little victories

On Friday night we had something like six inches of snow - not masses in world terms, but as I mentioned before, we DO like to make a fuss about a little bit of weather in this country.

Where we live is on a side street so it doesn't get gritted. Which meant that on Saturday, our street, our drive and our car were all completely covered in snow.

50 minutes of fun and games with a snow shovel later, I'd got the drive and the pavement outside our house clear.

Yes, I know his isn't a massive deal to most people. But I was SO PLEASED with myself.

So pleased in fact, that I took a photo and sent it to my Dad and my wife.

If you read the comments and followed the links from my post the other day, you'll have seen that both Its a Shit Business and Stumbling in Flats seem to have started something of a mini-fuss about mindfulness and 'positive thinking'.

With this in mind, look upon my works ye mighty, and feel the raw power of what can be done when you don't take any shit* from MS. Or any other chronic condition.
(* if you're able, obviously)

Yes, I can have bad days. Sometimes I feel very sorry for myself.

But when I feel sorry for myself, does it do me any good? Does it miraculously make me feel better?

Does it make my family and loved ones feel good?

Is A BLOODY GOOD MOAN the magic bullet that scientists the world over are looking for?

I don't think so.

So lets pick our battles and celebrate the small victories. Because eventually these little victories can build up into something greater

Small acorns... mighty oaks... well, whaddya know? It's cliché-o'clock!

In all of this I'm not in any way belittling the very real problems that people have through their MS - I'm very lucky that my symptoms are fairly minor.

But there is a tendency (particularly through the dreaded #mssucks hashtag on Twitter) for people to blow up all their symptoms into another relapse or a stage in their (inevitable?) decline.

Like I said above, this doesn't do any of us any good. And it really doesn't help those that live with us.

(And if any of the above pisses you off, leave me a comment. And enjoy the fact that following the thaw yesterday, the only bit of snow left is the pile I created on my front yard when I cleared the drive - I needn't have bothered! But I'm still glad I did)

other blogs are available

The end of a good week, with my previous post getting picked up and reposted by the MS Trust and retweeted by a couple of other people. Nice - thanks a lot.

I had a board meeting the other night - one of the trustees where I work has also got MS and we had an interesting chat about my recent relapse and her almost complete remission.

She was saying that she pretty much has no ill-effects from her MS, and she puts this down to her mental attitude – which is, rather than thinking about all the things MS has taken away from her, she concentrates on all the things it has given her.

Not that this is all 'happy-clappy' or anything - but this all ties into my adventures in CBT and (for example) the idea of naming your MS. 

I fully intended to blog further about this, but this morning I ended up writing most of it in some (long and rambling) comments on this excellent post on Stumbling in Flats. So go an have a look at that.

And while you're off visiting other blogs, have a look at this amazing post, Why Mindfulness is a Critical Tool for Living with MS on Everyday Mindfulnes.

I'm a recent-but-pretty-much-complete convert to the worlds of CBT and Mindfulness but this can be an incredibly powerful tool for "attitude recalibration".

in your face

I'm not a massive fan of snow - that's not always been the case. For a start it becomes one of the many meteorological issues which we - as Brits - tend to get our knickers in a twist about.

But like most MSers, I don't really need anything else to make me feel unsteady on my feet.

However, a work colleague told me about Yaktrax - and if you can get over the ridiculous name, they're highly recommended.

Basically these are snow chains for your feet - I got my pair over massive walking shoes, Emma managed to get hers over her wellington boots.

The picture below shows me walking yesterday on packed ice (note the sexy grey NHS walking stick I spoke of before). Earlier on that day I'd also walked uphill pulling a combination sledge-and-toddler.

In both instances, it felt like I was walking on... y'know, like, a NORMAL walking surface. These things are so good, I didn't mind getting a few funny looks when I planted my feet in snow and tried to do the twist - and found that my feet weren't moving.

Brilliant.

And like the walking stick, it's just something simple which could mean feeling independent in all weathers as opposed to useless and cut-off from society.

Recommended for all but especially if you have mobility / steadiness concerns.

Edited (22/01/13) : I should say that I am not in ANYWAY on ANY sort of commission for my endorsement!

intermission

Question: Why is being in a hospital so FRICKING exhausting?

