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.

Friday, 28 July 2017

The Status Squares are here!

Status Squares:

An innovative new tool to make invisible symptoms, visible.

We recently launched StatusSquares.


These wearable token units mean that needs and symptoms can be easily and effectively communicated, and as an individual’s status changes, they can be updated by flipping the token over, or swapping it for another token.

These simple units can help in so many different situations (at school, home, social event, medical appointment or work) and are relevant to many disabilities/conditions (fatigue, anxiety, autism, selective mutism, pain, depression - and a whole host of other conditions). 

Having a straight forward and effective way to show how you are, or what your needs are takes away the pressure of constantly having to explain or answer questions. A tool that allows you to show when you need time alone, or time to recharge and when you want company. 

In a school context, it allows teachers and parents to instantly see how the child is feeling/coping when they first arrive and put the appropriate support in place without the need to ask questions - especially as, when struggling, the effort of having to answer the questions can be enough to trigger a meltdown or worsening symptoms. 

They also allow children (and adults) with conditions involving pain or fatigue to communicate how they are without feeling they will be told off for 'complaining'.

And as your status changes throughout the day, the Status Square can be updated by flipping the token over, or swapping it for another token.
 
There are 2 main fastenings - a metal clip, or a sturdy badge reel with 40cm retractable cord and a belt clip, but they can also be used with lanyards, keyrings etc.

Made of medical grade plastic, with laminated vinyl latex stickers, the 'clip' versions are totally latex free.

We currently have 5 different double sided tokens, and the 2 different unit attachment options.

The Status Squares can be ordered here.

If you are interested in becoming a stockist, or placing a bulk order, please email us on admin@stickmancommunications.co.uk to discuss options.

Here's a clip of the squares in action:

Tuesday, 18 July 2017

Is everyone a 'little bit autistic'?

I have many friends who are autistic.

And I often hear people who are not autistic trying to show acceptance, and relate to an autistic person by saying things like "Yes, I'm a bit autistic too, because I don't like change/don't like loud noises/stim/[insert appropriate phrase here] too" or use the phrase "everyone is a bit autistic" to try and be inclusive.

Now here's the thing.
Loud noises make my spine cringe. If words are too loud I really struggle to understand what they mean. It's like I'm having to use so much energy up to cope with the loudness I can't focus on the meaning.
I have poor proprioception (I don't know where my body is in space when I'm relaxed). Pressure helps me know. So does movement. So when tired and trying to concentrate I may rock, or sit on my hands or on my feet, or wrap things tightly round my hands or fidget, or stretch repeatedly, or one of lots of other things that gives my brain enough input to stop having to work out where my limbs are so it can focus its fatigue-limited resources on more interesting things. Essentially: I stim.

Surely that makes me a bit autistic?

Actually, for me, they're part of my hypermobility syndrome.

I find it totally understandable that some autistic people stim, and it's something I can relate to, but I'm not autistic.
I wear ear plugs when I go to concerts, but I'm not autistic.

I am not on the autistic spectrum.

Because (as I understand it) the autistic spectrum isn't a spectrum from 'a little bit autistic' to 'very autistic'.

Everyone on the autistic spectrum is autistic. They have a different way of processing things to me (who is not autistic). The 'spectrum' part relates to individual variations within the autistic neurology (although there's probably a better way to word it than that). They each display different traits from multiple parts of the spectrum as part of their autism. For example an autistic person might avoid eye contact, or might make so much eye contact that the non-autistic feels uncomfortable. They might seek a certain sensory input or they might actively try to avoid it - thus making a broad spectrum of traits within the diagnosis of autism. Some traits might be mild or severe  (like obsessive tendencies, or level of verbal communication) but that doesn't make someone more autistic or less autistic. The autistic way of processing is there. It is a part of who they are.

Does my insight into living with poor proprioception mean I know what it's like to be autistic?
No.

Because we don't experience life according to separate symptoms - we experience it as a whole being. For example, I experience poor proprioception alongside my ability to pick up non-verbal signals and hints easily. That means I don't know exactly what it is like to have poor proprioception and a limited ability to process non-verbal signals and hints.

