but i don't want to be THAT guy

And after newbie’s euphoria comes… this.

Last night was my second session of Tai Chi. I saw the tutor beforehand, who told me that everybody forgets everything they’ve learnt. In fact, she said that when I went home that evening, I would be able to remember what we did last week – but nothing from this week. Which turned out to be true.

I really enjoyed the warm up and I get the fact that what seems complicated at the moment will eventually (hopefully?) turn into muscle memory as opposed to the Directors Cut of King Arthur On Ice.

However, the main thing I took away from last night was how appalling my balance is and how incredibly weak my legs are. And it made me feel very, very self-conscious in a room full of strangers.

I know – BLOGGER GUILTY OF SOLIPSISM – steps back in amazement, I’ve never heard the like, etc.

And I don’t want to be a master of Tai Chi – but I do want to be a little less shit.

Like I said, the warm up and the focus on breathing are great – it’s just when you have to string together phrases and are required to place your foot down slowly heel-to-toe. The word galumphing springs to mind. And I have literally no idea where my hands are meant to be at any point.

In reality, I know that no-one in that room is going to be marking me down – we’re all too busy looking at our own feet.

The reason I’m doing this is to try to stave off my (inevitable?) physical decline, which feels more and more noticeable (and, yes, inevitable). The idea of leaving the house without my stick and/or car seems frankly ridiculous. But I need to keep moving – otherwise I’ll just stop, right?

Later that day I was talking to my wife about all the great holidays we’ve been on in the past and how we’re probably never going to do anything similar again – and that really hit me hard.

It’s the occasional subtle reminder of just how much you’ve lost – MS is truly a condition which takes and takes.

As an aside, I’m the Vice Chair of a group to do with where I work (CULTURAL ELITE) and the Chair is stepping down – interestingly she’s the person who got this job way back when. Anyway, I just mentioned to her earlier today that I wouldn’t automatically be stepping up to take the Chair’s position when she left.

And she said, “Steve, you’re f**king amazing, why wouldn’t you?” – I swear I nearly broke down at her feet.

I can talk a good game about the Spoon Theory and it’s failings, and that "it's at least part of a culture which encourages people to think about what they can't do instead of the things they can". But I’m just as guilty as anyone of taking the easy way out.

Will I be going to Tai Chi again? Yes. 
Will I position myself by a wall? HELL YES. 
Will I beat myself up for not maintaining the proper form? Probably – but I know I shouldn’t.

And will I step up to lead the CULTURAL ELITE to a brighter tomorrow? Hmmm…

strange moves

Earlier this week I went for my first session of Tai Chi. We do these classes where I work, I get a free ticket and I’ve been hearing about the potential benefits for people with Ms pretty much since I was diagnosed.

So it seemed like a bit of a no-brainer.

I did a course of Pilates a couple of years back – actually it must have been longer as I would probably have written about it on here – and I’ve dipped a toe into the waters of Yoga intermittently over the years.

Also – New Years and all that.

I had a quiet word with the instructor before we began and she said she’d heard that Tai Chi can be beneficial for people with MS (although she’d never knowingly taught anyone with MS before).

Despite being mad as a box of frogs she was lovely and told me to leave any phrases / poses I was uncomfortable with (I explained that my balance is a major issue).

I really enjoyed it – the focus on breathing and posture should be really helpful for me in my quest to avoid my body completely seizing up. It’s early days but I’m going to try my best to stick with it (although I didn’t appreciate her comment that when the weather improves she’d be taking the class outdoors – it’s a little out of my comfort zone as it is, with classes in a closed studio with little natural daylight!).

After the class the tutor made a point of telling me that I’d done well and asked if I’d be going back – I definitely think I will. BTW I didn’t tell the tutor that I worked there until after the class had finished.

A colleague of mine who’d done the class previously warned me that I’d ache in the morning – but I’m pleased to report that I actually seem to be less stiff in the morning than I am usually. I’m quite prepared to concede that this might be Newbie’s Euphoria or something but we’ll have to see over the coming weeks.

