Monday, 19 November 2018

My condition travels with me, but does it take the driving seat?

Finding your way to live well with a long term health condition is tough.

The condition is a part of every aspect of your life - always present. Something you must constantly take into account, and that might often stop you doing things you want to do. For me, this felt like it was taking over - that the condition was taking control and running (and ruining) my life.

Society often praises doing things despite having a condition - encouraging people to 'push through' and 'fight'. While there might be some conditions that 'push through' works for, in my case that only made me worse. And feel awful. As I got worse my condition dictated more and more of my life. Everything I wanted to do my condition stopped me - or made it horribly unpleasant. I felt a huge pressure to live as if I didn't have the conditions I do have - and it nearly broke me. Because I mistakenly thought living differently meant I'd given in.

Carla Spear, a friend with similar condition to me, said "It's like a bus - my conditions have to travel with me, but I am in the driving seat."

I loved the concept so much it became a poster.
Cartoon of a bus with a driver labelled 'choice', 3 passengers: skills, positives, & talents, and 'medical stuff on a trailer behind. Main text reads: My condition may travel with me, but I'm taking the driving seat. (c) Hannah Ensor 2013

To me it means:
- Not doing things just because someone else says I should.
- Not doing things just because I feel it's expected of me.
- When I want to do something, instead of trying to bulldoze my way through I (the driver) step back and ask myself: is there anything that will make this more doable? What do I want out of this? How do I get that without messing my symptoms up? I take control.
- I pace (Have a look at this blog for a bit more on pacing. here, and here)
- If I know something will cause loads of symptoms but I think it's worth it anyway, then I will do it - BUT - be prepared for the fall-out. Schedule in recovery time.

I find taking a planned couple of rest days is emotionally/mentally very different from unplanned crashes. An unplanned crash is full of 'I was supposed to be doing x, I ought to be doing y, I can't do z' and often feeling to exhausted to work out what I need to do to help myself. Whereas a planned recovery is full of 'I did it, paying for it now, but so worth it', and it carries with it the recognition that my rest is valid, important and empowering. The planned recharge means I've already planned some things to do to help me recover - ranging from gentle stretching and cross stitch to heat packs and takeaway meals. And it's DECIDED. By me. Not by my condition. By me. My condition made it necessary, but I chose to do it on my terms.

I used to switch between trying to insist my conditions weren't travelling with me and me allowing them to take the wheel. Now I am in the driving seat and they are travelling with me, but not in control. I might need to adjust my driving style to take my conditions into account, but it's still me making the decisions.

It doesn't mean I can do everything. Sometimes I decide the symptoms/rsk isn't worth it - but that is my decision. My life is definitely shaped by my conditions, but it is no longer dictated by them - instead I take my conditions into account when I make my decisions. As a result I am happier and healthier than ever.


Saturday, 10 November 2018

When you discover a product that makes you cry...



On Thursday we were at the Kidz to Adultz North exhibition in Manchester. We met lots of lovely people and got some great feedback - but that's not why I'm blogging today.

As an exhibitor I don't get chance to look around much, but one thing I always do is make a note of the nearest stands with beds on, make friends with the staff, and then periodically be a model for them whenever I need a horizontal pacing break.

GrandeThis time the stand opposite was AAT. One of their specialities is positioning aids. They have these blue cushion things that you sit/lie/lean on, have a good wiggle to make it comfortable for you, and then all the air is pumped out and it solidifies creating the perfect resting place for your tired body/limbs.

Anyways, arriving early, as all good exhibitors do, I got chatting to them and asked if I could try their nearly-full sized mattress thing (a slightly smaller version of the grande: https://www.aatgb.com/grande.html ). They agreed with enthusiasm, and cheerfully went through the customising-it-for-me process.

Several years ago I tried a cushion by them, which I borrowed for the event, and which gave heavenly support to a very grumpy and unstable wrist. But this was a whole different level. I lay there waiting for the usual build up of pain from joints being forced out of line by my body weight, and pressure on painful areas.....It didn't happen. Instead I felt myself relaxing - properly relaxing - and not a single joint slipping out of line!

All too soon the event opened and I had to get out of bed and go to work.

My pelvis and sacro-illiac joints have been having a grumpy patch. As I worked at my stand my lower back muscles kept getting tenser and more achy, and nothing I could do eased it for long. The kind of pain where rocking and whimpering feels like a genuinely good idea.

Then I had a lull in customers. I nipped across the corridor and snuck back into my custom cocoon, with it's additional pressure relieving blanket-y thing, shut my eyes, and teared up. The relief was almost instant and overwhelming. It's hard to explain what it's like to suddenly able to relax without any joints slipping out of line to someone who's joints naturally behave! To relax without needing to consciously keep enough tension that things don't get injured! To relax and feel completely and utterly supported while also feeling like you are floating in softness! I could wiggle or stretch out when I wanted to - then relax back into supported perfection.

For the rest of the day, every time my table was quiet I slipped back to my cocoon. It became my number one pacing tool. The only problem was that as I got more tired, it took more and more will power to get out of it! I confess I even ignored a few customers......but on the other hand, by missing 2 customers I was able to recharge enough to speak to the next 20 properly! So I don't feel too guilty about that.

