Friday, 20 May 2016

Proprioception and dance discoveries.

People with connective tissue disorders like Ehlers Danlos Syndrome often have poor proprioception - the body's intrinsic awareness of itself; knowing where your hand is even if you aren't looking at it.

Poor proprioception results in failing the doorframe slalom and much general 'clumsiness'.

Despite my EDS, I always knew my proprioception to be unremarkable. Doctors said my body awareness was fine, and I'd be able to tell if it wasn't...wouldn't I?

During a conversation in my 20s I commented "You know that thing where you lie down and forget where your legs are until you move them?.." 

It turned out they didn't. No-one else in the group 'lost' their limbs when relaxed and not looking at them. No-one else had a childhood game of "guess where you left your legs without looking at them and then move them to see if you were right".

It also seems that when a Dr tells you to close your eyes, then moves your leg and asks what angle your knee is bent at, most people just answer by 'knowing' and don't use the logic of "this part of the leg feels like it's this angle because of this sensation from clothes/skin folds/muscle tension, that part of the leg feels like it's at that angle, so the reality is probably half way between the two". 

So I had to accept that my proprioception, though present, is pretty rubbish.

Not that it changed much. Other than I now know why I find physical pressure so... grounding?.. comforting?... home? (it's hard to find the right word for the certainty of position that it provides - and the resulting mental and physical relaxation). My normal was still my normal, and it didn't really matter if other people were a bit weird compared to me.

But sometimes something happens that really brings my proprioception issues into focus. Like an exercise in dance last week:

In partners, Person A shuts their eyes and dances while leading person B. Person B, with eyes open is led but also keeps person A safe - preventing collisions etc. 

This is apparently aimed at exploring your body's proprioception - 'listening' to a sense that we don't often consciously take notice of.

Everyone else loved it - found it initially strange, but once they'd learned to trust that person B would keep them safe, it was really freeing.

But I couldn't hack it. It was horrendous. I stopped after a few seconds. Even the memory of it makes me want to curl up in a ball. Yurk.

I'm not sure there are words to describe it, but I shall try:

I sat in my chair and my partner had a hand on my shoulder. 

Being in a wheelchair you cannot gauge distance. A small push on a smooth floor can travel centimeters or meters. and you have nothing to give you any concept of distance traveled.

The hand on my shoulder moved with me - it wasn't a reference point, it gave me no usable information. I had no idea where I was. I don't just mean I didn't know where in the room I was - I couldn't even tell I was in a room. Other people spoke of having a sensation of where they were - even if they weren't right. The picture in my head was blackness. Total nothingness and a desperation to 'find' something that wasn't nothing. I wanted a solid reference point. I gripped my wheels, and made a few tentative pushes. Each time I let go of the wheels the sensation of being lost was overwhelming (or possibly the lack of the sensation of being 'here'). I wanted to cling to my chair so I could feel...real. My brain going into overdrive in it's attempts to get a handle on where my body was. It is probably the closest I've ever been to having a panic attack. The only time I felt 'connected' was when I was holding my wheels still. Gripping them so tightly it hurt and leaning forward so I could feel my torso against my legs.

I opened my eyes.

I wasn't using and appreciating a sense we often don't notice, I was discovering I didn't have enough of that sense to be able to function. And I hadn't expected it. Yes I knew in an academic kind of way that my proprioception was off - but that's not the same as finding yourself totally incapacitated by a lack of it.

So instead of continuing the exercise we sat and discussed the experience. 

I thought if I tried something similar sat on the floor instead of the chair, I'd be OK - maybe it was because the wheelchair meant I had no connection to the security of the floor - so the next 'eye's shut' exercise I tried lying down (it was fine) and then moved to sitting up, decided it was a bad idea (ARGH WHERE AM I?) and returned to maximum floor contact again.