The whole form is insanely long and when I tried to demonstrate the brief phrases we’d attempted in class at home, I was delighted to find that I couldn’t remember anything beyond The Opening. Which is nice.

I was really nervous before I went in, so – as is the way these days – I tweeted the fact, which led to the following discussion:

Frank is probably best described as a tightly-coiled spring in person, so this was a genuine surprise to me. He's also the genius behind Frankie Machine, the band I played guitar and keyboards with at Indietracks in 2011.

the most retrospective time of the year

I swear I'm not out to get the MS Society but this kind of tweet is the very height of mawkish sentimentality, is it not?

As I prepare to do some serious desk-tidying on my last day at work, I'm going to look back on 2014 - quite changeable, I think you'll agree.

This time last year we were bracing ourselves for many drunk shenanigans from our neighbours - as a sign that Derby is [makes tiny gap between fingers] *this* big, it turns out that my mother in law knows someone who knows HIM.

Which is how we found out out a few weeks ago that SHE had dumped HIM, SHE had a new boyfriend and HE was heartbroken.

A week or so after finding this out, we saw them out shopping together - and we remembered that the same thing happened last year - a noisy bust-up followed by a pre-Christmas reconciliation.

Ain't love grand?

Speaking of which, I recently started receiving emails about my ex-girlfriend's iTunes account - either she hasn't updated her secondary-contact information or this was the most sophisticated and specific phishing attack EVER.

We split over 10 years ago and haven't kept in touch [as an aside, why do people do that? There's a reason why you split up!] but when I got an email with her address details, I thought I'd reach out, say Hi, suggest what the problem might be, and wish her a Happy Christmas.

The silence since has been deafening.

Finally, we thought we were heading for a conversation which every disabled/chronically-ill parent dreads the other day.

As has been mentioned before, my daughter is pretty matter-of-fact about the idea that daddy's legs sometimes get tired - he needs to use a walking stick and is sometimes a bit wobbly. The other week she went with her nursery pals to a nature reserve and when she returned was pleased to report that there was a ride that daddy could go on which was for Distabled people.

So far so adorable - but the other day she started crying asking will she be distabled like daddy when she grows up. We tried to comfort her (she's three-and-a-half so wouldn't understand the concept of something being "statistically unlikely") but she still kept saying that she would be distabled too.

When we comforted her further it became apparent that she actually wanted to be distabled. We asked her why and she said it was because she wanted daddy's disabled parking badge. And walking stick.

She's a 'nana.

Happy Christmas if you've read this far! Let's all hope for a healthful New Year.

x

a very, very, very fine house

all our stuff - in a VAN

And having missed out a whole month we're (sort of) in our new house. 

We were lucky enough to be moving into the house of a friend of my wife's family so were able to move out stuff in gradually, even before we'd signed any rental agreement. 

But at the end we seemed to spend a whole lot of time waiting for our buyer to give us any instructions and we kind of took our feet off the pedal. And then all of a sudden they turned round and said that they had to move in at the end of that week. 

We gnashed our teeth and ranted and raved. But with the sure knowledge that people should be careful what they wish for, we steeled ourselves and said, "You want it? You can have it". 

That week was obviously the longest and most demanding week at work that I have ever had, so most of the shifting and planning fell to Mrs. D and our amazing families. And our old house wasn't as clean as we would've liked it to have been when we handed over the keys [not that it was dirty you understand] but at the end of the day it has gone. 

As I write, we're still at Mrs. D's folks' while we get straight but it's taking shape. And the new house feels more like a home than the other house ever did. 

It's still pretty frustrating that we were forced out of a house which we owned, and the changes in lending coupled with us being a one-wage family mean that we've had to go into a rental property, but it's so nice to know that whole situation is finally over and done with. 

And the further away it gets the less it bothers us. Onwards and upwards. Can't wait to spend Christmas in our lovely new home. 

