Friday, 12 October 2018

New style keyring cards!

Today we launch the first few key ring cards in a new style!

They are exactly the same size and construction as the stripey cards we've been producing for years, but instead of bright and stripey, they are pastel and plain.

Why? Because some of our followers have been telling us that they love our work, but find the colours on the cards too bright.

So we mulled it over for more than a year, got inspiration a few months ago, got feedback on social media, finalised it a week ago....

....And they arrived today!

As stripey-border stock of cards gets low-ish we will be reprinting in plain-border. With over 150 card designs, it is likely to be months before we have the full range in the plain-border style. We will stock both border styles alongside each other. So when you chose a card that is available in plain, you will be asked to select stripey or plain.

We decided to use 4 colours on the new cards.
  • Lilac: Cards explaining a specific conditions.
  • Pale blue: Cards giving general information about symptoms or needs.
  • Pale turquoise: Cards that can be summarised as 'here and now, I am OK.'
  • Pale orange: Cards that can be summarised as 'here and now, I am not OK.'
With a few exceptions: The emergency cards will keep their bright red background, and the traffic lights cards will keep their strong red/orange/green. This is because, for these cards colour is an essential element of the communication they facilitate.

Some cards don't easily fit into a category, in which case we will do our best to allocate them a sensible colour.

We currently have 12 designs in this new style, and expect to print new ones every month or so.

You can find all the cards available so far in this new style here.

While our range of cards in this new style is very limited, we've added a new page to our website where we'll put all the cards available in this style in one place (as well as being able to select either stripey or plain border on the main product page). 

Wednesday, 12 September 2018

A day of Acceptable Flop.

As many of you know, I'm hypermobile.

A big part of managing my hypermobility is learning to use my muscles to keep my joints from flopping to end of range and stretching ligaments even further.

However, this doesn't mean I never flop. Sometimes I just don't have the energy for anything else. Mental or physical.

This morning I did stuff (an opticians appointment!) this afternoon I'm flopped.

Or, as I originally mis-typed it, flooped. Which also seems applicable.
Image: a stickman slouched at a computer looking exhausted. Text "Today is not a day for brain. Nor a day for enthusiasm. It is a day for temporary flop and gentle attempts at semi useful tasks."

I still need to try and avoid real extremes resting positions, but levels of curling up and supporting one body part on another (like head on hand, arm on knee etc) which are bendy but not at the limit of my range are fine. Flollopy fine.

I could run off determination and adrenaline, and force myself to do stuff - which gives the impression of energy. But that will mean I take loads longer to recover, and I don't need to. 

So instead I'm declaring acceptable flop for at least a few hours, which involves a lot of sofa, some gentle moving, and a few short tasks at my computer in whatever position works for me. Provided it's not at my maximum bendy positions.

Happy flooping to anyone else having a similar time - I wish you a speedy recharge!

Monday, 6 August 2018

Aren't most places accessible?

The other day I had to crawl up steps to reach a hotel gym.

It actually appears to fairly common in hotels. I think the unconscious bias of many designers/venue planners is that gyms are for people able to exercise, so stairs won't a problem - forgetting that disabled people need to stay strong and fit just as much as everyone else!

That got me thinking and I realised something.

While I usually do a lot of accessibility research before going anywhere, whenever I go somewhere new, and often when I go somewhere familiar, when I choose my outfit a key factor is: can I crawl in this?


Because so many places aren't wheelchair accessible.

In the past year I have:

Crawled to access shops.
Crawled to reach products.
Crawled to reach toilets.
Crawled to reach a shower.
Crawled to reach station platforms.
Crawled to reach gyms.
Crawled to reach my hotel room (and yes, I had booked an accessible room)

And probably more.

Because of broken lifts, or no lifts, or steps with no ramps, or narrow doorways or corridors, or products and display units blocking aisles.

And that is only in the last 12 months.

A few years ago I crawled onto a stage as a speaker.

I am privileged, I CAN crawl (and sometimes walk short distances too), and my chair is very light weight. For many wheelchair users each of those places would have simply been inaccessible.

Without my ability to crawl I would have been unable to get my shopping done, unable to have a wee, unable to shower, unable to attend meetings, unable to exercise, and found myself stranded in a foreign country at 9 pm with nowhere to stay. All within the last year.

I am also privileged in that when most people think 'access' they think wheelchairs. So wheelchairs are often the most accommodated 'group' of disabled person. But people often don't think hearing impairment, or visual impairment, or mobility impairment but still able to walk (evidenced by how often the signposted 'accessible' route involves a long detour) - or any of the huge range of often invisible impairments that will need adapting around but where requests are often met with blank looks or 'that's not in our policy'. So their experience of accessibility may be even worse than mine.

