Friday 14 December 2012

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!

Saturday 8 December 2012

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)


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.


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!)