still here

Thanks for everyone who left a comment on my last blog post - much appreciated.

The Short-Stuff first - we had a great day out as a family for Miss Domino's 2nd birthday - and a great (but UTTERLY EXHAUSTING) weekend of birthday celebrations.

But the thing that kind-of prompted that post was obviously my appraisal. Like I said, no-one likes that sort of thing, even without our own particular special additional requirements.

The year under dicussion began with me having a really bad relapse and being out of the office for a total of 6 weeks - admittedly trying to do bits of work for much of that time (against the advice of the MS Nurse Team, silly boy). Which is why I was so worried.

Anyway - the long-and-short of it is that I'm very lucky to work in such a supportive environment. My Boss is uniformly awkward and uncomfortable talking about disability (not just my own) - ever since I disclosed my condition on my second day working here - but he's getting better.

Since my last relapse, I've been allowed quite a lot of time out of work to attend Physio / CBT / Urologist sessions. Also since then we've put measures in place which will support me if I have a relapse and which enable me to stay connected - great, but potentially mean I will never leave work, but swings-and-roundabouts.

I know that not everyone is so lucky - not to excuse the bad-bosses, but I think some of this might be because I work in the Arts. Think about it:

• a bit of a cliché, but people in the arts are more naturally sensitive and empathetic
• working in the arts means that (more often than not) you're funded by Public Money - so there are more strings attached and you're under more scrutiny - it's not just some big Private Enterprise that can do what it damn well pleases

There are other aspects, too:

• we're a small team here and we each have our own specialisms - meaning there are things that I can do which other people can't
• I'm pretty good at my job
  (in my defence, colleagues have told me - more than once - that I need more confidence in myself. So that is me being confident - Raah! Watch Out!)

So yes  - come and work in the arts if you want to be treated right - the hours and pay are uniformly shit, there are few benefits and you have NO JOB SECURITY, but still...

full disclosure

The title for this post comes from a phrase I've found myself using increasingly at work.

One recent incident was a disabled audience member for an outdoor event commenting on access; the other was an artist with a chronic illness who is exhibiting where I work.

On both occasions, I've used the phrase in emails:

FULL DISCLOSURE - I'm disabled / I have a chronic illness

The reason for my relentless COMING OUT?

In both instances, it's to show that I have SOME AWARENESS of their particular issues and conditions; plus I appreciate that they might feel uncomfortable stating their issues to a NORMAL so it's easier to know I'm one of them, right?

But in both instances I've felt the need to add:

(I have Multiple Sclerosis)

a bit apologetically, especially with the coy little brackets.

It got me thinking: Why do I do this?

I think part of it is that I'm not THAT (obviously) ill (most of the time) - if my statement stood unqualified and we met, they might feel a bit... I dunno, miffed.

But I do have MS. And it can be no picnic, as we know.

I try to put a brave face on things and be all gung-ho about (for example) bladder retraining and using a walking stick. But I'm human and sometimes the steps I have to go through can't help but shave off a little bit off my dignity.

So I shouldn't really make out it's no big deal - this is a condition which has no cure and no clear path of progression. And I accept that.

But earlier this week I came out to a colleague. And when she said that she was sorry, my other standard line popped out:

"It is what it is"

Which is true but a little bit flippant.

But what are the other options?

Recount the Long Dark Nights of The Soul? The days staring into the abyss, trying to second-guess the particular path my MS is going to take, and the effect it will have on my life and those around me?

What good does that do?

I don't know where I'm going with this post but the whole thing was prompted by a day where numerous people at work FORGOT about my health issues and made RIDICULOUS demands on me - I know, how dare they.

And yes, I can be something of a solipsist. AND I know some people are not so lucky to have such an 'invisible' disability.

But it made me feel like a heel to have to let people down, and I thought I should maybe get a T-Shirt made up:

patented t-shirt design by a man with too much time on his hands... other colours will be available

Maybe the waffling you see is because I have my ANNUAL WORKS APPRAISAL coming up after lunch - no matter how good you are at your job, those three words can't fail to fill you with dread, right? Especially when the last 12 months have also contained RELAPSE12: THE QUICKENING.

No matter - I've got tomorrow off work for my daughter's second (SECOND!!) birthday - seeing as I was up to my neck in relapse and unable to do anything with her last year we're going out for the day.

