i'm dancing in the show tonight

Long time readers of IASB will know the reason for the blog's title. Even so I can sometimes forget that it contains a (what I would call) MILD SWEAR.

So I was surprised to have a twitter conversation with a representative of a national MS charity, saying that they wouldn't be able to RT one of my last blogs because as a corporate charity, they need to protect their brand. 

Fair enough - I'm the brand and grammar fascist where I work so I can appreciate where they're coming from. 

Anyway - thanks to the MS Trust (amongst others) who did retweet it, swears and all...!

Back in the days when we were playing in various bands and writing songs, I held the valuable position of recordist. Out of all of us, I'd had the most experience of using 4-Track Studios - I know, it seems so bizarre to think that now I've got a 4-Track recorder, a 16 track studio, and GarageBand ON MY PHONE but still. 

Rather than going out and getting wrecked, we would stay in, think up a band name and write and record songs for them as quickly as possible. It was great experience and really helped me to learn how to get good sounds from some cheap and crappy bog-standard equipment. And working within the limitations was a really good way of working.

Listen to the Shithouse Masters for what I think are the best examples of this stuff. But eventually everything Johnny Domino released was recorded in my home, which is pretty cool.

I'd also record things for friends, and one of those was my old friend Brian. He was the mental drummer in one of our old noisy bands but he also had a taste for the twee-er side of Indiepop - the kind that was typified by bands like The Field Mice and the rest of Bristol's Sarah Records label. 

It wasn't really my bag but I used to record their stuff - and as other members came and went, I ended up assisting with arranging songs and playing a variety of instruments. 

Brian was always really plugged into the international network of fanzines and cassette labels (pre-internet, obviously) and through various friends and contacts, that band - Peru - has had a bit of a second life. Two years ago, a label in Canada got in touch wanting to press a CD of songs so I was given the task of 'remastering' them (the guy pressing up the CDs really spanked them so they sound pretty dire despite all my work - but these files sound just peachy). 

Anyway, Brian put together a new line up of the band which has been playing to audiences ever since. A couple of months ago he got in touch to say that they'd been asked to play a festival in Nottingham and their new bass player had double-booked himself. As I'd recorded and played on most of the songs that are in the set, Brian asked me if I'd be willing to fill in. 

I was chuffed beyond measure to be asked, so next week I'll be taking yet ANOTHER opportunity to show off!

And unlike the intense rehearsal process for my appearance at IndieTracks two years ago, we'll be lucky if we manage one run through before the day...

No bother!

damn fine

When two separate evens occur simultaneously pertaining to the same object in enquiry we must always pay strict attention.
- Dale Cooper 

God, I loved Twin Peaks - in the UK it was broadcast on Tuesday nights and I always remember that every Wednesday we'd all pile on to the college bus saying "did you see it? what did THAT mean? what did THIS line mean??" Excellent music, too.

Happy days - anyway, there is a reason why the above quote popped into my head.

Where we live, we have two neighbours - they're both (fairly young) grandparents and they live alone. A couple of weeks back, in the intense heat, they got together to sunbathe and to indulge in some pretty  high-octane flirting.

Now I'll stop you right there! I have no problem with older people flirting and getting jiggy - it was just that they were so awkward and plus they got HEROICALLY drunk while they were doing it. They could've been the youngest, buffest, most beautiful people in the world but still, there's nothing worse than hearing drunk people of any age trying to cop off with each other.

Anyway, we don't judge. And even though we have a child, we're not like Grandma Moses or anything - we don't mind a bit of noise, it's only natural. But the walls are thin and there have been a couple of occasions when it has gotten ridiculous.

CASE IN POINT: earlier this week - on WEDNESDAY (the international party night), they were playing music ridiculously loud to the early hours. They stopped when we banged on the walls (and no-one likes doing that, do they?) but I'm struggling to stay focused at work as it is (as you can tell by the fact that I'm typing this at 4pm on a Friday...).

But the lack of sleep turned me into a basket case the following day and my legs get incredibly immovable when I've had a stressful night.

Aside from anything else they both know about my health and have seen our daughter - so they know what we're dealing with. With all that, their selfishness was the most upsetting thing about it.

So imagine my surprise when I saw this article in my Twitter feed, about how sleep plays a key role in the production and repair of Myelin.

"Disturbed sleep may aggravate perhaps the symptoms of [Multiple Sclerosis], in a vicious cycle"

Now it's not rocket science that rest and recuperation can play a part in maintaining our health and it's a particular type of sleep that seems to be the most beneficial but still, it's interesting so I thought I would share with you.

holiday epiphany

Seven years ago last month, me and Mrs. D got married in Venice - not to be flash or anything, it was just where we went on our first holiday together as a couple, and I think we were even talking about it back then (which was about two months after we started seeing each other).

if we look sickeningly happy, that's because we were!