I even did a few sales pitches for them and got to demonstrate the pressure relieving effect: They put a special pressure sensing sheet over the cocoon so that when I lay on it you could see the pressure level in different colours on the screen. I wish I'd taken a photo of the screen! pressure levels were consistently at level 1 and 2 over my whole body - on a scale of 1 to 10 - with 10 being the reading under my butt when I sat up.

(Note: because it's cocoon-y, it might not work for everyone as getting out of the cocoon needs a bit of strength or assistance. But for me this was at a manageable level.)

So next week will have two high priorities:
1. find out if I can borrow one and test it out overnight - a 10 minute nap and a full nights sleep are different - and I really need a solution to at least some of my sleep issues!
2. Work out how to afford it. As an assistive device that might transform my sleep, it's actually quite reasonable - if I remember correctly it was between £1000 and £1500. But that's still enough to need some serious planning!

(And no, I'm not being paid to write this, nor do I have any connection to AAT except wanting their products! I just thought that finding something so lovely and needed and effective that it made me cry was an important thing to share in case someone else finds the same!)

Tuesday, 30 October 2018

Brain Fog Blips #1: Avoid the lobsters.

Brain fog is an ever-present companion for many people with disabilities, and most people have moments of brain fog when they are really tired, albeit often to a lesser degree.

I'm someone who gets a LOT of brain fog. To the point that I routinely reply to more complex enquiries with 'Sorry, I'm too foggy at the moment, I will get back to you in a few days.' And when having conversations with the uninitiated, I often explain in advance that sometimes the fog means I can't find the right words, so if I'm not making sense, don't worry, but do check what I mean!

I used to find it frustrating, but as I've got more used to it, I've come to accept that it's just one of my many quirks, and I can't get rid of it so I might as well enjoy it.

Recently I've had a few brain fog incidents which still make me chuckle a few weeks later so I thought I'd share them with you, as I'm sure many of you will relate to them and be as amused as I was by these #BrainFogBlips.

I was going to do just one post, but then I realised I have far too many moments for one post, so instead I'll share the first one now, and do new #BrainFogBlip images whenever the inspiration and fog combine suitably.

So here goes: #BrainFogBlip 1:

I was driving a car with a trailer while helping out with some woodland management. All was fine and fabulous. I'm getting really good at reversing with a trailer (well, really good by my not-so-good standards, anyway, and trees can cope with the odd scratch). However, attempting to reverse near the workshop where there were lots of random obstacles was quite a challenge.

"Just go straight, you'll be fine" my nephew says, looking at the angle of the trailer, but not the random timbers, rocks, and containers lining the narrow track.

"I know - I just need to avoid the lobsters!"

Image description: #BrainFogBlip. Stickman reversing a trailer in woodland, saying "I just need to avoid the lobsters....?...obstacles!" while a second stickman stands near, laughing, and imagining a big lobster on the track.


Pause. Reassess phrase. Err.....I think that should have been 'Obstacles' - I mean, lobsters is like nearly an anagram of the right word!

While the nephew howled with laughter before commenting "Yes, that's definitely Hannah!"

The image of giant lobsters obstructing the quiet woodland path still makes me chuckle.

Thursday, 18 October 2018

My 2 favourite hypermobility/PoTS hacks:

There are loads of tips and tricks for living with disability that only come with lived experience - sometimes our own experience, and sometimes others who've lived with similar conditions or symptoms and discovered things that work for them - which turn out to work for us too.

Anyways, this isn't a long blog. It's just two that I currently love. One newly discovered, and one newly remembered.

1. ARM WARMERS.
Picture: Hannah wearing a white T-shirt with small flowers on,
and hot pink arm warmers. And a smile.
As someone who loves soft warmth but is also heat intolerant due to PoTS, it makes the cooler weather somewhat tricky to cope with. Until: Arm warmers. They mean I can keep my arms snug without my torso overheating. And if it's a bit more chilly, a light scarf plus arm warmers is heaven. And I'd recommend looking on Etsy for arm warmers in your size - I found lots of nice ones on there last autumn - which have been brought back into use thanks to a fellow POTSy facebooker reminding me how awesome they are.

I have proper chunky knitted ones, and soft, thinner jersey ones. And all of them are long- otherwise my elbows get chilly. I usually wear black ones, I want a pair of blue ones, but hot pink have their place too!

2. Floor-based ironing.

Image: ironing board lying on the floor, with a shirt and an iron on,
and the knee and foot of someone sitting on the floor, using it.
Clearly this won't work for everyone, but it was a real light bulb moment for me. I have tried ironing standing up. Burns. Sitting down means board at wrong height. More burns. I literally hadn't done any for months. (except before my brothers wedding when I burnt my arm). Anyway, I was on holiday and having a wobbly legs day but wanted to wear a shirt that had got crinkled. And the ironing board was on the floor - so I plugged the iron in and found myself in a half crouch half kneel at the still folded ironing board - and it really worked! My body likes sitting on the floor and I could adjust my position easily and securely without needing much balance, and with minimal POTS aggravation!

So there you have it: Wearing arm warmers and crouching on the floor to do the ironing are my current favourite hacks.

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?

Why?

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'.)