Last week was my annual check-up with the MS team at the QMC. Emma came with me because I can have the tendency to, not exactly sugar-coat things, but maybe play things down a wee bit.

Long-story-short:

The Neurologist
We asked him if there were any new treatments in the pipeline. He said:

"Not really"

Basically the pills everyone was talking about recently are, as we thought, mostly for people who have two relapses quickly on the bounce.

So you can keep those, thanks mate. *fingers crossed*

The MS Nurse
Our question for her was about the recovery from my last relapse. I know that Emma was a little bit worried about the length of my recovery and my continued weakness.

But as my relapse only (ha!) ended in May, I wondered if maybe this was normal.

Her answer?

"It might be"

Is this a level of clinical vagueness which is particular to MS?

I KNOW that MS is full of all kinds of wacky unknowns - that's one of the things we all love about it. But sometimes...

The Physio
She had a look at the walking-stick I use (which - get this! - was a hand-me-down from my NINETY-TWO year-old GRANDMA. Which is quite something for your ego to take, i can tell you).

Well. Turns out its an inch too small.

TOP TIP
If you stand normally with your stick at your side, it should ideally come up to the knuckly-hinge bit of your wrist.

So she went and got me one that's the correct size.

Yes it's ugly, NHS-grey and probably the SAME model as my Grandma's current one, but it bloody works.

So there.

should old acquaintance be forgot, and never brought to mind?

When I left University in 1995 - with an eminently (un)employable degree in Music and English - I obviously had to spend a certain amount of time being out of work.

Eventually this all got a bit depressing - so much so that I offered to do some voluntary work in the marketing department of a local theatre. I ended up working my way through the ranks, from part-time in the Box Office to full-time in the Marketing Department to an eventual Head of Department role.

This was all before the place closed down and made everybody redundant a couple of months before I was due to get married.

This is no sob story, however. Despite the fact that most of the people working there spent a great deal of time moaning and trying desperately to get work elsewhere (myself included), the people I worked with at this time are the people that we stay in touch with.

I also met the woman who would eventually become my wife there. And it was during this time that I was  diagnosed with MS. So this was the first place I had the experience of 'coming out'.

Emma and me have worked at different places since then - but we don't really stay in touch with anyone from any of them. Certainly not to the same level, anyway.

It's probably the closest I'll ever come to being down the trenches or something.

A couple of months ago, we went to the wedding of one of our old colleagues from the theatre. And I sat at a table with a bunch of people that I don't see from one year to the next but who I would gladly do anything for if they needed me.

One of my favourite people from this period was Annabel - she was the same age as me but she supervised the Box Office team. We worked a lot of shifts together and knew a lot of the same people from the local music scene. She was such good fun and we had a great time, even when working in a fairly crappy job (basically the same as any retail position with more anti-social shifts and dealing with the artistic temperament).

She was married to Simon with a daughter - I think me and my girlfriend of the time used to look up to them as a really sorted couple of cool grown-ups - they had a house and everything! So we had dinner parties and spent New Year's Eve's together, and we had at least one ill-advised attempt at a camping holiday (never again).

Anyway, Annabel changed jobs a couple of times, she and Simon had a couple more kids, life got complicated. We stayed in touch in that modern not-really-staying-in-touch-properly-sort-of-way (i.e. Facebook) and bumped into each other at events around town. Simon works with local voluntary services and often uses space in the building where I work now.

After my relapse last year he called in to see me, when he told me that Annabel had breast cancer. The treatment was kicking her arse so I wasn't able to see her but I was glad to have a chance to hang out with Simon when Emma and Evie were away in October.

After picking up from him on Twitter last week that things weren't going great, Simon called me a couple of days after Christmas with the news that Annabel had died.

Yes, this hasn't got a whole load to do with MS but if anything, this is a major wake-up call that we all need to start looking out for each other.

If you need to tell someone that you love them, do it now and do it often.

And (on an MS tip, and partly directed at myself) stop whining about what might happen with your condition and get on with living your life as best you can.

No-one (MSer or otherwise) knows what's going to happen so shut up and enjoy life because as far as I can tell the other options really SUCK.

RIP AVH x

shit happens

A weird week, and a perfect reminder that it's not always MS.

