Saturday, 17 February 2018

The importance of slowing down.

Something I've realised recently is that I often do things at speed.

I don't mean I run - but I often rush. Or even make the movements within the task I'm doing very fast.

And it's not just big things, but even little things like reaching for a cup.

I can go from resting to active in a split second.

I think it's a subconscious "I've decided to do it, so I'll get it done. Now."

But whatever the reason, my body doesn't like it, and it's really kinda unnecessary - so I've decided to put effort in to slowing down.

I think, for me, the effect is a combination things.

My POTS is very negatively affected by adrenaline. If I get a kick of adrenaline, if I'm lucky I kinda feel OK for a bit but later I crash out. Other times I might go a shaky and floppy and feel awful straight away for a bit. And sudden changes can put me into 'fight or flight' adrenaline mode.

Sudden changes of posture or speed or going still to active also don't give my autonomic system time to adjust properly - which of course also annoys my POTS.

In addition, because of my hypermobility syndrome, I injure myself less and am more stable when I move more slowly, and with an awareness of my body instead of just hurling myself at a task and hoping for the best.

Writing it on here makes it sound...well....pretty obvious. But like most things, it's kinda only obvious once I've realised it!

So here's to taking a slower pace, with a view to improving fatigue and injury management.




Saturday, 3 February 2018

Disability, 'ought to' and decisions.

Today I said I'd do some gardening with my Mum.

So I ought to do it.

I also ought to do the laundry as it's piling up.

And I ought to have a shower.

The list goes on.

But when I got out of bed I found I was weak and wobbly with fatigue. Not 'feeling tired' but being physically too tired to actually make muscles do what they need to do. So a simple 'sit to stand' which I can usually do with ease has become a significant, wobbly, challenge. If I'm gentle with myself it will pass - lots of rest and gentle movement.

So I made a choice.

There is no 'ought'. Only decisions.

And I have decided to do what will be best in the long run - what will enable me to be most healthy, and to get most done in the long run.

I can choose whether to do the gardening or not.

I would love to do it. I was really looking forward to it. But I need to recover first. If I go, my fatigue will massively increase and recovery will take a lot longer, I 'll be too fatigued to actually help much, and there's a very high chance I'll injure myself.

So I have chosen not to go. I've messaged Mum to let her know. She's fine with that, and hopefully we'll rearrange some time.

Laundry? That can wait. There are still clothes in my wardrobe.

Shower? I'll see how things go.

Because 'ought to' clouds my judgement. It's so often based on other people's (or even my own) unrealistic expectations.

Of course, sometimes 'ought to' might seem a good thing.

Today I really ought to pace myself, and recharge.

But if I pace just because I 'ought to' my day becomes a drag. A burden of having to do things - and having to not do things that I really want to do.

So I still have no space for 'ought to' to rule my life. It can flag up where decisions need to be made, but then I can choose. I ought to pace - but what do I choose to do?

Yes, I choose to pace today.

So I will. Because I have decided to.

And that is empowering and positive.

That simple decision means today isn't about being restricted by obligations, but about being empowered and proactively living well.

Because I have made that choice.

Keyring card with an exhausted looking stickman, saying "Sometimes I need to push myself to do more and other times I need to recharge. Right now I need to recharge. Don't worry. I am looking after myself and will be ready to face the world again soon."

Thursday, 1 February 2018

"Silent Witness" BBC Drama, disability, and my reaction.

The latest episodes of "Silent Witness" made compelling watching.
At time of writing it is available on BBC iplayer. Episode titled "One Day" (it is in two parts).

A story that was heartbreaking, but very well told.

I've tried to avoid spoilers here, but I do a reference something that happens to Clarissa - because it's important.

(This post might need a trigger warning for ableism. The program should contain TW for extreme disability abuse and rape - but I don't discuss either of them here)

For me, parts of it resonated. Resonated deeply in a way that I've never experienced with something I've watched on screen before. They were little moments that were such real parts of life with disability that it took my breath away.

I looked into the eyes of an actor, and saw my own fears and experiences.

No, no-one has ever tried to kill me - but there were two moments while watching Liz Carr as Clarissa which were particularly real for me. Too real.

One may seem insignificant.

The team were sat round having a discussion about the case. One chap had the attitude that it wasn't such a big deal as the people affected were disabled. He couldn't see anything remotely amiss with his attitude. He was completely unaware of his prejudice - and equally completely clinging to it. Clarissa was sat there. Tense. Then she caught the eye of a colleague, shook her head, mouthed 'I can't' to a supportive colleague, and left.

I've done that.

I've done that.

I was in a meeting where key people were discussing access issues - which had been rumbling along for ages. I'd tried everything I could to get one particular person to see me as a person making sensible suggestions, but all they could see was someone disabled, that it wasn't worth going to any effort or inconvenience for. Was I worth the hassle? No. Literally. Saying "We can't do that just for her". Her sentiments echoing closely the words in 'Silent Witness' - "We'll get the appropriate amount of resources on this." with the clear indication that 'appropriate' meant minimal.

During my meeting, I reached that point. I couldn't speak. Every fibre of my being wanted to scream my humanity, my intrinsic value as a person. But I'd already tried everything I could think of, and I'd watched others try without success too. The weight of words and emotions and injustice choked me. I had to escape. I had to breathe. I ....can't put it into words. If you want to know what it felt like, watch that episode. (a bit over half way through part 2). Watch Clarissa's face. The abrupt departure trying to remain dignified and professional while your internal world feels like it's teetering on the brink of collapse or explosion.

I've never seen it happen to someone else before.

And when I did, I didn't see an actor. I saw myself. In a situation all too real. I actually had to re-watch that section to check I'd not imagined it. And I doubt I'm alone in relating so strongly to a scene of such stubborn and total minded conviction that disability is inferior and disabled people are a burden.

The second bit that got me was when someone unhooks Clarissa's controls and wheels her down the corridor while she calls out for help. And no-one takes a blind bit of notice.

Now, I will make it clear that no-one has ever tried to kidnap or kill me. And lets face it, such moments of danger and drama are part and parcel of all crime dramas. And it wasn't when Clarissa was actually in danger that got me - it was that walk down the corridor.

Why?

Because I am wheelchair user.

As a wheelchair user, strangers periodically take control of my chair without permission - pushing me in directions I am physically powerless to change or stop, sometimes having ignored my explicit requests not to.

This has always been incredibly scary. A fear deep routed. Subconscious. Some recognition of danger that my conscious mind hadn't processed.

I watched Clarissa being pushed down the corridor, and I knew.

I heard her clearly stated wishes ignored simply because she was disabled, and I knew.

I saw another person physically take complete control of where she was going, with no more regard for her wishes or humanity than if she were a potato, and I knew.

I knew.

Because every time I'm pushed without warning, or without my permission, by a stranger, especially when I've specifically asked them not to, there is a part of me that fears my experience will echo Clarissa's. And what if Jack doesn't arrive in time for me?

And it is terrifying.

But they meant well, surely that counts for something?

Not really. No.

Someone moving a sack of potatoes to a 'more appropriate storage location'  is also well intentioned. Pushing me without permission (in any but the most exceptional of situations - like being about to be hit by a falling meteorite) involves the same amount of regard and respect for my life and my choices as you do a potato. And I am not a potato. I am a person.

All it takes to alleviate this fear is the knowledge that the person with me is listening to me, respecting me, and responding appropriately. The knowledge that they see me as a person, who's life is important and choices valid.

Such a small difference - and yet so significant.