So yes, the law requires accessibility, but please don't confuse that with everywhere actually being accessible.

And if I have to crawl within your establishment, it's time to look very seriously at your access!

(Note: I have used the word 'crawl' - but some of these could technically be described as bum-shuffle or  slide. However, the 'get on to the floor and clamber any way you can to reach where you need to go' concept seems adequately conveyed by 'crawl'.)

Saturday, 28 July 2018

Drained. Time to recharge.


I don’t feel tired. 

I feel drained.

Not drained dry, but more like only a quarter full. 

I’ve had a busy few days both in terms of brain energy and physical energy. Some productive meetings and great gym sessions have been worth it, but today I don’t have the energy for sustained anything unless adrenaline kicks in. I need to slow. Do gentle things, but try to ensure that energy used is less than energy available so that I recharge. 

I can easily ‘push through’ and get things done anyway, running off adrenaline instead of ‘real’ energy. But experience says that will extract far higher payment later on - a far longer period of far greater symptoms. So why do it? 

This used to feel lazy.

So today is a Holiday Day. 

And instead of lazy, it becomes like when school was unexpectedly closed due to a fault with the heating. There is suddenly no ‘To Do’ list. 

Ok, so I have to drive home from the hotel I’ve been at, but even that takes a different shape. Breaks at service stations stop being calculated - trying not to extend the journey too much, and instead become something where I can nap for an hour, listen to an audio book while eating an ice-cream, or browse WHSmiths for books. (I’m so glad I always travel with stuff that makes the car very comfortable for resting!). Perhaps the 2 hour journey will take 3 - or even 5 hours to get home. But I will enjoy it. And recharge along the way.

In some ways what I do will be similar to what I do on a ‘bad day’ but with a very important difference - it isn’t done from necessity, but with a flavour of illicit freedom and luxury.

(This is blogged via my phone, sorry about any typos!)

Tuesday, 10 July 2018

PoTS, Pacing, and heat avoidance.

Like most of us with autonomic dysfunction of some kind, I've been finding this heat really hard to handle.

Even with employing my cool vest, spraying water on wrists and neck, putting my feet in cold water, and using fans around the house, I've been struggling. I've been getting an hour or two of work done in the morning before the heat builds up , then been restricted to horizontal for most of the rest of the day. Exhausted and barely functioning. And the effect has been cumulative - i.e. each day leaving me a bit more drained than the last. And to compound the problem, I've been unable to do much exercise because of the heat induced symptoms - and exercise is one of my main long term management strategies!

Then on Sunday a solution dawned on me. Hotels have air conditioning. Yes, they are ridiculously expensive. But on the other hand: FUNCTIONING!

Image description: hotel lobby area with chairs and tables, close up of laptop next to tea cup, and laptop users' feet up on a chair.
So I did it. Booked into an air conditioned hotel with an air conditioned gym for Sunday and Monday nights.

Bliss. (And hallelujah for the reward points my business stays have built up!)

I'm writing this blog from the air conditioned lobby at the end of my stay.

This break has taught me a few things:

1. Removing heat as a trigger doesn't stop me having PoTS.
Ok, so this sounds ridiculous written down, but I bet I'm not the only one who's done something similar:
Symptoms were so much better without the heat trigger, that I acted almost as though I had no triggers! I sat working in my air conditioned room. Symptoms were escalating and I was ignoring them. Fog and nausea got to the point of "I can't think....must think...try harder...must try...harder...." when it dawned on me that while I am now capable of sitting up without feeling horrendous, I still have PoTS - and I still need to manage it! This level of symptoms means "lie flat for minimum 15 mins and don't try to think". So that's what I did, and funnily enough it helped. And now I'm back to functioning ok again instead of still attempting to push through ever worsening symptoms.
I must remember that pacing is for all days, not just bad days! - If I'd paced and done my usual frequent wriggle breaks and snack trips I'd probably not have got nearly so bad. but hey, at least I noticed in the end.

2. Order kids portions for dinner.
In restaurants portions are often massive. Yes I can eat it all but it will make me so symptomatic that I'll be flopped for hours! So today I ordered from the kids menu. Much better. Next time I might also ask for a kids sized portion of an adult meal.

3. Doing more exercise will tire me out! Yes, it's good tired, but still may mean extra powernaps needed. Needing extra recharge breaks after exercise is totally OK, and doesn't automatically mean I'm getting worse.

4. Given how symptomatic I've been over the past few weeks, success is measured by feeling better when I leave than when I arrived. All work achieved is an extra bonus, but not something to 'push' myself for.

5. Balcony hand rails make excellent things to hold while having a wiggle break.

And finally:

6. Hotel lobbies are often air conditioned - and can be used for the cost of a drink from the bar. My mission over the next few days will be to find the closest quiet, air conditioned places that I can 'borrow' for a few hours each day.

