as we go up, we go down

So my MS MOT was as exhausting as always. Who knew sitting in a hospital all day could be so tiring!

We got there in enough time to grab a coffee before we made our way to the waiting room to do some GRADE A WAITING.

For some reason they always have a TV tuned to a programme which features somebody you'll never meet buying (or selling) a house (or an antique) that you will never visit (or see). If you're really unlucky it's a mawkishly sensationalist programme about somebody you'll never meet having some kind of 999 Emergency.

The neurologist was obviously running behind because the nurse asked me if I wanted to see the physio straight away. I didn't have anything in particular that I needed to say to her but it beat the heck out of sitting in the waiting room.

We had a quick chat about my intermittent adventures with walking and swimming and the benefits thereof, before she had a quick look at the stick which she had given me last time. She thought it looked a bit worn and rickety so she toddled off to get me a new one. Very nice!

Then it all started to go a bit wrong.

The main thing I get from these sessions is a talk with one of the neurologists - to talk about treatments, future developments, and to check that the drugs I'm on are the right ones.

But the door we entered was marked Registrar. Now, this is probably a very high pressured position, requiring a dizzying amount of training, education and commitment. I'm not belittling it and I certainly couldn't do the job.

However, this particular guy took TWO mobile phone calls in the five minutes I was with him - at one point he sent a text message while I was answering one of his (borderline incoherent) questions.

Me and Mrs. D just goggled at each other. During the 2nd phone call, she walked out to find a nurse in order to make sure we could talk to someone else as soon as possible.

When he got off the phone (2nd call) I asked him to turn it off but there was no point as he was rapidly winding up our chat.

The NHS is a wonderful (if woefully under-resourced) thing. And the team was obviously under-staffed on that particular day.

But this is the ONLY chance I get to talk to a member of the team from one year to the next.

Obviously I can call the (fantastic) MS Nurse team anytime, but often then I'll be in the middle of a suspected relapse. Advances in research and / or the latest medical interventions are not at the top of my chit-chat list.

We eventually had a really good talk with the head neurologist. In summary:

• Rebif is still one of the first-line treatments they prescribe and as I'm tolerating it well (and because it has been two years since my last relapse with no new symptoms of note), there's no real need to monkey about with my treatments. Most of the newer treatments are designed for people with much more advanced symptoms.
• If my Disco Legs continue to plague me, I could stand to increase the Gabapentin dosage (I currently only take 300mg a night).
• We had a good chat about Vitamin supplements (basic advice: FILL YR BOOTS WITH VITAMIN D)
• Also my most recent blood tests (if there are no family members reading this, I'm a little bit anemic - if I'm related to you, EVERYTHING IS FINE)

So nothing new. But it was nice to hear it from the top.

If we'd have left after seeing the Registrar, we'd be thinking what was the point?

life in miniature

Example Doll's House Walking Stick

My daughter's current obsessions are:

• Mr Men books (particularly Messrs Grumble and Forgetful)
• On-going Kermit obsession (YAY!)
• Doll’s houses

Particularly my wife's old doll's house, which they are spending a lot of time fixing up (with Granny). The amount which you can spend on Doll's house bric-a-brac is frankly astonishing. But the best place to get new stuff is our local Sue Ryder shop – so that’s something good.

One of her last purchases was a family and some bits and bobs of furniture, which included a hat stand with umbrella and walking stick.

Evie spent a fair amount of time at the weekend trying to get the 'Daddy' of the family (surprisingly effeminate, actually) to hold the stick.

That was a bit of a lump-in-the-throat moment, but on reflection I think it's pretty cool. She's very matter-of-fact about getting my stick for me before we walk anywhere, and I think she has a healthy awareness of the NORMALCY of DIFFERENCE, if you follow me.

Her favourite TV show is the brilliant Something Special, which is a lovely show for kids with learning difficulties. They also sign a lot using Makaton on the show, something we find ourselves doing too!

(NB Justin is worryingly ubiquitous as far as kids TV is concerned but Something Special buys him a lot of grace)

She's also matter-of-fact about the fantastic presenter Cerrie Burnell – I still can't believe that some parents complained about her when she started presenting, rather than using her to educate their kids that not everyone is the same.

Gah – people.

I had my annual appraisal at work last week. We never discuss my health in anything but the most rambling and discursive manner – so when I got the notes back, I took offence to the section which said Steve "had a good year physically and although feels tired at times manages this well".

