Monday, 19 January 2015

Exhibition planning!

It's official.

Im going to the 'Kidz in the middle' exhibition on the 19th March 2015 at the RICOH arena in Coventry.

My first major indoor disability exhibition.

I'm listed on the website and everything!

I went to the one in Reading as a visitor a while back and absolutely loved it. So now I'm starting to plan the stand and work out how to get the most out of the day.

I turned to google for advice -  'Top tips for exhibition stands' and the like.

But most of it was either stuff I'd already thought of - or not applicable. My favourite being "Don't sit down because it looks unprofessional". Chuckle. If you think my sitting is unprofessional, you should see my standing!

So I have returned to stand planning my way. Getting everything sorted early on so that when I arrive to set up the day before everything is planned, and everything has a home.

So far I've drafted a brochure showing all my keyring cards, sorted by topic, which will be displayed on a flip-poster stand-y thing. (I know what I mean!) A positive side effect is that I also now have a downloadable brochure of cards for customers to download and browse through or show to others.

If I sell all my products I'll clutter the stand, so I'll take samples of most things that people can play and hand out 10% off vouchers for online orders. And just have a few key items for sale. Like:

  • the Autistic Spectrum keyring card pack because I have had really positive feedback recently from parents and school teachers.
  • And the 'Positive Accessibility Symbol' stickers. Because happy, lively depictions of disability that are relevant to kids are few and far between - what better place to sell them than at a kids exhibition? Which probably means that most of my 'differently normal' stuff might need to come too.
  • And my children's books 'Welly Walks' and 'Biscuit Baking' - again, the general lack of positive, joyous, normal depictions of disability makes me want every child to read them,
  • And the 'Today is..' wristbands because these are one of my favourite (and best selling) items - so simple and yet such an effective communication tool.

And design posters showing my product types....

....and probably change my mind in 2 weeks.

All without visually overloading my 2x3m stand....I think I have my work cut out!








Sunday, 11 January 2015

"My kingdom for a fork!"

Not long ago I tried out some adaptive cutlery at my local Independent Living Centre.


It is one of those things that will probably only make sense if the pain and effort of picking up your knife and fork to eat dinner makes 'curl up and whimper' seem a sensible thing to do.

Suddenly a whole new world of actually eating dinner without having to down-tools every few seconds was tantalisingly close.

Unsurprisingly, I placed an order with the CompleteCareShop, opting for the Newstead angled knife and fork, and an easigrip sharp knife. (And a garden fork - but I haven't tried that out yet.)

But I had to wait for delivery - with every meal after placing the order accompanied by a little song of hope in my head perhaps soon the parcel will come! Perhaps tomorrow I can eat without so much pain!- A song which I admit became increasingly desperate.

Then yesterday, after a few days away, my hands were in a bad state...and the rest of me was an exhausted zombie. I had to eat but the only microwave meal in the house had a chicken breast in it. The very thought of cutting it made me want to weep. Oh well, I'd just have to eat what I could....

In that 8 1/2 minutes between putting it in the microwave and hearing the ping, my cutlery arrived! And yes, it really is that fabulous!

It felt a bit weird to start with, and takes a different technique, but for probably the first time in weeks I was able to eat a whole meal without a) getting someone else to cut it, and b) having to keep putting my cutlery down.

Ok, so cutting an overcooked chicken breast isn't exactly chopping up steak, but for someone who has been defeated by a mushroom, it's a near superhuman feat :D

[Note to any members of the Hypermobility Syndromes Association: The company PETA UK have some cooking utensils with similar grips, and the gardening tools too. HMSA members get 10% off! (I only remembered this after buying them elsewhere. Duh!) ]

Tuesday, 25 November 2014

Two offers of help

The other day in town I had 2 offers of help.

The first I was about to put my chair into the car. A man approached and asked "Would you like some help?"

Something about his body language and sincerity of expression rang all my alarm bells. In that split second I knew, just knew, that he would be one of those who tried to insist on helping even when it wasn't helpful, and wouldn't listen to my answer.

So I steeled myself for a fight and gave my first line of defence "No thank you. I'm fine thanks" with a confident smile. I could almost feel the more assertive lines queueing up ready for use.

And then...

He smiled back, wished me good day and carried on past without a pause.

It was perfect.

It was unsettling. I must not make snap judgements about people!

The second was in a small shop. A really tiny space. A 3 metre long, 1 metre wide corridor of floor between the door and the till. I had just paid and was leaving. A gentleman entered and was standing by the door.

The door is fabulously light and easy to open. I wish more doors were like that one.