Even though we got married a year after my diagnosis, we still decided to do it in the middle of the day at the hottest time of the year. And as you can tell from the picture above (aside from the fact that I'd clearly EATEN ALL THE PIES), there was a fair bit of walking involved, around a city which - although amazingly beautiful - is perhaps not the most accessible.

Could we do it now? I don't know - it would certainly take a lot more planning.

Some friends have asked us recently if we'd recommend Venice as a place for them to take their young (under 1 yr old) son. And our initial response was to say no way, but then we realised that we have an additional issue to contend with.

Are we creating problems unnecessarily? It's hard to say, and all pwMS probably do this.

But does it stop us being brave? And should it?

Last week we were on holiday with my family and my brother and his kids - which we did at the same time last year after my relapse, when the idea of holidaying solo seemed ridiculous.

We went on holiday with my in-laws earlier this year which was great. And it's really useful for us to have an extra pair of hands around, but I don't want to think that we'll never go on holiday on our own again.

So the last week we had a really cool time in a lovely part of Wales, Aberporth. The weather was great, and it was really mellow (even with three family members under the age of 8).

Highlights:

• El Salsa - As we arrived in Aberporth we saw a sign advertising Mexican take away so we did a little bit of digging around and discovered that it was a little pop-up eating cart, on Tuesdays only and was dirt cheap. So one Tuesday, me and Mrs D ended up eating delicious freshly-made Mexican food whilst sat on a bench overlooking the Welsh coast. It was gloriously surreal.
  
  
• Epiphany on the shore. This isn't rocket science by any stretch of the imagination, and is probably something you have noticed many years before. But I was standing with my feet in the sea (after letting my feet get acclimatised to the change in temperature, obviously) and I was really aware that the sand was being sucked out from under me. Obviously this is THE WAY THAT IT GOES - it's not some brilliant insight that no-one's ever had before - but it was really obvious to me last week. That the seas move the sand out to sea and back to the land in a constant motion. The earth was being moved out from under my feet by powerful waves.
  
  If I had been more depressed, this would have been a reminder of my diagnosis and of my increased unsteadiness. But now it was a cosmic reminder of the inter-connectedness of everything and an awareness of the fact that I was standing with my wife - who I love very much and who puts up with A LOT - and we were both holding hands with our daughter.

All things considered, life is pretty good and it might not always be so.

We should all enjoy it while we can - and take it from an official miserable bastard, we can all be as happy as we possibly can be in our present circumstances if we let ourselves.

Stevedomino would like to make it clear that he was not partaking in any controlled substances when he came up with his blindingly-obvious hippy-dippy bullshit non-insights. Just so you sarcastic buggers know!

why do we do it to ourselves?

The original title for this blog post was going to be:

Fuck, fuck, fuckety-fuck

So the last couple of weeks has seen me applying for a job for the first time in six years. No real reason, I'm fairly happy where I am currently, just something came up so I thought, what the hey?

Which means that the last couple of weeks I've been reminded what a MASSIVE PAIN IN THE ARSE it is applying for jobs.

First up, there's the application form. If you're like me, you'll agonise over every phrase, even before you get to choosing your referees. And don't get me started on the covering letter / email.

Maybe you get an interview, which is where the real fun starts. Especially if you have to prepare some kind of bloody task or presentation.

So yeah, that's where I've been the last fortnight. And because I'm talking about the arts, there's a ridiculously short turnaround.

For example, last week I was told I had an interview, which I had on Friday - including a presentation which I had to prepare.

No big deal but - to be honest - I was pretty dim as far as managing my energy was concerned in the run up. I had a late night at work on Wednesday, after which I needed to get my shit in order.

Which is why on Thursday I was convinced that I was having a relapse - I lost control of my legs and couldn't control my hands with any kind of precision.

This turned out to be very similar to the mini-relapse I had a few months back. After a good night's sleep, and a fairly low-stress and lazy morning, I went along to my interview.

In a new suit, if I say so myself, I looked the nazz.

With everything else that was going on, I didn't have as much time to prepare as I would've liked - which is why I'm unsurprised (but obviously disappointed) to report that I got an email over the weekend saying that the panel won't be taking my application further.

Why am I sharing this with you?

Job interviews are a MASSIVE PAIN IN THE ARSE anyway, regardless of our particular health issues. And I didn't honestly think I'd got the job - rerunning the interview in my internal insomniac cinema, there were too many, "ooh, I should've said THAT"s.