I know, he means well. But it really has nothing to do with my work over the last 12 months. I asked him if he gets tired.

He removed the offending line from my notes.

As an aside, Evie also accepts that Daddy's legs sometimes "get tired". But she’s not yet three years old.

-

HOUSE news – ours will be on the market by the end of this week. There has been much STUFF happening with the neighbours but I'm aware that I don’t want to endlessly bang on about it all the time. I might try to do a compendium of recent activity. Or I might wait until we move. Who knows?

Tomorrow is my annual MS MOT with the neuro team and MS Nurses at the Queen's Medical Centre – should be fun (and/or physically / mentally draining).

fun times in babylon

Father John Misty - "Fun Times in Babylon"

The Father John Misty album has been on heavy rotation round my way since I bought for my brother a couple of Christmases ago - what can I say, it's the gift that keeps on giving.

Anyway, a thought popped into my head this morning - "Whatever happened to Chris?" 

A little context may be required.

At my school, I wasn't one of the cool kids and I wasn't one of the weirdos. I was more in the middle with friends on both sides - probably the safest way to be.

I was into odd music played by bands with strange names and I liked films and enjoyed reading. Plus I was actually in a band at the time - I played my first gig at a pub in Nottingham (The News House - it looks much nicer nowadays) when I was 14.

Growing up in a staunchly working class post-industrial town, that kind of thing really doesn't impress anybody (it was all about your precocious bum-fluff moustache and your provisional driving licence at my school).

Eventually of course, my ship came in when I got to college. It was here that I basically invented the persona which I carry to this day - The Me That Makes Me Me, as it were.

Basically, this was the archetypal Revenge Of The Nerd. And now I was cool I was going to be snarky and clever and cutting and endlessly sarcastic. Sounds awful but it was actually great fun. Plus I even kissed a girl during this period.

I ended up doing three years at college, eventually getting five A-levels - at the time, no-one tells you just how useless these bits of paper will be in the real world.

Anyway on one of my final year courses I met Chris. He seemed really young (I guess he was) and he was into laughably shit music. At the time I was renowned for my compilation tapes which I used to slave over endlessly - so for some reason I took Chris under my wing (not at all patronising, eh?) in order to show him that THAT was shit but THIS was the good stuff.

(If it's any consolation, I'm embarrassed to write all this down)

We hung out a lot - he even persuaded me to see Pavement's first-ever UK gig, which for some unknown reason was in Derby in 1992. So I wasn't all that cool after all, was I?

Anyway we drifted apart as people do. And in May of 2012, Chris sent me an email out of the blue - he'd been chatting to someone about obscure bands (Beat Happening, Codeine, Galaxie 500) and as my tapes had introduced him to them, I'd popped into his mind so he wanted to reach out. He was living in London but was frequently back in 'the hood' (as we never call it) if I wanted to hook up.

I responded:

what a blast from the past!

great to hear from you - i tried to listen to some Codeine when they announced the reunion dates, jesus they're depressing - it's no wonder i had no luck with the ladies! i was just a big gob with strong opinions about music, not changed much since then.

anyway, you dragged me along to see Pavement's first ever UK gig at the Wherehouse - i think that makes us quits.

life is good, the only dark cloud has been my diagnosis of Multiple Sclerosis about 7yrs ago - doing ok on the whole with it but it's always there - getting old sucks yeah?

... followed by some innocuous guff about being married and the family. I've just read the whole email through and it's fairly light and frothy (apart from the MS bomb, obviously). I think the day I sent the message was one of the first days I was back at work following Relapse 2012, so my health was very much in my mind.

So I clicked send and expected him to get back in touch.

And then nothing.

I'm friends with his younger brother on Facebook (he worked in a cool record shop in town) and last year we had an exchange about some gigs we were going to see*, so I nudged him about his brother - still nothing.

I don't really know why he popped into my head this morning - we weren't that close so it's not as if I'm devastated by his lack of contact. And my MS was quite the turd to drop in our conversational punchbowl.

But it got me thinking about the ways in which different friends have reacted to my illness - and this is not going to turn into one of those YOU DROPPED ME WHEN YOU FOUND OUT ABOUT MY CHRONIC ILLNESS SO NOW I HATE YOU AND I'M BETTER OFF WITHOUT YOU-type posts.

