Wednesday, 15 January 2014

Why is trying to be 'Normal' so exhausting?

I've seen this topic mentioned several times recently and it made me think.

Attempting to be normal is exhausting. It really is. Frustrating too - because you never succeed. I've been there, I know.

I remember a conversation at Uni about haircuts. One lad's Mum had always cut his hair when he was a child, the other had always gone to a barber. Both found the other's 'normal' exceptionally
weird, and a highly entertaining conversation ensued. I've never forgotten it - because it made me realise that 'normal' was a pretty useless concept, and somewhat deluded.

But it didn't change the fact that trying to be a 'normal' young woman (work, socialise in the way I think everyone else does, study, feel guilty for not managing it all etc) was automatic. And as I became disabled my life became even more distant from my view of 'normal' and I fought this, trying to force myself to sit at my office desk for long enough, to behave 'like everyone else' when I could be seen - and crashing out entirely the moment I was alone.

I didn't actively choose to do this - it just happened by default. Attempting to live the life I thought I should have rather than the life I actually had.

But now, years down the line, I know better.

I realised what I was doing. A 5 week hospital stay with staff regularly telling you off (in the nicest possible ways) for being ridiculous isn't exactly a subtle hint.

So now I don't try and be normal, I try and be differently normal.

By that I mean I am learning what my body likes and doesn't like. How it copes with things. And it turns out, I am really quite different from many people:

  • I can't function in warm environments
  • lying down on park benches is essential in order to enjoy a day out
  • I can't eat chocolate
  • I can sit with my limbs in extremely obscure positions
  • I'm 31 and medically retired
  • I run a business based on stickmen - but only when I feel up to it.

But despite all my differences, I am also totally and utterly normal:
I go through life using the skills that I have, learning new ones where I can, and getting assistance where I need it. I bring my uniqueness, the same as everyone else does, and it makes for a richer life. Sometimes I give, sometimes I receive. [Note to self: never underestimate the power of giving a smile or positive comment. They are some of the most influential things you have experienced, so never despise your ability to give the same to others.]

Now I don't make my lifestyle on my personal delusion of "other people's normal" I live it by my normal, basing decisions on my capabilities. And in doing so I didn't get the fallout of people thinking I'm weird that I expected.

Instead I found a differently normal, rich and fulfilling life.

Thursday, 9 January 2014


Success is a funny old thing.

You make plans, and then something happens and you can't follow them, so your brain tells you you failed.

Yesterday was one of those days. Body strop meant I didn't even get my basic physio done and most of the day was spent half awake.

However, take a step back and think:

I put toothpaste on my toothbrush and soap on my hands.

I put the teabag in my mug and the laundry soap in the washing machine.

I put dinner in my mouth - which I successfully chewed and swallowed.

I used heat, relaxation and distraction to help manage my pain.

I read some things on face book and wrote a few relatively coherent comments.

I successfully spent periods of time hibernating from the world.

I changed channels on the TV, and I watched a DVD too - successfully operating all the necessary technical kit.

And best of all, I got through it in a way that means to day is a better day.

There was a lot I couldn't do, but that doesn't take away these truths. I didn't do a single thing from my ToDo list, but I sure was successful all the same!

Friday, 3 January 2014

Surviving winter with heat intolerance.

But surely winter is fine when you are heat intolerance - winter is cold, right?


And then again, no.

Outside is cold, but inside people put the heating on!

And when outside is too cold for T-shirts, how do I wrap up enough to be avoid hypothermia, but not enough to collapse?

Some things I have learnt:

Always take the cooling vest when visiting people/restaurants and the like. That way the cosy atmosphere won't floor me.

My torso is the most important thing to keep cool. Never wear a gilet.

Arm Warmers are the best invention ever. At home I wear them instead of a jumper [sweater]. When outside I wear them with a light jacket or cape - so they make the sleeves into a winter coat, but don't overheat my body :D (we are, of course, talking about English winter here. I am not suggesting you venture out in to artcic winter with only a light jacket!!)

And I got 2 new pairs in the post today. Mmmmmm, lovely.

There aren't many in the shops at the moment, they aren't fashionable - especially as I like long ones which go above the elbow (leg warmers work too, but they aren't widely available here either), but fear not, there's at least one good shop on - and although I had to be patient as they came from Poland, it was worth it.

So I sit here in my cool office: in jeans and T-shirt, light scarf and arm warmers.

Life is good.