Don't get me wrong, there were some answers I was really pleased with. But still.

I dunno - I'm just kind of wondering where I go to next. Will I ever have another successful job interview?

Whatever. I'm not in any great rush to work somewhere else, and it's a luxury to be applying for jobs when you HAVE a job. And I DID get the interview.

But I'm still pretty pissed off that I put my family through the last few weeks - not only the application and preparing the presentation, but the touch-and-go of whether I was going to get to the interview.

In conclusion:
MASSIVE PAIN IN THE ARSE

Bah.

a word to the wise

I started writing this post yesterday when I was in the eye of a Fatigue Storm. It was shaping up to be super-long and super-depressing - today is quite a bit more hopeful! So stick with it.

Let's Go!

It has been seasonably warm over the last few weeks - it says a lot for the English Psyche that we feel the need to comment when our summer is *heaven forfend* SUNNY.

The other week, my mate Simon started the Derby Race For Life in memory of his late wife Annabel - the race started round the corner from where we live, so we went along. We didn't manage to hook up with Simon but had a nice time on the park watching people running 5k in blazing heat.

The trouble started when we tried to get home - the heat had done a number on my head, so I could hardly move my legs. I barely made it home.

This year has been the first time I've really been aware of how the heat can affect me - yeah, I've noticed the energy drain before now - but this year, it's been almost like as soon as my head gets in the sun, my brain goes into a slump.

So when this post appeared on StumblingInFlats at the height of the heat, it was all too relevant to me.

Case in point - this last weekend, we were in Bristol for Gromit Unleashed exhibition (Evie loves the Wallace and Gromit films) so we stayed for a night in an apartment and tried to walk around seeing as many of the Gromits as possible.

Y'know, like any normal young-ish family.

Obviously MS had other ideas. Basically the heat and a long drive conspired to make it feel like I was walking through thick sludge. I'm assuming that you know how it is!

But obviously this conspired to put a dampener on the weekend for us all - actually, I don't know if Evie noticed but me and Mrs.D certainly did. It's hard for her to see me struggling, and it always makes me have all kinds of helpful thoughts.

"Is this the start of a slow decline? Am I going to need more assistance in the future? Will our lives consist of a constant narrowing of our horizons? Would my girls be better off without me?" - y'know, that kind of thing.

It carried over into my return to work this week - each day I was completely beat when I got home, struggling up the stairs and making it onto the sofa, barely able to hold a conversation.

ANYWAY - for some reason, when I was bathing Evie last night, I remembered something that somebody on Twitter had talked about - how her MS symptoms seemed to be exacerbated by a histamine intolerance.

Now - I've had Hay Fever since I was a child. But I have many, many HAPPY memories of Summers spent with my brother (who always had Hay Fever much worse than me), listening to records in the Dining Room at my parents house - the stereo was in there, and the room never got ANY Sunlight.

These really were golden days - eating frozen fruit drink cartons and listening to the key musical texts of my upbringing - quick thanks and roll call for De La Soul, Pixies, Dinosaur Jr, Throwing Muses, Sonic Youth and The Stupids.

Musical digressions aside, I still get a little bit of Hay Fever, so I've recently been taking antihistamines.

When that Twitter conversation popped into my head (and after I'd put Evie to bed), I went to Google and just look at what popped up:

Now I'm not dumb enough to diagnose by Google but that article makes for interesting reading!

Am I going to take it with a pinch of salt? YES - especially as the same search throws up results which seem to promote the use of antihistamines as an MS treatment.

Did I take any hay fever treatments this morning? NO

Do I feel more physically and mentally able today? YES

Am I going to talk to my MS Nurses about this? HELL YES 

Today's lesson:
With MS we're playing with a queered deck from the start, so I guess I should've known to look into things a bit more carefully before I started taking any additional medication.

And I know there might not be a link.

But I DO feel better today.

So let's all be careful out there.

And with that I'll leave you with the full Peruvian Vacation album by The Stupids (it's only 20 minutes long) - sometimes the internet really does deliver in spades, doesn't it?

Enjoy - and pass me a Capri Sun.

sixteen and time to pay off

A relatively quick post because yesterday I had another appointment at the Urologist.

Which meant that the weekend of my 40th birthday (which was lovely, thanks), I had to fill in another VOIDING CHART. 

It was no biggie really - the nurse told me previously that it was more as a guide to frequency, rather than setting a gold standard for accuracy. 

