Friday, 23 September 2016

wrapped in plastic

Right at the start of my MS 'journey' (ugh) the only person we knew that had any connection with the condition was a girl Me and Mrs D both knew at the theatre where we worked. Her mum had Primary Progressive, was severely disabled and sadly eventually died. So that was our introduction to MS and our overriding image when I was diagnosed. 

As I've mentioned before, the theatre is the only past job where we still have any links with our ex-colleagues (and obviously I also met Mrs D there). So we've stayed in touch with our friend over the years. 

In February, she was diagnosed with Clinically Isolated Syndrome and an MRI showed lesions on her spine. Now CIS isn't necessarily a first sign of MS but given her family history she wasn't taking any chances. 

Which is probably why she has wholeheartedly gone for the OMS Programme. Our friend is feeling good and has been sharing photos of her food on social media for a while. Earlier this week she shared a link to the OMS website on Facebook and, coupled with the fact that I've been feeling mightily worn out recently, our interest has been piqued. 

From the website:
"Overcoming Multiple Sclerosis promotes a program of diet and lifestyle management that has been shown to improve the health and lives of people with Multiple Sclerosis. Professor George Jelinek, who was diagnosed with MS in 1999, developed the rigorously researched OMS Recovery Program more than 15 years ago."
Now I've always been very cynical about this sort of thing. It's probably been a kind of denial to say, "well, I've been dealt this shitty hand so I'm going to eat whatever I damn well please". And, y'know, we all need a bit of scientific proof and validity.

But it has always been the case that we live in a house which is predominately Vegetarian - and while I don't eat as much meat as I might do (or as much as my mum might like) neither am I as careful with my diet as I could be. 

So I'm dipping my toes into a Pesca-Vegan diet. Of all things.

The whole thing is based around diet, exercise, stress management / meditation, vitamin D and omega-3 supplementation, and medication when required - nothing too way out there, right?

I'm not going 100% straight off the bat - the oils and fats which are meant to be avoided will take a lot of research. But even cutting out meat, dairy, crisps and biscuits feels pretty hardcore at this point.

Earlier this week I had probably my last ever cheese and pickle sandwich (pictured).
Luckily it was as bland and anaemic as this picture implies. And the plastic wrapper makes it look like something out of Twin Peaks.

I feel that I've been shamed into getting a bit real-er than I have done before. But I'm looking forward to the day when I stop going "awwwww..." in a mardy voice whenever I realise that I can't eat something any more. 

The thing which has really helped is the fact that the aforementioned Mrs D is being super-supportive. She could have easily said I was on my own (she LOVES cheese and crisps more than she loves me) but she has bought me all kinds of groovy (and weird) stuff to try to help me along my way. 

So I need to break it to my brother and my friend Mike that the days of beer and burgers are at an end.  God alone knows how my mum's going to take it...

Although it is weird that a few months back when I started Tecfidera I was being told to eat as much fatty stuff as I could.

Make yr minds up, people!

Monday, 12 September 2016

inspiring and offending in equal measure

Let's not do the whole "not blogged in ages, too much life getting in the way, blah blah". Let's just say that we're both at fault and move on, OK?

Last month was our 10th wedding anniversary so we packed off The Child and went down to That London for the night and took in a musical. Now, I loves me a musical but even I have to admit the highlight was John "Bergerac / DCI Barnaby" Nettles, who was sitting behind us, helping my wife look for her glasses.

(Ironically he was no bloody use. But then her glasses were back in the hotel...)

The next day involved the National Gallery and the British Library, where there was a little punk rock exhibition, the most punk rock part of which was this fantastic bit of righteous graffiti by Viv Albertine, ex of The Slits. 

Never mind that, there were loads of signs up saying that phones and  photos weren't allowed. But did that stop me? TAKE THAT, THE MAN!

We decided not to do the Underground this time. More than anything I get a bit anxious down there, it's not the most accessible thing in the world plus it was the height of summer. So we got taxis - both yr classic hackney and a couple of Ubers. I know they can be a bit controversial but being able to see when your (prepaid) taxi is going to arrive at the exact spot where you are standing is undeniably pretty bloody cool.

The other fantastic bit of travelling was going First Class on the train. Maybe you do this sort of thing regularly but I've always been strictly Prole. The only reason we did it was because a friend of ours works for a train company and got us a couple of free passes. Nice work if you can get it but we probably wouldn't have been so free and easy with the taxis otherwise. 

Last week we had a week away which involved driving all the way down to the South coast - 244 miles each way, the furthest distance I've ever driven. 

Both of these incidents are a reminder of my New Year's not-resolution, to try to give up less and try to go out of my comfort zone. I've forgotten about that quite a bit but I do need to try to maintain that frame of mind. You're a long time dead.