I'm really lucky - the worst that happens is one of my friends pointedly asks me "[pause] so... how are you doing?". It's not that unusual, but he asks it in the middle of a conversation, even after asking how I am at the start, so I know what he's really asking about. Yeah, I know - sucks for me.

At best, when I'm deep in relapse another friend will make a point of checking in almost every day, bringing books / DVD boxsets / music or just dropping by to shoot the shit - all are greatly appreciated.

My point is, I've been incredibly lucky. And it can't be easy for the friends who I've shared time with to adjust to the changes in me - however small I think they might be, I am now fundamentally a different person because of them.

Yes, some people have drifted, but I read something by Oliver Burkeman a while back which said that we shouldn't feel bad about friendships tailing off. Maybe they have a shelf-life - it's ok for that section of your life but not this one. And that's totally natural.

If you're reading this Chris, I hope you're doing ok.

--

(* Me - Shellac. Him - the reformed Pixies, whose original line-up I saw in Nottingham in 1989. See? I'm still a massive nob about music! I'm lucky to have ANY friends!)

privacy settings

I had an interesting conversation with my brother over the festive season, which has been on my mind ever since. But the reason for me finally getting this published was a thoughtful, kind-of related post on SwissLet's blog.

I blog here under the name stevedomino - this is an overhang from my days as a member of Derby's burgeoning still-born "indie" "music" "scene" and my old band Johnny Domino - since then it has been my user name of choice.

(Incidentally, my previous band was called - for reasons too arcane to go into here - The Millers, so for that period I was sometimes legitimately referred to as stevemiller - the days were long, dark and seemingly endless round these parts...)

Anyway, you don't have to be Nancy Drew to find out my actual full real-life name - even if you don't listen to revealing radio interviews (where I also reveal the name of my employer), a quick glance at my Twitter profile will provide the key to my not-so secret identity...

WARNING: this man may crack under questioning

Plus the linked posts which I write for MultipleSclerosis.net are all under my own name.

I have tried to be careful about protecting the identities of people in my life (mostly... when I remember...), particularly my wife. But I know that in the past I have given away such tidbits as this just through being a bit clumsy.

The first MS blog I read which didn't make me want to GOUGE MY OWN EYES OUT was Jackie Zimmerman's MSunderstood (no longer online, unfortunately) - here was a writer who didn't take anything lying down and wasn't ashamed to talk about the (often humiliating) symptoms her conditions threw at her - plus she continues to be a constant force for good in the universe.

The fact that Jackie (and her colleague Dana) used to write in their own names led me to do the same when I started a blog as a way to sift through thoughts in my head which were mostly to do with my health.

Plus I don't know anyone my age (or even in the same basic age-ly ball park) with MS in the Real World.

The idea that the blog would find an audience - however small - was genuinely the last thing on my mind - if it was otherwise, I'd have chosen a blog title without a MILD SWEAR in it.

Somewhere along the way, I became convinced that this was a form of activism - a way of presenting a different face of living with MS than the one which is traditionally in the media.

As such, my logic went, why do it in anything other than my own name? I'm certainly not ashamed of having MS, nor am I particularly shy about "coming out" in person.

Now I know that there are many MS bloggers - certainly more popular and entertaining than I - who write behind user names and avatars, which is entirely their prerogative.

And I don't judge in any way, nor do I assign my own potential paranoias or shames to them. God knows, I know that I'm my own unique mess.

Anyway, over Christmas I was talking to my brother and he said that he'd read something on this blog, and that he thought it was weird that I would put it out there in the public domain for strangers to read. Why didn't I just talk to people?

(He also totally doesn't get Twitter)

And for some unknown reason, the fact that he'd been reading the blog royally weirded me out and I didn't really know why.

Was it just because he's someone that I know intimately in real life?

It's not as if this blog is a no-holds-barred literal representation of every crappy symptom and/or humiliation, because (a) that would be dull and depressing, and (b) there are some things which I'm uncomfortable being "out there".

So, it turns out that in some ways, blogging under my own name / image actually prevents me from being as honest as I could be about my MS.

(Weirdly, this was not the conclusion I expected to come to when I started writing this post!)

Anyway, my brother said that he didn't want to appear on this blog. So apologies, dear brother...

