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!)

from the (not that) sick bed

We'll try that again - seeing as the new-and-improved Blogger app just lost my long draft!

TWICE!!

So I'm at home on a sick half-day off work - no biggie, just a stinky cold which has been bubbling under for a week and which refuses to shift.

incidentally, the only good thing was the husky voice which developed over last weekend - in my head I was convinced I sounded like Tom Waits / Lee Hazelwood / Johnny Cash, until a colleague said I sounded like a Muppet. Which is obviously even better. Anyway...

So I'm trying to do the thing that I always say to people when they NOBLY come into work when they should really be at home in bed. Plus I haven't updated this blog for ages because real life keeps getting in the way.

First up, many thanks to all the people who either tweeted or left a comment on the last post - the one where I was debating whether to get involved with another round of LinkedIn-fisticuffs.

Pretty much everyone was of the opinion that I should wade in. It's good to know that if we'd known each other at school you'd all be offering to hold my coat, rather than holding me back to prevent another humiliating beat-down. Cheers.

Anyway, I DIDN'T post my response.

I know, what a sell-out. But it comes down to what I've said before, about picking yr battles and managing your stress levels.

Bear in mind that, by the point I published that post, I'd been running it over in my head for a couple of weeks - not really very good Fatigue Management, or a very good advertisement for CBT. Needless to say, my therapist wasn't very impressed with me.

Yes, I could have got involved further but would I have altered the opinions of the two guys involved? Or would I have just become another MOANING DIS-BO who complains while abusing parking along with all our other wonderful "perks"?

And anyway, I'd got it off my chest by sharing it on here with you. Thanks for listening.

Sorry that I wussed out, as opposed to STICKING IT TO THE NORMALS. I promise that - when it's a fight worth fighting - I won't bend so readily.

Hey - who wants to know which UK performing arts centre employs one of these jokers in a fairly senior role?

What??! I never said I was big OR clever, did I?

once more unto the breach..?

So I eventually received a response to my LinkedIn fury from the other week.

Actually, I got a response over a week ago - since then I've been slowly chewing over my options.

First up, I got this response who from the guy that prompted my initial message (hereafter known as Mr Reasonable):

Fair enough I thought (but I don't really get why this comment gets 'thumbs' - what gives? No 'thumb-love' for the righteously-peeved disabled person?)

Anyway, a couple of minutes later, this appeared:

Gaah! Just When I Thought I Was Out, They Pull Me Back In!

So this is where we are – I’m weighing up whether I really need to get myself embroiled in this.

Below is the response that I would send if YOU, DEAR READER deem this to be a sensible use of my time:

Matthew - yes that sounds reasonable.

But as we're all – in one way or another – working in Customer-facing environments, and as some of us may also be publicly-funded, my issue was with the language you used in this group - which implied an attitude and a lack of awareness that was unfortunately mirrored in Roger's subsequent comment.

OK

I know this is a closed forum but (ta-daah!) I’m a disabled Marketing Professional and I'M reading it so there's at least one of us.

It took me a long time to get up the courage to use my disabled parking permit and i do get the odd dirty look when i park in a disabled bay. I’m not a wheelchair user yet and on my good days I can pass for 'normal'.

People’s conditions can fluctuate - I know that mine does. Also DISABILITY does not automatically mean WHEELCHAIR USER.

However, I am entitled to use my parking pass without being judged or (God forbid) being abused if i walk into a building normally after parking.

If someone holds a lift for me, I’ll try to get to it as quickly as possible - that's just being polite, isn't it? Should I hobble slowly from my Blue Badge space (ideally using my walking stick for added effect) so people don't assume that I’m abusing the system?

Or should people:

a) Give me the benefit of the doubt in a 'there but for the grace of God' kind-of way
or
b) Mind their own business

I know this is wildly 'off-topic' for this group. BUT we should all be careful about the language that we use, even in non-public environments.

So what do you think should I publish this comment? Or should I let it alone?

benefits and MS | Multiple Sclerosis Society UK

MS Society awareness talk: benefits and MS | Multiple Sclerosis Society UK

This is another talk we're going to be at - according to the website, it wil feature, "An overview of disability benefits including Disability Living Allowance/ Personal Independence Payment, and Employment and Support Allowance".

Incidentally, two days after my LinkedIn rant, not one comment on the original thread!

Crazy - these people work in the relam of Customer Relationship Management! They should really have the balls to respond, don't you think?

i love the smell of righteous fury in the morning

Always nice to start the day off with a rant!

I'm fairly active on most social networks, one which I don't necessarily see that much of a point to is LinkedIn - have I totally got this wrong but isn't this basically just Facebook-for-career-minded-adults?

Anyway, I'm in a number of groups that are relevant to my work - one of them, which sounds as dull as ARSES, is a closed-group called Thinkaboutpricing.

A DISCLAIMER: the guy running this is Tim Baker, who is a bit of a god in the UK Arts scene - I've worked with him occasionally over the years.

Earlier today, I picked up on a thread which was responding to an article in The Guardian about the concept of "Paid-for Queuing" - which is surely the only outcome from tickets for high-demand events only being available on the day of a performance, and which opens up all kinds of issues as far as accessibility is concerned.

One comment went thus:

I immediately got on my high-horse - I think it was the jokey little "funny that" comment at the end, which is a particularly pernicious kind of disabled-person bashing, is it not?

HERE COME THE PAIN:

Did I overreact? I don't think I did.

gaucho

One of the many handouts we got at the Working With MS day the other week was one called Shrinking The Monster. Here's the description from the MS Society Website:

Written by Jo Johnson, a neuro-psychologist, this workbook can help you recognise, name and tame the ‘MS creature’ who takes up residence, uninvited. This way of thinking about your MS doesn’t suit everybody, but many people who have used this approach seem to find the idea of shrinking the monster increases their feeling of control. Drawing on cognitive behavioural therapy and narrative therapy, Shrinking the monster tackles serious, personal issues, but can be used and discussed with the whole family including young children.

Now I'll be honest (and I'm speaking as someone who's a bit of a newbie-convert to CBT), when I started looking at this I didn't think it was for me.

But when Emma looked through it, she got a lot out of it. Plus she named my monster: Gaucho.

This comes from my unholy interest in and fondness for the smooth jazz-rock stylings of Steely Dan. I'm not proud, I'm a man of a certain age.

Please Note - I've never had anytime for so-called 'Guilty Pleasures'. To my mind, you either like something or you don't. End of.

Emma thought the lyrics of their song Gaucho summed up the feeling that MS is a slimy, unwanted presence in our life - something ugly and creeping that is always there, skulking in the background:

Who is the gaucho amigo
Why is he standing
In your spangled leather poncho
With the studs that match your eyes
Bodacious cowboys
Such as your friend
Will never be welcome here...

I quite like this. Especially the fact that this is one of my absolute favourite Steely Dan tracks.

Talk about putting a positive spin on my condition!

For the last week I have been living alone. Emma and Evie were offered a free holiday, and I thought that I'd taken a lot of holiday in August. So off they went.

It's been cool to spend time catching up with friends but I'm very much looking forward to seeing my girls!