Friday, 5 August 2016

have guitar, will travel

or "rocking (gently) in the free world"

the author, looking well moody
So a little over a week ago we (Frankie Machine) played at IndieTracks. And it was great despite me getting ridiculously nervous (as I always have done) beforehand.

I tried to calm my nerves with a visit to the ridiculously well-stocked Real Ale bar. My first choice was for a B-52s-inspired ale, but it was pointed out to me that at 5.2% (in the middle of the day) it probably wasn't the best choice. So like my band-mates I plumped  for a half of Roadrunner. It was a good choice but it didn't help all that much.

I saw a few people who I've not seen for a LONG time, then our travelling army of supporters (wives, partners, kids) turned up.

Everyone at the festival was super-cool, helping me to get over the train tracks and bridges and sorting me out with a chair for our set. Really lovely.

My Mother-in-Law has asked me beforehand how long we would be playing - I told her "there and back", because we got on a train, went to a different part of Midland Railway, and came back again. All told, it took seven songs, including between-song banter and a final song when the train had pulled in.

(because of the position Mrs. and Ms. D took up, I don't appear in any of our videos and photos, so I'm forever indebted to my old friend Brian for taking the picture at the top of this post which proves that I WAS THERE - I'm not glum, that's my concentration face!)

In many ways it was the perfect gig - once the train started moving, the audience (which was surprisingly large and not just our family members) couldn't leave. A dream gig!

IndieTracks is a lovely festival - just a nice vibe. Truth be told, the music is not all to to my taste but everyone seems to be lovely. Rob (the titular Frankie) has been to the DownLoad metal festival and he says that there are many similarities between the two - the audiences are made up of the interesting, quirky and intelligent people who were ridiculed at school for being different and for the duration of the festival they're surrounded by people who understand them and share the same bond - THEIR PEOPLE.

Apparently IndieTracks rules state that acts who play one of the programmed stages (Indoor, Outdoor, Church [where we played last time] and Train) cannot play the festival again for three years.

So thanks once more to IndieTracks, for making us all feel like stars - and not only because of our snazzy performers' wristbands!


Thursday, 28 July 2016

just make it (the moaning) stop

Work nonsense is ongoing. 

Anyway, it's too depressing (and frankly embarrassing) to go into, so let's get POSITIVE
  • One positive outcome of the Occupational Health visit was the assessor's recommendation that I look into doing regular Meditation. As is the modern way, I downloaded an app for my phone, and I'm not going to pretend that I use it every single day but I know that when I do I find it incredibly helpful - just to stop, switch my brain off and do nothing for a few minutes.
  • Little Ms. Domino has finished her first year at school and had an end-of-year report which to be frank made me sob. She's such a smart cookie and we're so proud. No doubt she can be a massive pain in the arse but we're so lucky in so many ways (for instance, she can also be super-considerate about Daddy's walking). Love her. 
  • Five years after we last played there, Frankie Machine has been asked back to play at the Indietracks Festival this coming weekend. As before we've been rehearsing, and being a bit of a lapsed musician has been challenging (am I a Relapsing and Remitting musician?) but I'm having a blast. My callouses are coming back nicely too (see photo below for evidence). I'm pushing for us to have more regular rehearsals in the future so it will give me some impetus to 'keep my hand in'. But I really am loving it. Although this year we are playing on a (moving) train - you'll be pleased to know that I have requested a chair.
they might look GROSS but those manky bits on my fingertips are a GOOD THING
  • Next month is mine and Mrs D's TENTH Wedding Anniversary. What a long strange trip it has been. As I've mentioned before, we got married in Venice at the height of Summer. We have always intended to go back for our 10th anniversary but we've decided to look at going when the temperature is less oppressive - it's frustrating (to admit defeat to MS) but we'd rather play safe than spend a load of money on a potentially depressing couple of days with me sweating and limping (best case scenario!!) through the crowds. The plan now is to go back at some time next Spring.
  • We went to see The BFG movie at the weekend. It was a good film, a bit sickly-sweet in places (Spielberg) but some good funny bits too. My favourite bit of the film, however, was before the main feature. Our local cinema has a very funky ad ident which is obviously a 21st century version of the classic Pearl & Dean ad - loads of Latin percussion and Jazz Flute, it's fabulous. Anyway this started and Mrs D began to intensively mime playing the flute - apparently this is something she does whenever she goes to this cinema with Little Ms D, who normally takes on the role of percussion. For some reason she wouldn't do it on this occasion so we just clicked our fingers (strictly on 2 and 4) and laughed our asses off at Mum, who was going TO TOWN. This was absolutely my favourite part of the whole weekend - I really love my family.