... although I did say at the time that I would use the conversation we were having in a future post.

your call is very important to us

Earlier this week I was called at home by someone doing some research on behalf of the MS Society. They wanted to get some feedback about various services that I'd accessed.

Now obviously I'm DOWN WITH THE CAUSE. But they called at half-past six. I'd not long come back from work, my parents had just brought Evie home after looking after her all day, and we were in wind-down before wine-time mode.

So I asked if they could call back. They said fine.

At half-past six the following night they called again, right in the middle of the wind-down once more.

I explained that I'd been through this the night before and that I'm more than happy to do any survey for the MS Society, but could they email the questions to me?

No, it had to be done over the phone.

I explained to the (perfectly lovely) caller that this wasn't ever going to be a good time of the day to speak. Work, child, etc.

It's (mostly) a finely-tuned machine (sometimes). 

So she said (again, she was perfectly lovely about it), "Ok, I'll call you in the morning".

To which I replied, "But I'll be AT WORK". 

I'm probably being insanely over-sensitive. And I know the society published findings which said that “It is estimated that between 23 and 32 per cent of people with MS are in employment”- so basically only a quarter of us are still in any kind of work. 

But still it saddened me that the person calling - on behalf of the MS Society (not from them) - would make the assumption that, if a person has MS and they're talking about work, there's NO WAY that work will be full-time. 

I've been a bad mood about this ever since - if this is the attitude of people working in the name of one of the biggest MS charities in the UK, will the fact that people with MS don't feel able to remain in employment become a self-perpetuating prophecy?

People who are newly diagnosed could read these figures and go, "OK then, I might as well give up now". And I do appreciate that some people have a considerably greater level of disability than I do currently.

But still, it's not THEIR FAULT that they're disabled. 

What is society going to do to make them feel that they have a RIGHT to contribute and be fulfilled, doing whatever it is they want to do? * 

In my head I keep going back to the different models of disability - it's not the individual's fault, it's the Disabling World. 

(* the irony is that I HATE work, have never a had a completely fulfilling job, and would happily jack it all in tomorrow if my numbers came up. But still... Raah!!) 

I'll stop working when they stop issuing plush anniversary box-sets of key musical-texts of my young adult life - it's not going to buy itself now, is it?

manifest destiny..??

So the walk into work happened today. And it was fine. As I knew it would be.

I feel much more energised and mentally switched on at work today. As I knew I would do.

It's genuinely the case that, if I'd not written yesterday's blog with my "non-resolution", I probably would've found some excuse not to bother.

So Thank You for giving me the motivation. I would've felt like a loser if I'd given in to the niggling little voices in my head!

The fact of the matter is, I've noticed that my legs have been getting increasingly weak, and the nighttime DISCO LEG spasms have really been getting crazy.

If a little bit of walking can help stave off the (inevitable?) progression of my MS, then it's kind of a "use them or lose them" sort of situation.

Plus, it'll give me more motivation to jump around like a loon to this song with my daughter.

the art of peer pressure

You'll be pleased to know that I don't believe in New Year's Resolutions – so I can’t make one of them "blog more regularly"...

Anyhoo, how've you been? Good I hope. Here's the headlines:

Christmas (remember that??) was great – we've finally got our head's round managing the time we spend with our (lovely) families at Christmas – they just want to see Evie but we need to keep her in a bit of a routine for our own sanity. I think we got it right this year, and had some lovely days out just the three of us.

The image above is from one of my favourite days, when we had a lovely walk around nearby Kedleston Hall (20mins drive away from us).

[section removed]

Now a little confession - for one reason or another, I've been neglecting to make the walk into work recently. We're still going for walks as a family at the weekend but long-time visitors may remember what a big deal I made about this seemingly simple aspect of my day last year.

I'm determined to get back onto it ( however it is difficult to get motivated when you've had a disturbed and stressful night's sleep) so this another one of those things where I publish a blog in the hope that it will kick me up the arse and get me to stop making excuses.

I will walk into work before the end of this week - it's strange how terrifying it is for me to type it!

But on the day after a study finds short bouts of moderately intense activity can have a big impact on tiredness levels of people with MS (which let's face it, we all know anyway), what have I got to lose?

On top of the short burst of "Yogo" I do with Evie in the morning (she's surprisingly persuasive), I'll be Supersonic by year-end.

(But still, NOT a resolution).