In hindsight I should probably have done something to counteract the sensory deprivation that had come close to totally overwhelming me. Given myself some really strong, solid, proprioceptive feedback. Perhaps got a bear-hug from someone. or squashed myself into a corner for a bit, or hugged something heavy. Like the corner of the wall. Rocking can help if my lack of propriocetion is just being a bit annoying, but not when it's reached "HELP!! I CAN:T FIND ME!!" stage. (...OK, so my sense of proprioception probably doesn't change, but my ability to use the layers of coping strategies that I rely on certainly does!)

Either way, I shall not be dancing with my eyes closed for the forseeable future. Not unless I will be getting a lot of feedback from external pressure to compensate for my dodgy proprioception!

[Note: Poor proprioception is not limited to EDS. I believe it is also common in autism and sensory processing disorder. I wonder if my experience of poor proprioception and sensory seeking to counteract it is similar to that of some people on the spectrum.]

Saturday, 14 May 2016

Anxiety, depression, cards and teamwork

Over the past month I've had the privilege of working with a group of college students who live with anxiety and/or depression, to create keyring cards that would help them (and probably many other people too). Not based on what experts have written, but based on their experiences of everyday life.

There's been much drafting and re-drafting, and help from a few other consultees too - including an epic facebook chat with Imi, creator of 'The Upside Down Chronicles'.

Clearly every card will not be suitable for every individual with mental health challenges, but that is the beauty of the keyring cards: you choose to use the ones that work for you.

And now the cards are here.

Some specific to mental health, but many are applicable to many situations and conditions.

Explaining the basics so friends and family can understand a bit better.

Making asking for support a little easier

 Asking for a hug.

And anyone who knows Imi will not be surprised that she is behind this one...

A huge thank you to everyone who made this possible, but especially to Imi for all her help with editing and insights into mental health conditions, and to my team of college students, without whom none of this would have been possible. I hope you are proud of yourselves, because I think there will be many people now and in the future, who will be helped by your work.

Wednesday, 11 May 2016

Can fatigue affect speech?

In my experience: Yes.

I have fatigue related to Ehlers-Danlos syndrome (hypermobility type) and Postural Orthostatic Tachycardia Syndrome (EDS and POTS)

When fatigued, my speech can be affected in the following ways:
1. Reduced ability to form coherent sentences
2, Reduced ability to use the correct word
3. Reduced ability to form/pronounce words

They are such common occurrences that I have various keyring cards to explain them - which is a great help in reducing the awkwardness!

But for those who haven't lived with these, here's a bit more detail:

1, Reduced ability to find the correct word.
"Could you fetch my red bag from the hallway"
"could you fetch my bath...bed....thing...[attempt to mime 'bag']..BAG...from[point in right direction] there."

Incorrect words usually have the same starting letter as, or rhyme with the word I want, are something from an earlier conversation or have a linked meaning.

If the wrong word is stuck in my head, it is often quicker to reel off incorrect ones until I find the right one because if I stop myself, then all I can think is, for example ", not, it's still not bed!"

Moments of this are a daily normal, but frequency increases with fatigue. My undiagnosed, probably-bendy Dad was the same when tired. "Do you want a banana, because I'm putting the kettle on." was considered perfectly normal tired-Dad-speak. (banana = tea, in case you were wondering.)

2. Reduced ability to form sentences:
Instead I fire off key words in no particular order, in the hope that my meaning will become clear.

"Could you fetch my red bag from the hallway"
"Bag. Red. Hall. Bring?"

Attempts to turn it into a sentence results in silence - as if the concentration required to think of the proper phrase steals the concentration required to actually say the words.

At this point I will usually stop talking and use gestures, cards or written words. Interestingly I can sometimes still write sentences even though I can't speak them.

3. Reduced ability to form/pronounce words

At this point I am what friends, family and work colleagues term 'Drunk'. (Due to fatigue, not alcohol or illegal drugs!). The finely tuned coordination that speech uses simply doesn't happen - my words can become indistinct, or certain letter combinations too tricky to manage.
When it is mild I might be able to concentrate hard, put more effort in and mask the difficulty - making me sound temporarily posh and slightly stilted - and when I stop concentrating it reverts to..well...drunk!