Tuesday, 31 May 2016

show and tell

One of the most “challenging” things about getting Little Miss Domino out of the door of a morning is the fact that, just as she gets ready, she invariably says that she needs to find something for “show and tell”.

(me neither)

I don’t know if this is specifically an American thing but I’ve become aware that I’ve been doing this a bit at work - I seem to be going through a period when, even though I consider myself pretty-much out of that particular closet, more and more people have been coming up to me, doing the classic head-cock-thing and asking, “are you ok?”

I know, the bastards.

This isn't just people at work however. People who I see socially - parents of other kids in particular - have been asking the same question. Rightly or wrongly, I’ve been tending to jump straight in with:

“[gesturing to my sticks] Oh these? I just need to use them to get about. I’ve got Multiple Sclerosis so I’m disabled… No I’m OK… It is what it is….”

I don’t know if this is a good way to go about my business, but I’m not trying to get up in anyone’s grill (or anything). 

However it has to be said there is something kind-of militant about rocking the TWO STICK look. But after taking this stance for a while, it just gets a bit tiring.

One day arriving at work recently I was feeling pretty weary when I happened to walk into two circus / acrobatics performers (as you do - seriously, the things these people can do are frankly astonishing. And not a little unnatural).

Anyway, despite the fact one or both sticks are in use every day, they had obviously never clocked them in use, so they asked me “what’s happened?”

It was early in the day, they are lovely (FREAKS but lovely) and I couldn’t bear to get into it, so I ended up mumbling something so inconsequential that I have no memory of it.

So I’m now being hyper-aware of when I choose to “double-stick” - obviously I won’t let myself come a cropper physically for the sake of making anyone feel uncomfortable.

As the more obvious affects of my MS seem to be getting more and more noticeable, I might need to come up with a new answering technique which:
(a) Is honest about the situation
(b) Doesn't make the asker feel like a schmoe

Friday, 29 April 2016

what was that? aftershock

So the basic rule for survival in 2016 seems to be to have never done ANYTHING awesome EVER.

Last Thursday evening I was driving to a work thing after nipping home briefly. I turned on Front Row and realised with horror that people were talking about Prince in the past tense.

When I got to work, I was touched that everyone I spoke to expressed concern for how I was and surprise that I'd made it in!

As a 13yr old growing up in an ex-mining town in the Midlands, flamboyance was something to be avoided. The other boys in my year were all about drinking, smoking, sport, copping off with girls (or at the very least talking about it). Music didn't play a huge part in their lives but it already did for me, which even gave me an 'in' to talking to the quieter more studious girls (nothing ever happened, but still).

There was always something otherworldly about him, aside from his in-your-face “sexualness”. So when I first listened to him it was always in secret. The first album I got was Parade and I was mortified to see that he was showing a fair amount of flesh on the cover. He was incredibly private, obviously shy, androgynous, yet seemingly sexually voracious. It was a weird mix.

I've realised over the past week that, between them, Prince and Morrissey were, for me, kind of the twin guiding lights, showing me that there was a different way to act as a man - similar to the way that Bowie was for people in the 70s. It was ok to be different - intelligent, softly spoken, well-read, funny.

I'm not going to pretend that I bought everything he did. My window for album purchases is Around the World In A Day to The Black Album, but God knows whatever he did and the way he did it was always interesting.

The only time I saw him live was when he did around thirty nights at the O2 in 2007. When he popped up out of the middle of the stage and said, "Dearly beloved..." I'm not ashamed to say that I squealed.

It was pretty much a perfect Prince gig - a fair smattering of the hits and a substantial bit of aimless funk jamming. It's like if you went to see Bob Dylan and he didn't mangle his classics beyond recognition you'd feel shortchanged! But the epic version of Purple Rain (what else?) will live long in my memory.

In the week since his death, there have been a lot of heartfelt remembrances. But I was also incensed by this story on the BBC News site - Five strange stories about mysterious US musician. This was the DAY AFTER his death.

Like Bowie before him, Prince was an artist who liked to keep some things private but who knew how to add to his mystique by sharing tantalising titbits with the press. Were any of them true? I could genuinely give a shit. I like my celebrities to be mysterious, untouchable and little bit eccentric and OTHER.


[POP QUIZ: as an aside, can anyone think of a difference between Prince and Bowie which might mean that the way they're talked about in memoriam is in itself somewhat different? anyone? hmmm...]

The worlds of celebrity and music are getting duller by the second!

RIP PRN

Thursday, 21 April 2016

one step forward, two steps back

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

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

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

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

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

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

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

Grump.

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