re all too busy looking at our own feet.

The reason I’m doing this is to try to stave off my (inevitable?) physical decline, which feels more and more noticeable (and, yes, inevitable). The idea of leaving the house without my stick and/or car seems frankly ridiculous. But I need to keep moving – otherwise I’ll just stop, right?

Later that day I was talking to my wife about all the great holidays we’ve been on in the past and how we’re probably never going to do anything similar again – and that really hit me hard.

It’s the occasional subtle reminder of just how much you’ve lost – MS is truly a condition which takes and takes.

As an aside, I’m the Vice Chair of a group to do with where I work (CULTURAL ELITE) and the Chair is stepping down – interestingly she’s the person who got this job way back when. Anyway, I just mentioned to her earlier today that I wouldn’t automatically be stepping up to take the Chair’s position when she left.

And she said, “Steve, you’re f**king amazing, why wouldn’t you?” – I swear I nearly broke down at her feet.

I can talk a good game about the Spoon Theory and it’s failings, and that "it's at least part of a culture which encourages people to think about what they can't do instead of the things they can". But I’m just as guilty as anyone of taking the easy way out.

Will I be going to Tai Chi again? Yes. 
Will I position myself by a wall? HELL YES. 
Will I beat myself up for not maintaining the proper form? Probably – but I know I shouldn’t.

And will I step up to lead the CULTURAL ELITE to a brighter tomorrow? Hmmm…

strange moves

Earlier this week I went for my first session of Tai Chi. We do these classes where I work, I get a free ticket and I’ve been hearing about the potential benefits for people with Ms pretty much since I was diagnosed.

So it seemed like a bit of a no-brainer.

I did a course of Pilates a couple of years back – actually it must have been longer as I would probably have written about it on here – and I’ve dipped a toe into the waters of Yoga intermittently over the years.

Also – New Years and all that.

I had a quiet word with the instructor before we began and she said she’d heard that Tai Chi can be beneficial for people with MS (although she’d never knowingly taught anyone with MS before).

Despite being mad as a box of frogs she was lovely and told me to leave any phrases / poses I was uncomfortable with (I explained that my balance is a major issue).

I really enjoyed it – the focus on breathing and posture should be really helpful for me in my quest to avoid my body completely seizing up. It’s early days but I’m going to try my best to stick with it (although I didn’t appreciate her comment that when the weather improves she’d be taking the class outdoors – it’s a little out of my comfort zone as it is, with classes in a closed studio with little natural daylight!).

After the class the tutor made a point of telling me that I’d done well and asked if I’d be going back – I definitely think I will. BTW I didn’t tell the tutor that I worked there until after the class had finished.

A colleague of mine who’d done the class previously warned me that I’d ache in the morning – but I’m pleased to report that I actually seem to be less stiff in the morning than I am usually. I’m quite prepared to concede that this might be Newbie’s Euphoria or something but we’ll have to see over the coming weeks.

The whole form is insanely long and when I tried to demonstrate the brief phrases we’d attempted in class at home, I was delighted to find that I couldn’t remember anything beyond The Opening. Which is nice.

I was really nervous before I went in, so – as is the way these days – I tweeted the fact, which led to the following discussion:

Frank is probably best described as a tightly-coiled spring in person, so this was a genuine surprise to me. He's also the genius behind Frankie Machine, the band I played guitar and keyboards with at Indietracks in 2011.