Of course I use the insight from my poor proprioception to help me understand similar traits in autism, but I also need to step back and recognise that I'm not autistic so there will be differences.

"Everyone is a bit autistic" doesn't recognise the differences. It doesn't leave space for differences.

And if there's one thing my disabilities have taught me, it's that I can only flourish when I (and those around me) accept my differences - because then I can learn to live well with my differences. And you can't accept what you don't recognise exists.

So when I want to show that I relate to part of an autistic person's experiences I try to approach it from "That makes sense - I have [insert relevant trait] which has some similarities so what you say sounds familiar - but obviously it's not the same so there's a lot I don't understand."

Recognise the similarities and common ground, but also leave open, respectful, welcoming space for difference.

Because we aren't all a little bit autistic, but we are all human.

Thursday, 29 June 2017

Discovering the OneLeg stool

While representing the Hypermobility Syndromes Association at the Foothealth conference 2017, I was intrigued to discover the Oneleg stool.
It looks a bit like a mushroom, is designed to let you move easily when sat low down, and logic says it can't be very comfortable. However, as someone who does a lot better if I fidget when sat down I thought I'd give it a try.

Amazingly, this seat built to wobble feels really quite stable. It tilts - but in a controlled way. It's kinda hard to describe. It is much more comfortable to sit on than my wobble cushion - and gives a great core workout. It's also fine to sit still on. But instinct says "Fidget!! It's funner!" (it wasn't only me thinking this - the professionals who tried it seemed equally impressed. And equally keen to make the most of its capacity for movement while sitting still.). The one thing I couldn't do was slouch. I tried various slouches and every time I tried, my muscles kicked in and turned the slouch into a controlled movement - so it's a great deterrent against unwittingly flopping to end of range while sitting working (which is important for us who are hypermobile).

Seeing as the HMSA stand was next door to the OneLeg, I borrowed one and spent most of the morning sat on it. And when I did my lecture in the afternoon I sat on one instead of sitting in my wheelchair. It really helped with POTS management too - as I could keep my lower body moving enough to help improve circulation, without having to stand (which takes too much energy to be able to talk at the same time).

However, it should be noted that if you wiggle lots, then you really work your core muscles - and my hips and ankles too! So I'd strongly recommend building up how long you permit yourself to sit on it. It turned out that 4 hours on day one was a bit much - but I reckon if I bought one I would soon build my tolerance (and strength!).

My preferred height was the 48 inch. I'm quite long legged. I'd recommend trying various heights before buying if possible.

I now have this firmly at the top of my 'things to get' list - it will make a great office chair, and a way to strengthen my core. And when I have one, I'll be bringing it to events whenever I can - because being able to exercise while sitting really does help with managing my hypermobility syndrome and POTS.

(And no, I haven't been paid to write this. I just thought some of my readers might find it useful. I suspect it would also help with conditions like ADHD ;) )

Thursday, 1 June 2017

Communicating positively about hidden disabilities?!?

I often hear how important it is to be positive.

The thing is, that there are times we need the people we're with to be aware of symptoms - like fatigue, pain, dizziness, brain fog or any of the other multitude of things that can affect us in various ways from day to day.

It's not like we can start saying "Oh hurrah, I can't do that because my brain has turned to mush".

And yet....

I've seen peoples eyes glaze over when I talk about my current symptoms. I have even found myself unconsciously switching off when people have given me too much negative information. Which, given that I know what living with these symptoms...well, it was a bit unexpected!

It's as if the human brain has an automatic 'off switch' when too much stuff perceived as "negative" info is given resulting in none of then information I tried to share actually being taken on board - and a LOT of attempts to 'jolly me along'. "You can do this" "You need to be more positive" and the like. Which, of course, don't help - because they haven't actually taken into account the symptoms or limitations I've tried to tell them about!

So it looks like a 'catch 22'. Communicating about the symptoms is 'negative' and doesn't help. Not communicating about the symptoms means people get frustrated, have unrealistic expectations and can't understand why I can't do things.

Over time I've found a few ways to communicate in a more positive way - while still being very grounded and real.