Anyway, since our last meeting I've been trying to go for a little longer and to ignore my pesky misfiring nerves - and the nurse was pleased with my progress. 

The following conversation is pretty much verbatim:

Nurse - You've basically got three options now. One: you can keep doing what you're doing now, trying to go a little bit longer when the initial urge hits, in order to try and make the volumes increase when you do 'go'. 

Stevedomino - OK. So that's the 'less easy' option...

Nurse - Two: there are drugs which you can take that can support the bladder retraining process. I know you're taking Oxybutynin...

Stevedomino - Actually I stopped taking that a few months ago. One day I just forgot and I decided to keep going. Anyway, with my Rebif and Gabapentin, I tend to think that I take enough drugs. So if I can avoid taking MORE that might be best. 

Nurse - OK, well that's fine. There is a third option. Have you ever heard of a TENS machine?

Stevedomino  - Oh yeah, my wife had one for use during the early stages of labour. 

(As an aside, I remember thinking at the time that a machine which gave me short bursts of electricity was some kind of IDEA OF HELL - I have enough trouble with pins and needles and spasms. But anyway...)

Nurse - So you know what they are and this works in just the same way. You have to use it for so many minutes a day, ideally for a period each day.  And in collaboration with all the other things you're doing, it can have a positive effect on bladder control...

Stevedomino - Well, that sounds pretty interesting...

Nurse - However, you can't wear the machine in the same way your wife did. Because it needs to affect you bladder, the electrical current is transmitted via a large probe which you insert into your back passage...

[epically-long pause] 

Stevedomino - Oh... So tell me about the first option again?

I must say it gave my wife quite a laugh when I told her about this option. And she has already said that she might give the nurse a call the next time we have a falling-out:

Actually, Steve has been thinking and he would like to try the anal probe... no, he can't get to the phone right now... no, just send it for my attention...

I hope my rampant oversharing has spread a little sunshine in your day too!

Also, the nurse was a firm believer in the theory I was talking about last time...

don't want to be one of THOSE moaning MS bloggers but...

... HOLY SHITBALLS, I'M FECKING EXHAUSTED.

(OK, that's out of my system)

It's the last few days of my 30s. I'm not TOO bothered about turning 40 - my wife would be only too happy to say that I'm almost perpetually grumpy so I'm already well into old fart territory.

We all need a role model

My 30s have been pretty tumultuous - like most people, I guess:

• in my 30th year I ended a relationship (which involved selling a house and moving back into my parents' house. Luckily they're amazing people so this was actually a great time for me! I just wish I'd saved more money in this period. Anyway...)
• I also started a relationship with the woman who would eventually become my wife
• I was diagnosed with MS
• I was made redundant from my job - a year after diagnosis (unconnected) and two months before I got married. I never stopped working, doing some freelance *stuff* before getting my current role as a fully paid-up member of the local CULTURAL ELITE.
• Bought another house
• Became a father

There have been other milestones but these are the key headlines!

---

So remember here when I was being a little snarky about Merck Serono and their MySupport swanky magazine/app? Well, there's a (small) portion of Humble Pie coming up.

The other night I'd just done my Rebif injection when the machine just shut down. Kaput. No light's on, no-one home.

I called the MySupport line and left a message (for some reason I was very late doing my injection - probably some wild party or gallery opening... *ahem*). The next day they called me up, and yesterday I got my replacement machine.

Nice one.

ALSO - Flicking through my latest MySupport magazine, I came across an article about MS-related Cognitive issues.

It was full of all kinds of hints and tips (writing lists? CHECK. Putting keys in a designated place? Hmm... I'm working on it) but the bit that really struck was a pull-out box which said:

Knowing that we might develop memory problems can sometimes make us more aware of every little lapse, but try not to worry - we all forget things sometimes! 

Not rocket science, but it really got me thinking - which came first, the Cog-Fog or the expectation that you will suffer from Cog-Fog?

Similarly, which was first, my bladder issues, or reading about the link between MS and bladder issues?

I'm not disputing that there's a link - but by focusing my MIND on the potential issues, have I almost created the problem before it was due?

By reading all these MS blogs and going, "wow I've got THAT symptom, that makes me feel less like a freak.... but I haven't got THAT symptom... yet... which concerns me", are we convincing ourselves of the problems which may or may not be "in the post" before we necessarily need to?

I'd be interested to hear your thoughts - as I said, I'm not disputing that there's a link between MS and *SYMPTOM Y*.

And as usual I don't really know where I going with this. At the very least it's some kind of weird Audience Development project - "don't read this, it's bad for your health" or something.

Well played, Merck Serono - you've won this time. But I'm still watching you!