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!

back to the lake

(not really but this was the most relevant song title on myPod for the name of this blog - by the mighty Guided By Voices, obviously)

So a couple of weeks back we went away for a family holiday and we went to the Cotswolds - readers with long memories will recall that the Cotswolds was the place where I started to feel the beginnings of RELAPSE2012.

I must admit that I felt some trepidation but this time we were going with some support - Mrs Domino's parents and wider family. And it was great.

The weather was pretty, erm, British, but it didn't keep us indoors and despite that we spent a lovely week in a lovely part of the UK, walking about and looking at lots of lovely things. It was lovely.

We were close to Broadway, a place I mentioned before - if anything, there are EVEN MORE disabled parking spaces than I remember, and there are at least TWO Gold-medal-winning public toilets there (I must have missed the awards ceremony), plus dropped-kerbs a-plenty.

It was as great as I remember, plus I'm slightly more mobile than I was when I was last there. I even managed to walk up Broadway Tower this time.

Anyway, it was a great break and good to have others around to take the pressure of me and Mrs D. Travelling down was good this time too (there were MANY toilet stops last year...). ONWARDS AND UPWARDS, eh?

The return to work has been tiring, not helped by having a breakfast meeting on the second day. I've spoken before about my hatred of meetings but this is a whole new FRESH HELL. It was quite pleasing to see that every one of my colleagues who was in attendance was every bit as knackered as me for the rest of the day.

As such, I've not been managing to walk into work as regularly as I would've liked but I really need to stop beating myself up about it. Funnily enough, it's a lot easier to do it when the weather is good (and similarly easier to just jump in the car when it's p*ssing it down).

Who would've thunk it?

I've started taking Vitamin D - is it making any difference? Who knows! But I'll keep doing it in the hope that it helps.

Fellow blogger and regular commenter Swisslet wrote a really interesting thing the other day about MS and weight-loss. This is something that has happened to me recently - as I commented to that post, I was a bit pudgy growing up but have recently gone down a trouser size for the first time in ages. I'm also the lightest I've been since school, all whilst eating like a fiend.

A quick Google to see if this was another, less-documented side-effect of MS threw up...well, not much, other than this thread on an MS Society discussion forum - and this comment in particular:

My husband was losing weight and had no appetite so our physio suggested we see our GP and ask for blood tests to be done. The result was he has an underactive thyroid, which usually causes weight gain, but in some cases causes weight loss. Then our GP told us it is quite common for people with MS to have trouble with the thyroid which is another immune system problem, which of course no one tells you about.

Interesting, no?

the magic number

Just a quick post while I try to eat my lunch – apologies for any spelling mistakes! (more than usual anyway).

So today I called my GP for the results of my Vitamin D test (which I had over a month ago).

She started off by saying that neither her or a colleague could find any information about Vitamin D and its effect/impact on MS.

To which I said that it’s spoken about on the MS Society and MS Trust websites for a start.

So eventually she said that the average result for healthy people is between 50 and 100 (sorry for the vague numbers, she probably told me the unit of measurement but I was quietly fuming by this point).

Anyway my score is 38 – a little over a third of what it should be (i guess) but not low enough to be deemed 'insufficient' (which is 25 and under).

She said that she wouldn’t have a problem prescribing some supplements but that I could go and talk to a chemist to get a steer.

Thanks for that (another slow hand clap,please).

So my question to you is:

• Do you take Vitamin D supplements?
• If so, what dosage do you take?
• How did you come to that decision? Finger-in-the-air guess or consultation with a GP / MS Nurse?
• Should I just go and live in Italy instead?

I know that I’ve had some comments about this before (which seem to back up the European Food Safety Authority view that 4000 can be taken safely) but all help / guidance gratefully received.

the horrible truth

Feel (and hear) my pain...
In my defence, I had to submit three news stories in advance to discuss. When I arrived at the station, I was kept waiting in reception until 11.14 (I was due on at 11.15) - when I was dragged up to the studio and plonked into a chair behind a microphone.

Quick hello to the presenter (I've been on with her before) and we were off.

The three stories I decided to talk about were something to do with the local theatre, then something about the new Culture Secretary (as I said before, Derby's Cultural Elite), before we talked about the thing I really wanted to get onto - MS Awareness Week.

Obviously, she decided to flip the order and go straight for the jugular, which is why - IF YOU CAN BEAR IT - you'll actually be able to hear me flapping. In the break in our chat she did say that she would've told me what she was going to do if I'd been brought into the studio earlier.

Man, do I really use the word "STUFF" that much? And me a fricking English Graduate.

If you listen carefully, you can actually hear me physically groping for words. I think I even managed to avoid describing what MS actually is - informative. And I seemed to get really stuck on the word AWARENESS.

Anyway, it makes me want to die of embarrassment and I forgot to mention so many things but people tell me I did OK.

By the time I talked about the other stories it was much more chatty - like I'd warmed up. Which is what I would have ideally done if I'd left the MS story to last.

MsCrankyPants - if you're reading this, I'm guessing that you'll also have a Vanessa Williams power-ballad in your head right now - "Just when I thought my chance had passed, you go and save MS to last"

Like I said, Cultural ELITE.

In other news, I called my local GP surgery to find out the results of my Vitamin D test - they said there was a note that I needed to either see my doctor or make an appointment to have a phone conversation with her. So I'm calling her Wednesday lunchtime - should be interesting.