Tuesday, 22 August 2017

A day of pacing

The other day, as I filled in my pacing fridge magnets (available here) I thought I'd blog the way my schedule changed. I use my magnets on a board like this A3 magnetic whiteboard. but there are various ones available.

Below is the plan I put together the evening before. Actually it's the second attempt, because the first attempt included a morning full of red and orange. Which meant I realised it was too much before I'd finished it!


I like doing the first schedule the evening before, because I can usually tell roughly what 'shape' my symptoms will be the next day, and I go to sleep knowing that tomorrow is 'under control' as I wake up to a routine/schedule - and I don't have to schedule from scratch, think clearly and prioritise first thing in the morning!

How did I grade the activities? - By looking at what I currently find most exhausting - which is sitting still and concentrating. This is probably related to my POTS, but also sitting still aggravates my pain levels from my HSD too. On days like that, short tasks that involve a bit of moving about and minimal concentration are actually easier (long tasks that are active are a different matter).

At 10:00am I was on track. I'd achieved stuff, but not built up too many symptoms.

By 10:30 I'd realised the 'Challenging' - 'buffer' (writing my main social media posts for the next week) would take a lot longer, so I decided there were a few things I could move to another day - the pile of sideways activities at the bottom of my board - and I rearranged a few other tasks to give myself more time.

I then realised that the sunshine combined with a cool breeze meant it would be lovely to get outside, so I swapped colouring for 'easy gardening'. What is this? It's using my wheelchair to get outside, then sitting on the patio and pulling up the larger (easy-grip) weeds of a type that flourish in my garden and are REALLY easy to pull up by the roots. It gets me moving, takes no brain power, means I can quickly see results, without risking significant injury.

And instead of trying to schedule all my social media posts in one go (a 2 hour block of solid challenging brainpower which would wipe me out for the day), I'd do 30 mins, my timer would go off, I'd do a bit of easy gardening, then return for a bit more brain-work.

By lunchtime I was still on track with my adapted schedule and loving it. Yes, there were tasks I'd had to move to the 'another day' pile - but I didn't need to worry, because I knew they weren't essential today, and could be left for another day. Having them still written down also means I don't worry I will forget them.

Of course, other bits and bobs pop up. An unexpected (and long) work phone call etc. But by the end of the day, my schedule had been tweaked a bit more and looked like this. I'd achieved LOADS - but without feeling overwhelmed. And the things that hadn't got done were waiting for tomorrow.


On a different day, classifications of activities will be different. On a flop-day, reading is challenging - and writing coherent stuff would be impossible. Laundry (a short, minimum brain task - washer-dryer means no needing to hang wet washing out) was easy for today, another day this might be challenging. Similarly, on a bad day, basic self care items, like brushing teeth, getting dressed etc will appear on my magnets. But the concept remains the same - mix up the stuff that's mentally hard, physically hard, mentally easy and physically easy - making sure you move about frequently at what ever level works for you. Resting one part of you doesn't mean you have to lie down - just doing something different can be enough (e.g. doing something brain-easy after something brain-challenging. Or which uses legs instead of arms). I still had a few horizontal rest breaks, but walking to the kitchen and making a cup of tea after concentrating for half an hour is, for me, an excellent pacing tool. (on a bad day, 'move about' might mean lie down flat and gently stretch/move different parts of me - on a good day it might mean something a lot more energetic.)

I don't use the magnets every day, but whenever I start to feel my to-do list weighing down on me, or I've had a bit of a 'splat day' and am trying to get back into normal life, or my motivation is slipping, I get them out. Because they turn a mountain of tasks into manageable sections, help me keep the balance between challenging myself and respecting my limits, and I see my progress rather than only seeing the pile of tasks that still remain.  The magnets aren't there to dictate my next activity, but to help me make constructive decisions throughout the day. I'd look at the board to see what my next task was - but also to see if I thought it was still the right thing given current symptoms.

Besides, who doesn't feel better to finish the day with a happily coloured schedule that shows them everything they've achieved?

Tuesday, 8 August 2017

Are you an autism/disability ally?

I first encountered the terms "Autism Ally" and "Disability Ally" relatively recently. Where people who are not autistic/disabled use the term 'ally' to show that they are supportive of autistic/disabled people.

For some reason I didn't like the term. It felt unsettling. Like there was something slightly...wrong? - but I couldn't put my finger on it. So I kept quiet, figuring that at some point it would make sense.

Then in response to my "Is everyone a little bit autistic" blog post, an autistic person tweeted this:
My reaction was "Yay! I did something right!"

Which made me think - why did I react so negatively to the same term before?

Then I realised.

When someone with a condition that you don't have calls you an ally - it's like them saying "Thank you, you have done something helpful, I feel respected, listened to, and supported by you."

But if I were to say "I am an autism ally" - there is no verification.  No real world confirmation that my words and actions are genuinely supportive. Clearly I want to be an ally. But hand-on-heart well intended actions and words don't always equate to actually being an ally.

I know this, because I'm a wheelchair user and I often meet people wanting to show that they support me, accept me etc - who might consider themselves my allies. But very often, in reality, they aren't. They make a fuss when no fuss is needed, they barge past me to open doors I am perfectly capable of opening, they heap fawning praise on me for doing things that are totally normal (drinking a cup of tea, buying a T-shirt etc.), they tell me that they totally understand how terrible my life must be, or they get offended when I politely turn down an offer of assistance*. People react to me based on false assumptions and don't take the time to check whether those pre-conceived ideas are accurate or applicable. All of these interactions make my life harder - meaning I use precious energy fending off their advances instead of being given the freedom to get on with my life. If one of these people said to me they were a "disability ally" and would speak up for me, I would, quite frankly, feel moderately terrified about what misinformation they might be spreading - and how much more difficult they would make my life in the immediate future.

Their intention was to be an ally, but it came out wrong. They weren't my allies in reality. And they couldn't be my allies because they did not listen or take the time to find out what I needed before swanning in to my life, full of good intentions.

When someone claims to be speaking up or acting on my behalf, but actually aren't, and hand out misinformation instead, it's scary. Really scary.

The thought of doing this to someone else - stating that I speak on their behalf and then handing out misinformation, or stating that I support them and then doing really unhelpful things, is.....something I don't have words for, but something I really don't want to do EVER.

Now I know that I sometimes screw up with how to support/help other people with disabilities. We all do - and as I'm learning to be an ally, that's OK. Learners make mistakes, we learn from them, we do our best not to repeat that same mistake.

So I won't be saying "I am an autism ally" -because it may not be true - however much I want it to be true. Yes, I wrote a blog post that one person considered worthy of 'ally-ness' - but was my next action genuinely supportive too? The only people who can confirm or deny my ally-ship that are the people who's ally I am trying to be. Not me.

But what I can say is that I'm learning to be an ally. Sometimes I may mess up. Get things wrong. But then I will listen and do my best to learn and not repeat the same mistake again.

And I intend to keep learning for the rest of my life, because I think I can be far more supportive to others by constantly learning how to be a better ally, than I will be if I consider myself to have achieved 'ally-ship' already, and stop learning.

 (*Casually offering support if I look like I'm struggling is great - but refusing to listen to a 'no thank you' or trying to insist I accept help that I don't need is not helpful, nor is it respectful).

Note: I know not everyone will share this view, and that is fine - everyone is free to use the terms they feel appropriate. This blog is simply written from my perspective here and now - and it has allowed me to process and understand why I was so uncomfortable with the 'ally' concept.