Surely work can't wind me up enough to ruin that day, can they...???

well, well, i am bad

(not really)

But 'Leonard' by Sharon Van Etten was soundtracking writing this post - in much the same way that she soundtracked my relapse last year - memories...!

Anyway, that title is preferable to "the waiting is the hardest part" which sprang immediately to mind - and I can't hear Tom Petty anymore without having flashbacks to the 4 hour (FOUR HOUR!!!) documentary that i watched a few months back.

I'm a sucker for a music documentary but seriously - "exhaustive" doesn't even come close.

So on Saturday i went to my local walk-in centre to get some blood taken which will get sent to get my Vitamin D levels - this was on one of the sunniest days we've had in ages, the irony of which was not lost on me as i waited for about an hour while my wife and child played at a nearby park.

Anyhoo, we'll see what the tests say.

I find myself in a weird position of hoping that the levels are low so that I can actually do something positive about them - y'know, like I want to be ill enough to take a massive supplement.

--

I've been somewhat distracted while writing this post by the news that Margaret Thatcher has died, aged 87.

She was the Conservative Prime Minister for 11 years, and throughout her term continuously demonised the weak, the poor, the ill and the disabled. She also tried her damnedest to dismantle the Welfare State in this country, with policies that were vile, pernicious and downright evil.

It's ironic that she has died on the same day that sweeping changes have been made to the way that Disability Benefits are paid.

She would have been 'proud' of what the current government is trying to do.

And I hope it's warm enough for her where she's (undoubtedly) going.

quickie

So Gabapentin is great for my leg spasms - and it also means I sleep like a log (and snore like a warthog - sorry Mrs D!).

It beats spending another night at the Disco(Leg)thèque anyway.

I feel a bit woozy in the morning but I like to think that adds to my charming muddle-headed slacker persona at work. Let's see how it works out on days when I actually have to do some real work!

This morning I went to the doctors so I've got a scrip for getting my Vitamin D levels checked out - there has been a lot of talk in various MS-related circles about this recently. - so will be checking this out soon.

A friend of mine who has Chronic Fatigue Syndrome had this done recently and found that her levels were something like 15% of what they should have been - she says that the supplement she's been taking since then has improved her tiredness, muscle and joint pain. So it's got to be worth a go.

disco (leg) inferno and a question

Long-time visitors to this little blog may remember that this time last year I was knee-deep in relapse. The fact that the three of us were on holiday at the time - coupled with this being around Mrs Domino's Birthday celebrations - meant that I really wanted her birthday to NOT SUCK this year.

I know, that's just the kind of guy I am.

The perpetually ongoing 'pass-the-bug' relay has meant that I've been feeling a bit crappy over the last couple of weeks - culminating in me getting a tummy bug from The Child (which she'd picked up at a soft-play centre - AKA the fountain of all evil) over Mother's Day weekend.

I'm underselling it, actually - while I was 'exorcising my demons' (ahem), my legs stopped working and I TOTALLY FREAKED OUT - the idea that a relapse could happen over the same period as last year was almost too much to take.

Following three days total bed-rest where the only things that passed my lips were dry toast and water, this passed - incidentally, my Dad also had this and he lost 1/2 a Stone in weight in TWO DAYS. So - swings and roundabouts?

Anyway - for the wife's birthday the three of us had a brilliant day out at Sudbury Hall and the National Trust Museum of Childhood - it was great (blue badge parking right outside, lifts to every floor), and Evie loved it.

Later that week we went out to a jazz gig (the lady's choice, thank you!) and Mrs Domino declared it the best birthday she's had in years - RESULT.

So it's a wee bit annoying that for the past two nights my DISCO LEG Spasticity has been keeping me awake for hours on end.

I know that Spasticity is a common symptom and it's one we mentioned the last time we went to see the neurology team - which is why the doctor recommended that I try Baclofen. I've mentioned in the past my suspicion of trying any new drugs (following some particularly bad reactions to Amantadine) so I'm trying to avoid it.

But looking at the MS Trust's Spacticity link, the other drug they recommend is Gabapentin - which I took without issue last year.

Has anyone had any experience of taking either Baclofen or Gabapentin for these issues?

the only chart that counts

Earlier this week was my second appointment with local Urology specialist for my lovely bladder-related issues.