All of these worsen with fatigue - and are some of my warning signals that I need to pace: change activity or rest, depending on the situation.

I can't give you in-depth medical reasons for all of these, although I suspect that the laxity EDS causes, and the temporarily reduced blood flow to the brain due to POTS both play a part in the fatigue-related symptoms I experience.

If you experience the same, you are not alone!

And if you don't...please accept that sometimes speech isn't a practical option for me, so conversations may need to be delayed, or my part carried out via written words.

(Note: keyring cards available from )

Thursday, 21 April 2016

The right to use the Accessible Loo

Yesterday, at a hotel, I needed the loo. The disabled toilet was locked. I waited about 30 seconds, but hadn't heard any sound from inside.

I have previously waited for 20 minutes outside an accessible loo only to discover that staff had locked it, but not put an 'out of order sign' up - not an experience I want to repeat. I also worry that someone could have collapsed in there.

So I knocked.

"I'll just be a moment!"

Good. Someone was in there, I wasn't waiting in vain. My bladder wasn't at 'exploding' point, so all was well.

The door opened and a tall woman, with dark hair came out.

"I'm sorry." She said. "I'm so sorry, but you see I've had my spine fused, so I need the grab rails to be able to stand up again, I'm so sorry!"

My heart broke a little inside.

How many stares and how many harsh judgments had she faced to make that quick explanation be the automatic response to a friendly smile? That she felt she should apologise for using the very facilities she is entitled to use?

How many times had people arrogantly questioned her - or even been verbally abusive because she used facilities designed for her and necessary for her health?

"It's OK" I said. "You are supposed to use it!"

And I gave one of these key fobs (available from

Her face filled with relief, and after a brief chat we went our separate ways.

Don't get me wrong, I love my job.

But sometimes I really wish it wasn't needed.

Friday, 15 April 2016

Is your reassurance reassuring?

There are many situations where reassurance might be needed. I'm going to write about one of mine - but I think the basic principle applies to many scenarios.

As someone with disabilities, most outings have many 'what if's that are different to the concerns a non-disabled person might have.

What if I can't cope? What if it's not accessible? What if it's too noisy? What if it's too hot? What if I get injured? What if someone has a go at me for parking in a disabled bay? What if I have a medical emergency? What if I do something 'normal for me' - or even necessary to manage my conditions, and people get in a flap/try and stop me doing it?

Friends, family - and even strangers - often want to be supportive. The most common phrase is: "Don't worry, I'm sure it will be fine."

After all, accessibility is a legal requirement so that shouldn't be a problem. And you want to make me feel better about the trip.

But think about it: Do you really understand all my needs and differences, and have an equally detailed knowledge and of everything that might present challenges, and suitable solutions to each one from the moment I leave my home until I return to it again? Have you inspected the accessible loos and checked the temperature control in the rooms? Do you realise how many places that call themselves 'accessible' have steps to the bathroom or even steps to the entrance?

Are you aware of all the lateral thinking and creative problem solving that I employ to make every-day tasks doable? Do you really understand how much more mental energy and strategic planning goes into a trip?

I live with my condition 24/7, and even I can't guarantee that any trip or event will be 'fine'. So your well meant reassurance does not give me confidence or security. It makes me feel that my concerns are not valid, and that my being able to actually get there or be involved is not important to you. It leaves me feeling alone and unsupported. 

What is reassuring is a response that shows you have
a) listened, and
b) are interested in finding a solution.

Perhaps checking a website or calling a venue for more access information or asking them to send photographs of possible barriers so I am prepared for them or can choose an alternative if it isn't suitable.
Or leaving enough time for a rest between activities and taking a blanket to lie on.
Or ensuring that we both have fully charged phones that are switched on.
Or taking certain emergency kit.
Or breaking a journey part way.
Or taking headphones to block out noise.
Or checking in advance where the accessible loos are.
Or agreeing that if you notice certain symptoms, you will suggest appropriate actions.