My previous MS Society-rattling post got a bit of interest, not least from the charity itself. I'd tagged it in a tweet when I first published the article [on September 29th] so I expected a conversation at least. So I was genuinely pleased to get this a couple of days later:

Since then, the silence has been frankly deafening. The most engaged debate was on this very blog - it would've been interesting to get a bit of a discussion happening with the many other MS writers/bloggers/activists I follow on Twitter, most of whom follow the MS Society. 

Even if they think I'm full of sh*t, I'm interested in the logic behind THAT organisation using THAT phrase on THOSE items. 

I know it's popular among some members of our community but for all the reasons I mentioned I still think it's icky. And I stand by them. 

In my (to my mind) righteous fury, I'd forgotten that it's also the title of a blog written by the person who chooses the "blog of the week" on the Shift.MS Facebook group.

So I guess I won't hold my breath before I get picked for that particular accolade again. 

biting the hand that feeds

Long-time visitors will know that I am a bit of an arse and as such I have a number of pet-peeves – including but in no way limited to:

• People who moan all the bloody time [a bit rich, Mr Domino?]
• The bloody Spoon Theory
• Inspirational aphorisms  - “I have MS but it doesn't have me” (oh really? Is this on day two or day three of your steroid infusion?)

This week, I've hilariously added the MS Society to the list...

I fully appreciate that the charity obviously does a huge amount of good work for people like me who have been landed with this crappy condition. But sometimes I do get cross with them.

The other day we received a copy of their Christmas catalogue and there were a number of items sporting the slogan, "I'm not drunk, I have MS".

I admit – in the early days of my diagnosis, I might have had a bit of a rueful chuckle at that. But now it just gets my back up.

By linking being drunk (a potentially pleasant experience which doesn't last forever) with MS (deeply unpleasant at times, no cure at present) are we not belittling ourselves and the condition we struggle with on a daily basis? Some people could see this slogan and think that, if being drunk and having MS are so easily confused and interchangeable – even on the most basic level – well, what's the big deal?

So far so nit-picky.

But my real problem with it is that as a statement it's arsey and juvenile – and not a little confrontational. Yes, some people need educating and they shouldn’t jump to conclusions about people's situations – but is being so "in-their-face" all that useful?

It links to my thoughts about moaning above – like the Sp*on The*ry, this kind of thing just makes us look all whiny, complainy and weak. And speaking personally, if I'm talking to someone and they try to lay something on me in a similar fashion, nine times out of ten I'll make my excuses and avoid them.

I get that this kind of thing could spark a conversation which could allow us to advocate for our condition – but the slogan is on items in a Christmas catalogue. If I presented them to (for example) my mum or even work colleagues, they would think (with some justification), "oh God, Steve's banging on about his MS again – does he really think we've forgotten? We know. We wish we could do something about it."

On the whole, the people who will see this statement (on a T-shirt or a pint glass) are already on our side – we're preaching to the choir, to the people who already have our back. 

It's not as if a t-shirt is going to alter the perception of someone who makes a daft comment when we're staggering down the street – that level of education is somewhat bigger than a bottle opener. And yes I know the conversation has to start somewhere, but is this really as sophisticated as our argument gets?

I'm really not trying to pick a fight with an organisation which does so much good. But I've seen the kind-of passive-aggressive attitude implied by this slogan a bit too much in the MS community over the years. People who almost rear up to offload their symptoms in the opening rounds of a game of Disability Bingo, scoring points when they find out that I still work full-time.

And I'm not denying the cathartic power of this phrase when we're feeling a bit crappy - but on a t-shirt? As a major campaign slogan for (arguably) the leading MS charity in the UK?

One final point which my wife made - if someone is walking down the street and their gait is so poor that they look inebriated, maybe they should be using a walking stick? Or some other kind of mobility aid?

I've talked on here in the past about my initial problems with using my stick. Maybe the MS Society's time might be better spent destigmatising (certainly amongst younger people with MS) the use of sticks / walkers / wheelchairs.

FINALLY finally, here are a couple of alternative slogans – feel free to appropriate!

• Myelin, Mai Tai… Your round [needs more work but shows promise]
• I am drunk AND I have MS! [probably my favourite - especially if it says Let's Party! on the back]
• I have a chronic neurological condition, therefore I drink [a bit long for a t-shirt – maybe a scarf?