My first appointment was way back when - since then either myself or the specialist has been ill.

Or the last time (CONFESSION TIME!), when I hadn't filled out my Voiding Chart so I faked a broken-down car and cancelled.

a fun activity for all!

I know I'm such a wuss - what self-respecting young-ish person wouldn't want to spend three days measuring their drinks and piss in order to fill out a VOIDING CHART? It's such a charming heading...

So a couple of weeks back, I bit the bullet and bought a cheap measuring jug and mentally prepared.

Now I'm no Mr. Trebus. But the whole process was actually pretty fascinating.

Gross, NO DOUBT. But interesting nonetheless.

So a couple of days ago, I went along with my completed homework and a fresh sample.

The thing with MS, one aspect we all (most of us?? TALK TO ME!) worry about is those wacky nerve pathways - messages get lost, are distorted, they arrive too late or sometimes not at all.

This is a bit of a worry, which is only increased by the fact that most people with MS are diagnosed in their 20s or 30s - the time of your life when you're meant to be partying and being all vivacious and fabulous, as well as sorting out your career and relationships - not a time when you want to spend too much time worrying that you might wet yourself.

As previously mentioned, this whole scenario led right to my relapse last year. 

Which is why I'm prepared to put myself through all this - and some of this comes from my experiences of CBT.

Case in point: one things my therapist would do was ask me when I was going swimming (for example). Then she'd ask me how I was going to prepare for it, and what the potential hurdles might be and how I might overcome them.

So posting on this very blog that I was going to spend a weekend measuring my liquid intake and output was a way of forcing myself to take action.

You're all Steve's Little Helpers, really - so thanks for that.

And part of my Bladder Retraining work (see? more glamourous fun!) will be to try various techniques before filling out another Voiding Chart before my next appointment in May.  

Don't let me wriggle out of this!

It's A Shit Business - oversharing in the wilderness since March '09.

exactly where i'm at

A double-header 'Steve's Little-Helpers' post.

I've been taking Rebif since January 2010, with little-or-no (TOUCHING WOOD FRANTICALLY) side-effects. Weirdly, it's such a massive decision - your Disease Modifying Therapy of choice - but I can't remember loads about the decision-making process.

Rebif is one of many trade-names of Interferon beta-1a, co-marketed by the 'lovely' people at Merck Serono and Pfizer.*

But I know that the things that swung it will have included the RebiSmart gizmo - I am a man of a certain age and I do likes me some technology.

HOWEVER there's something clunky and "Heath-Robinson" about the Rebismart - the whirrs and beeps and clunks sound a bit STEAMPUNK, really.

shonky pic of the RebiSmart screen

It's quite sensitive so you have to insert and remove the needles quite carefully - insert it perfectly straight (or as close as possible), remove by pushing it away from you (see shonky image)

I've had a couple of issues with needles getting stuck (long-nose pliers to the rescue) and - hilariously - the batteries running out when I was in the middle of injecting - "Hmmm, why is it taking so long...?"

The main thing for me is the fact that I don't need to see the needle - if I'm going to be doing this three times a week for the foreseeable future, I could really with it being as UNTRAUMATIC as humanly possible.

And yes - there is an option to check how much charge your batteries have left...

There's even an option to track your injection sites but I've never used that, because I've been using the i-Inject iPhone/iPod app, pretty much since I started on Rebif.

The author on Monday evening

This is quite pricey for an app but it can do lots of helpful things - reminding you to do your injection, email info to your doctor, organising any oral meds, record reactions etc.

The main thing I use it for is to track injection sites, making sure that these are rotated regularly - like most people, I have my 'favourite' sites (front of thighs, my butt) which I could happily keep going for (until the itching reaction just gets too much to take) - this keeps me on track.

Also (unlike other apps I've tried), if you really don't fancy going into a site, you can just choose something else - I'll do anything to avoid injecting into my upper arm (especially my right arm).


* A CYNIC WRITES - last year, Merck Serono brought out a plush magazine and a free iPhone app called MySupport. In my more cynical moments I can find myself wondering - if there's this much money in the treatment of MS (neither plush full colour magazines printed on heavy-stock paper which are mailed out at no cost or iPhone Apps are particularly cheap to develop and distribute) - are we EVER likely to see a cure?

But that sort of thinking is really not helping anyone, is it?