Friday 31 January 2014

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?

Friday 17 January 2014

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.

Thursday 16 January 2014

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).

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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).