And of course, my old favourite - I have MS (it is what it is)

monday evening epiphany

A sudden, not-especially profound realisation while I was doing my Rebif injection - not quite 30 seconds ago.

The train of thought went something like:

"Here we are ..."

"... injecting these drugs again..."

"... no one really knows for sure if they're helping..."

"... but at least I'm doing something..."

"... I guess it could be the wrong something??"

"... Still... Better than nothing..."

"... Huh..."

"... Isn't this how most people justify religion?"

So there you have it. My Rebismart injector really does take that long and I am a bit of a smart-arse, even when I can be pretty sure that no one can hear me. 

Apologies.

ADDENDUM - 23rd Sept

It might sound flippant but I realised when I was having that train-of-thought that Medical Science is now my religion (or at the very least fills the gaping void at the heart of me where religion 'should' be).

It might even be the same for you but at best it's a level of blind faith.

SOMEONE told me that doing something [in my case injecting Rebif] would slow down disease progression so I've been doing it ever since. While my relapse rate is [touches wood] pretty much the same as it ever was, I get noticeably tired and I'm a bit forgetful - but then I am very much the wrong side of 40.

Still - at least I have the option (through the twin marvels of the NHS and Medical Science) to do something about it. And it's got to be better than doing nothing, hasn't it?

(don't) lean on me

one of these men could've been me

We had quite a cultural weekend - first up we went to see a performance of FLOWN by the wonderfully named Pirates of the Carabina.

This was one of the maddest shows I've ever seen - one of those performances where you can tell how good at their jobs people are, by how easily you're able to believe that they're TERRIBLE at it.

The blurb calls it "confidently choreographed chaos", which is pretty much perfect. Performers were flying over the audience's heads on bungees as the show "went wrong" all around them. The fact that everyone was able to sing and play musical instruments while they were performing incredible physical feats was just.... teeth-gratingly annoying.

In a good way, obviously.

It was a show where you can get a bit blasé about the things you're seeing - "oh there's somebody supporting their body weight with two contact points on a vertical pole. And they're not even wobbling..." - before you realise just how incredible that really is.

Here's a trailer:


This show was the launch event for the big cultural street arts festival that I've mentioned in the past, which is on in a week or so. This is quite exhausting at the best of times, but especially so when - as has happened - the only other person who works in your department has left suddenly. This doesn't impact so much on the festival, but it does mean that there is a shed-load of work which needs doing back at work at a time when I'm traditionally run ragged anyway.

Long-time visitors may remember that one edition of this festival pretty much led me into a relapse. And I wasn't even trying to sell my house at the same time then...

Anyway - although it is undoubtedly  in the post for delivery at some unspecified point in the future - it isn't showing up if I can help it.

Anyway, FLOWN ties into the new area that we're hoping to move into at work, which is Contemporary Circus. And another part of this is a series of Street Circus events which we've been organising in our local Business Improvement District (BID). It was the last of these at the weekend so we pottered on down for it.

It was great - although I do wonder that it's not really a job for a grown-up. Plus it looks like so much hard-work - effectively each of the guys we saw was performer, narrator and audience development coordinator, all rolled into one!

We were pretty settled on a bench with a picnic lunch, and because we were pretty settled we got fairly involved with a bit of pre-show banter with the perfomers. So it shouldn't have come as a big surprise that the "big healthy-looking young-ish family man" was invited up to assist with one if the acts.

I genuinely didn't know what to do so obviously I got up and made my way onto the performing area, while our technical guy tried desperately to catch the performer's eye with the international "not a good idea" sign.

Anyway, as I made my unsteady way over to him [without using my stick, as I didn't want it to be turned into a joke], he obviously clocked my discomfort and said "Are you OK? Look, if you'd really rather not, I don't want to make it any worse...", at which point I made my excuses and sat back down.

The image at the top of this post is NOT me (although he is clearly another speccy dad of a certain age). I'm so glad I wasn't involved, otherwise we'd have all been on the floor.