Many of these might be things I can come up with on my own, but it helps to have someone else in on the plan. If we have factored in time-outs, then I won't feel guilty about taking one. If you know I have a cool vest in case I overheat and you notice I am overheating, you can ask me if I want to put it on (because with symptoms that cause brain fog, remembering a solution is NOT easy!).

I need you to know some of my 'what if's, and associated solutions - otherwise you might unintentionally prevent me from doing something that I need to do, or you might also make a fuss about something that isn't an issue for me, or demand 'assistance' that is not helpful.

Even people who know me really well and who have listened to and acted upon many of my 'what if's before scare me when they say 'It will be fine' - because I don't know if they've forgotten to check a key point, or not realised a seemingly small detail which could be a game changer. I need to know that I won't turn up somewhere - only to be turned away due to accessibility failure - or at the very least I need to know that we have a back-up plan, so that if option 1 fails, it doesn't ruin our day.

Knowing that you know my 'what if' concerns and possible solutions leaves me feeling supported. It reassures me that we are on the same page and will be able to get through any issues that arise.

Instead of having to face issues alone because you didn't take the time to listen, I am part of a team, and that together we will make it work.

Wednesday, 13 April 2016

Stickmen: Breaking down barriers for all ages.

The simplicity and clarity of these unique keyring cards and other stickman products from Stickman Communications® create an effective solution to situations where the right words are difficult to find, people don’t seem to be listening, fail to grasp important points, or where the same information would otherwise have to be continuously repeated.

Why would someone who can speak need communication aids? Their creator, Hannah Ensor, says “When I am fatigued, I find noise and crowds overwhelming. But if I tell someone I can’t cope, they often either ask lots of questions (which make it worse) or they don’t understand. It’s horrible. I wanted to find a way to allow people around me to understand and react appropriately, but without making a fuss. The stickmen worked. They meant I could explain in a way people could instantly understand and relate to. They are a pocket full of confidence: If my symptoms kick off, I know I have the tools to deal with it.”

Available in over 100 different designs, these cards are applicable to a huge range of disabilities and symptoms including anxiety, autistic spectrum conditions, asthma, diabetes, dyspraxia, incontinence, fatigue, hidden disabilities, HMSs, mental health, pacing, pain, relaxation, seizures, tourettes, wheelchair use, and more.

See for the full range of products.

Wednesday, 6 April 2016

Do you see yourself as disabled?

The question makes no sense to me: 'Disabled' is a descriptor. Which to me equates to either you are disabled or you aren't. True, in some situations a disability will be relevant (for me, when choosing how to travel to the shops) and other situations it is not relevant at all (when deciding which flowers I like). Disabilities will vary in relevance, and often also in severity and effect over time.

So for me, the only possible answer is "Yes. Because I am."

I am disabled. Just as I am human. And brown haired. And English. And several hundred other descriptors covering everything from character to skills, from looks to likes and dislikes.

'People with disabilities'/'disabled people' demonstrate the same range of characteristics as 'humans' - the good, the bad and the ugly. Disability says nothing about these other characteristics. I don't shy away from using the descriptor 'human', so I don't shy away from the descriptor 'disabled' either.

If you do have a disability/condition that affects how you do things on a daily basis, and you find that your initial reaction is to say 'no, I don't see myself as disabled' - or to say how glad you are that friends helped you realise that using an aid/adaptation doesn't mean you're disabled...

Please pause.

And think.

Every time someone who has a disability says
"I don't see myself as disabled",
I don't hear
"I am not pitiable, I am a valuable member of the human race."
Which I suspect is what they might be trying to communicate.

Instead I hear
"I agree that disability is shameful and pitiable. People who are disabled can't be talented, funny, individual, intelligent, or valuable members of society. So I am carefully distancing myself from the really negative and shameful people who are disabled." 
True, the process of becoming disabled is often traumatic - and adjusting to new limits is challenging and can take time and tears - but take courage, 'different' can still be awesome.

My advice would be: try not hide from your disability in case it is viewed negatively, instead learn the skills to get on with your life, secure in the knowledge that 'disabled' is only one small practical descriptor in the marvelously unique bundle of characteristics that is you.