So for the last couple of weeks, I've had a seemingly-endless crappy cold.

Yes, it's just a cold. But throughout this - probably because I'm such a slacker - I've been going into work as usual.

(as an aside, this cartoon appeared in our paper right in the middle of all this - round about the time a colleague complained about having MY COLD)

Plus now Evie is around, it's almost like a never-ending game of PASS THE BUG.

We've all had this cold, which has led to many disturbed nights' sleep.

So you can imagine how pleased I was when yesterday we were all convinced I was having a relapse. Inability to lift my legs, inability to carry anything, loss of manual sensation, lower levels of cognition, blah, blah, blah.

It was a really hard day for us all, coming so close to Christmas, and at the end of a fairly shitty year.

For the last week we've all been waking each other up with coughing and spluttering so last night we decided that I should use the spare bed in the office we spent so long clearing out earlier this year.

So after a decent night's sleep, my legs are "back on-line", my brain seems to be okayish, and I can carry things.

Within reason - this morning, I totally passed-out in our kitchen. Which was nice. In my mind, I look something similar to this (although it's just a little bump in reality).

As such I'm working from home today - in our lovely office.

So why share all of this, especially after my recent rants about the MSer trend of MOANING ALL THE TIME?

Just to give it all a bit of balance - another time, this might've turned into a full-blown relapse. But more often than not, there might be other elements at play. There're a lot of shitty viruses out there, so don't do like I did and continue to drag yourself into work regardless - we all need to look after ourselves, yes?

But hey! I received my Disability Living Allowance Christmas Bonus for 2012* the other day.

(* genuinely this is what it's called! I've never won anything in my life before - LUCKY, LUCKY ME)

That extra £10 (TEN WHOLE POUNDS!) will go a long way. I was chatting with my Grandma the other day - she gets enough for a months gas bill.

I'll be lucky if I manage to get a box of candles!

medical/individual < social

So a couple of weeks ago, at the request of my boss, I went with him to have a talk with the Equalities Officer.

This was because (and I'm paraphrasing here), my "next relapse is 'in-the-post' and we need to prepare."

(Friends on Twitter might recognise this from a tweet from earlier this year - it has taken this long for us to meet up)

My boss has quite a way with words but I do see it from his point of view: I work for a small not-for-profit organisation and if I have to take, say, 6 weeks to recover from a relapse (like I did earlier this year), then it can be hard to absorb this within the team.

So we talked about a lot of things, about my difficulty with certain aspects of my role, etc and I could tell that my boss was finding this all very difficult. But we came up with some ideas which will help us all - most of them REALLY FRICKING OBVIOUS.

Case in point: we've just completed a massive project, and as part of that we bought three laptops.

Which have all been sat in a room at work.

The idea was mooted that if I had one at home, it might help me to stay in touch and even maybe do some work from my sick-bed during my next relapse.

Like I say, obvious stuff but it was very helpful for us both to have someone independent who could listen. It was kind of like couples therapy in a way, and we both agreed that it was good to talk about some fairly awkward issues.

Anyway, there was a little bit of FALL-OUT from this discussion which I'll cover at a later date.

(oh, the suspense...)

First up, the Equalities Officer is someone that I saw way back in the days immediately after
Relapse 09 - Part Two so I knew she had my back.

At that time, she laid a real mind-blower on me, when she picked up on my feelings of shame and inadequacy following my diagnosis and "relabelling" as a DISABLED PERSON.

She told me about two different ways of looking at Disability:

The Medical or Individual model
(which suggests the disabled person is the problem)

And

The Social Model of Disability
(which shows the barriers are the problem)

Now. This might not be news to you. I'm not the sharpest tool in the box.

But she was able to pick up that I was TOTALLY living the Medical/Individual model, seeing everything as my fault.

Seeing things via the Social model was - and CONTINUES to be - a real eye opener.

PLEASE NOTE

This does not absolve us of responsibility.

If anything, this means WE have to shout louder about the things we need to get by everyday.

Not just whining about the symptoms we all have and acting the victim.

This just makes us seem WEAK, which makes it so much easier for people to ignore us.

Here endeth the lesson.

(see illustrations of both models below - hope these are accessible to all, I'll sort it later if not!)