So wish me luck as I play 'hunt the air con' in a small town with few hotels....but you never know, I might get lucky!

(and for the observant ones of you, yes, the project on my laptop screen in image 1 is the stickman pacing book in progress!)

(And if you are interested in resources to help people around you understand and accept some of the different approaches that life with autonomic dysfunction often needs, check out our autonomic dysfunction and pacing related products.)

Sunday, 8 July 2018

Autonomic Dysfunction and enjoying "the football"

I'm not a football fan, but I do enjoy watching the occasional match - espeically when England is playing.

And watching with friends makes it even more fun. Sharing the sense of expetation, the highs and lows seems to amplify them.

But this year although my local friends invited me to watch both the England / Columbia and England /Sweden games with them, I decided to watch them on my own. On a kind of gut instinct thing that I couldn't explain. Yes, I wanted to watch them with friends, and yet....

Half way through yesterday's match I realised why.

Sat in my living room half-watching it on the TV in the background while I did some cross-stitch I realised I had instinctively made some really wise condition management choices.

My PoTS (a type of autonomic dysfunction - see POTS UK for more info) is highly symptomatic due to this heat and I'm much more sensitive to all my usual triggers, including eating and sitting upright. But another trigger is stress - or excitement. Anything that gets adrenaline pumping. And while I love the hype of watching sport with friends, watching England in tense matches with some keen football fans would inevitably be adrenaline fuelled. I'd subconsciously realised that it would NOT be nice in reality. I would have spent both games a tacchycardic, dizzy, weak, nauseus mess from about 5 minutes in.

Even my cross-stitch was a condition management thing - preventing me from getting so involved in the the game that adrenaline would make me flop, but at the same time allowing me to watch it and enjoy it. So when we won I didn't yell and shout. I smiled to myself and gave a nod. We did it. Well done team.

It feels very odd writing this. It seems strange that by distancing myself I enjoyed it more. And yet, that is how it is.

So for our next match I will definitely be employing the cross stitch again!

Monday, 7 May 2018

My boots. The end of an era?

I've been a boot-wearer for well over 10 years now. For almost as long as I've been disabled.

My Doc Marten's (with zips) stabilise my ankles enough to help my ankle stability without restricting the joint. And they are comfortable.

But they are also beautiful. And I have a wardrobe full of clothes chosen to look good with my boots.

They've become part of my style. They get comments when I'm out and about taking the focus off my wheels and on to fashion.

Many of my boots are starting to look a bit tired - despite my polishing them sometimes. Yes, I genuinely, old-fashionedly, polish my boots.

Then, a few days ago, my hot pink boots died. The zip broke, and the patent leather is much cracked too. It's sad, but they'd had a good life. They even went to the House of Commons! But an era has ended. I will no longer be Hannah-of-the-pink-boots.

But I haven't only had Doc Martens (with zips - look, the zips are important to me, ok? It's like a skirt with pockets. Any boot related compliment is responded to with a variation of "And look, they have zips!")

I also had a great pair of walking boots - bought a year or two pre-disability. Sturdy, insulated, grippy. They made a huge difference to the stability of my walking when outside - meaning I could walk a short, assisted walk in snow. Trust me, that's an amazing feeling for someone as wobbly as me! And they kept my toes warm when off-road wheelchair-ing in the snow.

Another thing these walking boots did was protect my ankles and feet when I'm kneeling. I tend to do gardening sitting or kneeling on the ground. Usually sitting on the sides of my feet in some way. My walking boots meant that instead of squashing my feet and causing more ligament problems, I sat on the boot - and all was well.

Today my walking boots disintegrated.

I was doing my 'sit on side of boot' thing while removing some leaves from my patio when the sole peeled half off. Less than a minute later, the other sole did the same.

They are no more.

These 2 pairs of boots have seen me at my worst, from pre-diagnosis right through my journey towards understanding my body and how to live well with it improved.

But here's the thing:
Due to all the exercises I've been doing, I think my ankles are actually slightly more stable now. Not hugely, but enough that when I'm sat with my feet unsupported my ankles don't subluxate as much. And so I can walk in actual shoes some days. Previously I'd have to wear my boots to drive to the location (for example) then walk (in my boots - with zips) from the front seat to the boot of my car, get my wheelchair out, get into my chair and then change into posh shoes/summer shoes/sandals - and hope that the accessible loo was well enough set out for me not to fall between it and my chair! Now I can just wear those shoes or sandals right from home, and it's rather nice. this the end of an era? I'll still use boots where I need to maximise standing capacity, and I suspect I'll need to buy new walking boots, but it's also tantalising to think that I can go out and buy cheap shoes and actually be able to wear them!

Who knows what footwear I might use in the future?