I approached the exit and the gentleman said "Allow me" and opened the door.

"Allow me". Such a charming old fashioned saying! No pity, no assumption of inability, just respect - and as he was standing by the door it made sense to hold it open.

There was only one possible response: "Why thank you!" accompanied by a slight bow and a huge grin.

And there you have it. 2 perfect offers of assistance within an hour. One offered sincerely but listening to and respecting my answer. The other was simple charming politeness, with no connection to my disability.


Thursday, 20 November 2014

To the young lady responsible

To the young lady responsible for the diabetes cards,

I would like to thank you on two counts:

Firstly for asking for these cards - your Mum was really fun to work with and I am glad you like the results.

But secondly, and more importantly: For reassuring me that when people don't listen to me, it isn't my fault.

You may not know this, but when I was chatting to your Mum she said how you were bright and perfectly able to speak up for yourself, but that sometimes you found it difficult because people would assume they knew better, or just not listen.

Well, ME TOO!! Sometimes it's like I can't get people to understand, even though I know what I'm saying is right. I hate it. It makes me feel small inside, and it can be a bit scary when what I'm saying is important and if they do the wrong thing it could hurt me or make me worse. Do you find that people not listening makes you feel less confident about speaking up next time you need to? I do.

So it is very reassuring to find that someone else with a completely different condition finds the same. It isn't because of us, it isn't because of our conditions - it's because people are people. And sometimes people aren't good at listening.

I am really glad that your keyring cards help other people listen to what you have to say, just like mine do for me. I think perhaps the fact that they are written down and look official makes people take what they say seriously. And perhaps the little stickmen make the message happier so it gets into people's brains more easily.

Either way, I hope you are proud of yourself for your part in creating these cards which can help lots of other people like us be heard and to approach life's challenges with confidence.

Thanks again,

Hannah Ensor.

[Note: photo used with kind permission of the young lady's parents.]

[See here for the full range of keyring cards, covering a wide range of topics including diabetes, pain, fatigue, hearing difficulties and autistic spectrum disorders.]

Wednesday, 19 November 2014

Can't, Can, and everything in between



A friend posted this image on Facebook.

I love it. It allows for difference, and it allows for achievement.

To achieve the best we can always takes effort, courage and persistence. When it comes to us with disabilities, a little ingenuity and perseverance means we can frequently do more than expected. We may do things differently, we may use customised equipment, but we can still do awesome things.

But we all have our differences and our limitations. Real limitations.

Which makes the 'You can do anything you put mind to' and 'Everyone can achieve their dreams if they want it enough' phrases nonsense.

For example I cannot sing well.

If my dream was to become a professional opera singer, no matter how much I trained, no matter how much I worked and practised, I would at best be the 'scrapings at the bottom of the barrel' when it came to casting. And I would have devoted my life to something in which I had no real prospect of success.

This doesn't mean we see a barrier and assume we can't, but that we consider it and decide whether we go ahead with finding ways round it, or we look around at our options and head of in a new and equally interesting direction.

It was by doing this that I found my new and much loved career in stickmen cartoons. I was an Environmental Health Officer and loved it. I had to medically retire. I looked at ways I could continue in the field around my limitations and I looked around at what I really wanted, and what other options there were. And I found stickmen, and in using my stickman skills while considering Environmental Health options I ended up deciding that actually, stickmen were more fun and more suited to my lifestyle. If I had clung to my dream of being one of the top EHOs in the country I would never have found my stickmen, would have had to make huge sacrifices in every other area of my life, including with my health, and it is doubtful that I would ever have achieved my dream - a lifetime of struggle for very little reward. Instead I found a new dream: an international stickman business which helps break down the barriers of misunderstanding and miscommunication around disabilities.

Admitting 'can't' doesn't mean weakness when it is replaced by things we 'can' do. Nor does it somehow reduce our value to recognise our limits (whether temporary or permanent.)

In life, 'Can't' happens. So what? Let's be too busy with 'Can' to worry about it.




Monday, 3 November 2014

Little things

I love being able to wear snuggly jumpers, and thick slipper socks.

I love warming stews and hot punch.

I love cosy evenings with the candles lit.

And I love how easily amused my 18yr old sister is.....





Tuesday, 28 October 2014

Hypermobility type Ehlers Danlos Syndrome: Progressive or not?

I've noticed this discussion recently on social media.

The problem is that there is a difference between 'a progressive condition' and 'a condition which can cause progressive levels of disability'. With the former, deterioration is inevitable. It will happen in every case. In the latter, it will happen in some cases.

