Thursday, 23 February 2017

Customer consultation: Keyring card dividers and folders

For some time I've noticed that many of my customers (including me!) have quite a few stickman cards. Sometimes having lots of cards can mean that finding the right card quickly is tricky.

Over the past 5 months I've been looking into various possible solutions and have come up with the following:

A set of 4 polypropylene dividers that is the same size as a card, with a tab - so they will be durable, waterproof, wipe clean, and wont fray or disintergrate at the corners.

The sample ones I made are clear, but the actual dividers will be opaque, and in 4 different colours so it's easier to see them (blue, green, yellow and red). The dividers can also be written on with marker pen.


 And I have also found some sticky 'tabs' which can convert the cards and dividers so they fit into any standard 2 ring ringbinder, and also pocket filofaxes! (If you later want to remove the sticky tabs, and don't want sticky patches on the back of the cards, nail polish remover works well.)

So I now have my set of 20 cards plus the prototype dividers in my old pocket filofax (150 x 130 x 30mm) and I love them!
Photo of my pink pocket filofax with some cards in it, and to the left are a set of 2 tabs and a 'cuppa needed' card.

Photo showing a tab being looped onto the first ring of the pocket filofax. - one is already looped onto the 5th ring. (Make sure the tab is sticky-side up!)

A photo of the 'cuppa needed' card being placed onto the sticky tabs, and stuck down.

A photo of the finished filofax of cards and dividers.

Another photo of the finished filofax of cards and dividers, with the section of cards being flipped over.
Creating the overall effect of having a totally customisable and durable book explaining my normal, which can be used to answer 'whats wrong with you?' questions in both social and medical contexts, and as a way of clearly explaining needs and symptoms.

(Cards not included. Neither is the the file so you would need to get one from elsewhere - there are some really lovely pocket filofaxes around.)

So, would you be interested in a pack of dividers for around £3.50?

And would you be interested in a 'conversion pack' of 50 sticky tabs (enough for 4 dividers and 20 cards) and the 4 dividers for around £8?

Please let us know by commenting on our FB post, on here, or on twitter.

- We won't stock them if no-one wants them, but if lots of people want them, then we will!

Wednesday, 22 February 2017

Coping with the guilt of hidden disability

I was recently asked how I fight the guilt that comes with disability and medical conditions. The guilt from not doing tasks you feel you 'should' have, for not being able to help out or socialise with friends and family in the same way that others can. For not being able to work as much etc.

I think perhaps over time I have learnt not to fight it.

It's more that I let it fade away. I can't control how I feel - but I can control what I do with the feeling.

I recognise that yes, I feel that way sometimes. But I also don't have to believe it, or act as if it were true. And over time, although guilt still floats through my brain sometimes, it does so less and less. And affects me less and less.

You see, if I can't do something without unacceptable side-effects, then I shouldn't be doing it.

And once I've made that decision, instead of looking at what I can't do, I look at what I can do. I can't help set the tables for a party - but I can fold the napkins. I can't run around with the nephews, but I can play monopoly.

I also measure my achievements by what I found hard but managed anyway. Putting something that is challenging for me, today, on my 'To Do' list each day. Not challenging for someone else, not challenging for me on a good day, but challenging for me. Today.

 Having a schedule also helps because then I feel I have more of a purpose to my day, and it makes pacing easier too. Then instead of feeling guilty about what I can't or haven't done, I can see what I have done and celebrate it.

A win-win situation!

No guilt needed.

Tuesday, 21 February 2017

HMSA's Hypermobility Spectrum Disorders Ambassador

I'm really looking forward to getting going with my new role at the HSMA: Hypermobility Spectrum Disorder Ambassador.

Below is the article from the HMSA on my appointment (reproduced from the HMSA website, with permission.)

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HMSA Youth Patron, Hannah Ensor, is to become the HMSA’s Hypermobility Spectrum Disorder* Ambassador.

Hannah has worked closely with the Hypermobility Syndromes Association for a number of years and assists with raising the profile and awareness of Hypermobility Spectrum Disorder; the new name for hypermobility syndromes which are not covered by EDS, OI, Marfan, Stickler and PXE.

Hannah takes part in the HMSA’s self-management programmes and participates in our work with professional members as the ‘patient voice’. She is also well known for promoting the rights and needs of people with disabilities and is spending a second year as one of Britain’s 100 most influential people with a disability.

Hannah regularly fundraises for the charity and has a hugely successful business which has enjoyed global recognition, called Stickman Communications. You can view Hannah’s work on her website, stickmancommunications.co.uk

“I’m honoured to have been offered this exciting opportunity and am looking forward to helping further raise the profile of hypermobility spectrum disorders* – particularly highlighting the fact that the whole spectrum of conditions can range from mild to severe depending on how each individual is affected.

 Over the past few years, as a Patron of the HMSA, I have seen an increased number of people taking hypermobility syndromes of all types more seriously -and I’m excited by the prospect of being able to help build further on this important work, among the general public as well as in the medical and patient communities.”

*Please see our HMSA statement of position on the 2017 International Criteria for Ehlers-Danlos syndromes which explains how our use of terminology has been, is and will be changing.


Friday, 10 February 2017

"What have you done?"

I dread this question.

"What have you done?!" I risk being asked every time I leave the house, and inevitably it is followed by a outpouring of unwanted - and unwarranted - pity for the fact that I'm disabled.

Today as I was leaving my Mum's house, her neighbour arrived home. I've not actually met him before. I was using one crutch - having been able to park within 2 metres of the front door.

We said hello. And then...

"Uh oh, what have you done?" he says.

Me: (Thinks: Oh no. Another 'oh that's so terrible' pity flood to cope with.)
"Actually, it's better than my usual wheels. This is progress!"

Him: "Oh." Grin. "Enjoy it!"

I expected the 'pitiable' assumption, but what I got was the assumption that I could - and would - go and enjoy my day.

Sometimes it's lovely to be wrong.