For example:
"I am really fatigued. Struggling to concentrate. And I really can't sit still for long because of pain."
This is true. But it is all 'negative' information, and will probably fail in terms of creating understanding about my reality. I can't tell you the psychology of why, it's just something I've observed many, many times.

Here are some alternatives I've developed over time:

Option 1: Acknowledge the cause (it helps people build up an understanding of cause and effect - so over time they realise that busy today = symptomatic and quiet tomorrow, and puts the symptom into a wider context of 'doing' something - which also helps reduce the 'jollying you along' reaction.)
"I had a lovely day yesterday - got to hang out with some of my nieces in the morning. Now the fatigue and pain have hit, and I really can't concentrate for long. But it was worth it."

Option 2: Include coping strategies (it helps stop people panicking that you are just sitting there worrying about pain/symptoms all your life)
"I am really fatigued. Struggling to concentrate. And I really can't sit still for long because of pain - so I'm doing little tasks only, and lots of stretches, and using my heat pack - which helps."

Option 3: Recognise achievements based on what was challenging for you. (again, this helps people start to understand your normal.)
"I'm horribly fatigued and can't concentrate for long today, but I've managed to have a shower - so I'm really pleased about that."

Option 4: Include a 'can' alongside a 'can't'. (this helps avoid the 'encouraging' attempts that try and insist we do something we know we can't - or can't without unacceptable consequences - and has the added bonus that it's good practice for finding solutions and things we can do.)
"I can't sit for long - I'm in too much pain. But I can manage 5 minutes at a time, so I've been doing short tasks - and then changing position - I've achieved far more than I thought I would!" (I still can't believe how effective this position changing and regular moving has been for my pelvis/lower back pain).

And try to finish the update on a positive - which I've just realised I did in all these examples!

These don't create telepathy, or resolve every situation, but they have helped me become better understood by the people around me.

I hope that they can help you too.

Saturday, 27 May 2017

Disability: Appropriate offers of help

Friends and family often struggle to know when to offer help. Especially when it comes to variable and hidden aspects of disability - such as fatigue, pain, brain fog, or depression.

To me, as a person living with some of these symptoms, it feels obvious.

If I'm doing okay and managing a task (even if I'm doing it differently) then it's pretty obvious I don't need help. Being repeatedly offered help (or worse, given help without being asked) when I'm so clearly okay is SO frustrating! It takes away my enjoyment in being able to do it, it takes away my independence, and it makes me feel worthless. Plus I waste precious energy fighting off the offers of help instead of using it to do what I'm actually trying to do!

If I'm struggling, trying to push through nearly unbearable pain, unable to think straight, close to tears - then quite clearly an offer of help would be appropriate. And when people don't offer, it is like the seriously don't care that I'm struggling. Totally selfish. Like my needs are just not important at all.

But here's the thing I forget:

They are 'hidden' symptoms.

The foggly eyes and lightening strikes of pain so obvious in stickman are not visible in human. They are obvious to me. They might be so obvious it's hard to see anything else. But they are hidden from someone looking at me.

So if we translated those two scenarios into what it looks like to others instead of what it feels like for me, we get 2 scenarios that look nearly identical - a person preparing food. But in one the other person gets their head bitten off for offering help, and in the other they get their head bitten off for NOT offering help! This can result in the other person feeling like they always get it wrong, that their help isn't wanted, that they are worthless, that nothing they do is good enough - etc.  Is it any wonder that they can get frustrated and demoralized and stop offering help?

Realising this has helped me a lot. 

You see, remembering that it's not automatically visible makes me realise I need to communicate how I'm doing in order to get offers of help that are more appropriate - and acceptable.

Communication involves both people being on the same page - so having a conversation about the symptoms (and need for help) being variable and not obvious might be a good start. Or writing a 'dear loved one' letter or similar (see my earlier blog on types of communication)

And then find ways of communicating 'in the moment' where help is needed (or not) that work for both of you. Codewords can be very useful ("out of spoons" "Level 9 zombie" etc.). 

Personally I like things that 'Make the invisible, visible' - like flashcards or wristbands.



The important thing is that together you come up with a way for the 'foggly eyes' of stickmen to be accurately conveyed in Human - working together towards a future where offers of help are appropriate and constructive instead of a cause of friction and distress.