With hypermobility type Ehlers Danlos Syndromes (which many experts consider as the same as JHS and BJHS), the genetic fault that has caused the faulty collagen remains constant. It doesn't change. It doesn't progress in a medical sense of the word.

But the symptoms can get worse. The level of disability can progress.

Mine got worse. Lots worse. I deteriorated from a 20 year old with a few quirks and vulnerabilities, to a 28 year old wheelchair user, retired on permanent ill health grounds, with unstable joints throughout her body and who struggled to hold a conversation or eat.

With the benefit of hindsight and everything I have learnt since being diagnosed at 24, I can see that the reasons for my deterioration were 3 fold.

1. I was overdoing it. I was doing more than my body could cope with, and ignoring all the signs that my body wasn't coping. Because I didn't think they were real symptoms, and I didn't want to 'give in'.

2. With injuries and pains I often rested more than I should have done, causing muscle wastage - and more pain and instability. (some rest post injury is important, but I now know that keeping moving and slowly increasing use is important.)

3. I lived in positions where my ligaments were being stretched (slouching at the computer, twisting my legs into 'comfortable' positions, poor shoulder posture etc.)

So my condition progressed. I deteriorated.

But since then, I have improved - HUGELY.

No, it was not a magic cure.

But I have improved. What happened? A combination of factors.

1. I started a medication for POTS which meant my body could cope with the basics of eating and talking without throwing a compete hissy-fit.

2. I learned about managing my HMS/EDS, much of which was through the Hypermobility Syndromes Association (HMSA).

3. I crashed out. Big time. 5 weeks in hospital time. There I learned (the hard way) that when my POTS symptoms started building, I should take evasive action (cool down/get my core and leg muscles working/lie down/drink rehydration stuff) instead of waiting for symptoms to reach avalanche status and swamp me - In short I learned to pace. To put into practice what I'd learned from the HMSA.

And I built the confidence to communicate about my management choices rather than just do what I thought I was being told by the next medical professional I saw. Learning to communicate about my  choices in a way they understood and could respect, so we could work together to improve my management.

When I went home instead of trying to do as much as I could to prove I wasn't 'giving in', I started listening to my body. I learnt that I couldn't cycle for 10 minutes - it made me unable to function for days. But I could cycle for 2 minutes provided I concentrated on keeping my joints in good positions and my muscles nicely activated. 'cos that only tired me out for an hour. (By slowly building up, I now can cycle for half an hour and more!)

And I worked at living with poise. Not like I have a poker up my...spine. But upright, strong, and ready for movement. Like a gymnast about to do a run-up for the vault.

I admit I tend to go in cycles. I start committed to my exercise regime, careful with joint positions, I pace well etc - and improve. As I improve, other things start taking priority....business, housework, socialising. And I start to deteriorate again. Then I suddenly realise, feel a little foolish, and start being good again. - and as I am good, I improve. Until I get complacent and the cycle starts again.

But the important thing is that I don't go so far over my body's limits any more. I recognise the warning signs so that when I start being good again I haven't caused new damage to my ligaments.

And at 32 I would say I am stable. Not because my condition has fundamentally changed, but because I know how to live well with it.

If we keep doing more than our bodies can cope with, we will get worse. If we consistently do less than our muscles need to in order to stay strong, we will get worse. But if you think about it, this is actually true for everyone. That is what happens to every human being who does too much or too little. It is why athletes retire young - and frequently with a long list of injuries and why people get injured doing 'unaccustomed exercise' all the time.

During those pre- and early post-diagnoses years, many bits of me have worsened - been more stretched. And I expect I'll stay stretched. But I don't expect to pick up more outside of the general deterioration that happens with life in general unless I have a bad accident or significant illness or develop another condition which makes managing my HMS/EDS even harder - and thinking about it, those types of things can happen to healthy people too and cause a deterioration of their physical condition too.

It is more, as a friend 'Flick' said to me "relapsing/remitting (flare/rehabilitate), with some cumulative tissue damage. Un-managed it mimics progressive."

My body will never be one that can cope with 'average'. It never has been. Finding the right balance and maintaining it will always be harder for me than the average bod, but it is doable.
And I am extremely grateful to the HMSA, the hypermobility clinic at UCH London, and my cardiologist for helping me learn to manage my condition, so that I can respect and understand it instead of fear it.

To all you who have not yet been able to find the right balance, don't give up. It is hard work, but also very, very rewarding.

(Images are extracts from the book "You know you have HMS or EDS when..." by Hannah Ensor.)