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?

Saturday, 28 April 2018

Accessible Glamping

A few weeks ago I was looking for somewhere I could go for a short recharge break. I love the glamping idea, but could I find the right one for me? My criteria were: wheelchair accessible, trees near, campfires allowed, and not on a big site with lots of people. My expectations were low. More like non-existent.

And then I found The Bulworthy Project, in Devon.

The owners live in 12 acres of private woodland which they manage - and in that woodland is a small, off grid, wheelchair accessible log cabin.

I stayed for 3 nights and LOVED it.

I enjoyed the outdoors, both in sunshine and rain. (Bring waterproof trousers and jacket!) The woods are small, but varied. And I often found myself just sitting - getting lost in the sights and sounds, or lying back and having a nap under the trees.

And I enjoyed the indoors - warm, cosy and dry. I even did some editing of the next stickman books!
Collage of 8 photos of trees, woodland clearings, more trees, beautiful trees, and a happy me.

 Collage of photos 5: 1. printed draft of a stickman book with cup of tea, 2. more trees, 3. camp fire and dinner, 4. camp fire, 5. After dark, camp fire in background, cup of tea and book in foreground.

Collage of 4 photos: Wood burning stove; happy me in a tree in the rain; chair stuck in 8 inch thick mud soup; photo taken inside cabin of music score, tenor recorder, and woodburning stove in background.

And yes. I totally plan to go back again!

About the cabin:

The official blurb is on the owners website

This is the official photo of the front of the cabin:

Internal access:

And I've added some access notes below.

This my sketch of the layout. The numbers correspond to the notes below.

C is written on the plan in places I can turn a full circle in my manual chair.

1. The shower. Very narrow, maybe 600mm. Water is heated by the wood burning stove, and once it's hot the tank stays hot for well over 12 hours. I asked if they had a shower seat - they didn't, so they bought one. And despite it being a big stool in a tiny space it worked really well. Currently no grab rails.

2. The toilet. No grab rails, but can get my wheelchair in to the room, and the small wash hand basin means it's easy to use from wheels or standing. The mirror is a bit high, but I'm sure that can be sorted by the owners.

3. The bed is quite high. This image shows me perched on the edge of it. It was about 15cm higher than the seat of my chair. On the plus side this means storage space underneath.

4. Fold out table fixed to the wall, with 2 folding chairs. I put the folding chairs under the bed so I had better circulation space.

5. Wood burning stove (also heats water) on a large metal surround so you can't knock into the stove itself when you go past.

6. Wood store (with locked cupboard of water heating tech above)

7. unit with a few shelves and hangers. (currently all quite high).

8. Kitchenette - sink, 2 ring hob, drawers/cupboards with utensils etc in, and a small camping fridge. All the storage is either on the countertop, or below it, so no high cupboards.

9. Doorway, with a threshold of approximately 1 inch.

10. Veranda: covered, wooden, approximately 1.3m wide (guesstimate)

11. Ramp. (guesstimate 1m wide) takes you up the side and onto the front veranda. It's wide enough to store a power chair in the dry (unless the rain is horizontal) and probably wide enough to turn most wheelchairs round - but my Off road chair (Magic Extreme X8) isn't great at small turns, so I chose to reverse back down the ramp using the steering lock.

12. Steps down to grass.

The view from the doorway into the cabin, and then the view from inside the cabin through the open door where you can see a path into the woods.

The cabin is in a small clearing with a BBQ and a camp fire area, surrounded by young trees. The owners house is visible through the trees, but far enough away not to be 'overlooking'.

There is space to park on a lane about 3 metres from the ramp. There are main-ish roads close enough to hear an occasional truck, but not close enough to intrude.

There are no streetlights (obviously!) so bring a torch or two.

The accessibility of the woodland will depend very much on the individual and their equipment. I could go pretty much everywhere that was wide enough to fit my chair through, both along tracks and into un-tracked areas, although I avoided areas that looked excessively boggy. Well...most of them. I blameand got stuck and was cheerfully rescued by the long suffering owner. In fairness to the chair, that mud would have drowned a quad bike . (I have an Extreme X8. I think a standard power chair would have seriously struggled with much of the terrain and possibly completely failed, so please make your own assessment as to whether your chair would cope!)

In a manual chair getting around the woodland would be very challenging - there are some footpaths, but they are foot paths worn by feet, and the owners quadbike, and are going to be very affected by things like wet weather.

Any chair will get muddy. I'd advise having the wheelie equivalent of wellies that get muddy and are left on the veranda,  and slippers which stay clean and dry and are for use inside.

But part of the beauty of this cabin was that by opening the door or sitting on the veranda you are in the woods - with the birdsong. The BBQ and campfire areas are within a few meters (over rough grass, but close) so one day I barely left the clearing and still had a really lovely time.
Photo collage of 2 images: 1 photo of ramp to cabin, and 2 a campfire.
(The camp fire location is at the top right of the image with the ramp - you can see the log benches.)

Electricity: Solar power.
There are lights in the middle of the room, by the kitchen area, by the bed, and in the bathroom, and 2 USB sockets by the bed.
NO standard 3 pin sockets. So there is no-where to charge a power chair. My chair lasted staying there 3 nights ( 2 full days and 2 half days)  without charging and going on several 'walks' through the woodland each day, but not with much power spare. Speak to the owners if you might need to charge a power chair - but be aware that their home runs off solar power too so leaving a chair to charge overnight may not be possible. For a short break you may need to keep an eye on battery power and try and ration usage a bit. Like you would if camping in the wilds for real.

The cabin has wifi. There's nowhere to charge a laptop, but the wifi gives good phone access to the internet.

Phone reception:
I had no phone reception at the cabin (EE) - but could use the wifi to make calls. In the woods where there wasn't wifi, there was often phone reception.

If you speak to the owners (or email them) about access needs they can help - e.g. I asked about a shower seat and they bought one for my visit.
They are also very chilled and real about disability - not once did they say I was brave, or question my competence/ability to look after myself. (Explaining why this is remarkable would be a whole blog post in itself - but many of you will know what I mean.)

Would I recommend it:
In short, if you think this sounds accessible to you and you love being in nature: Yes.

Tuesday, 17 April 2018

Symptom diaries: Are they worth doing?

Every time a medical professional asks me to write a symptom diary my heart initially sinks.

The thought of having to focus on my symptoms and write them all down is just depressing and feels pointless. And it's not like writing them down is going to change anything is it!

However, they can be useful. Here are my tips for making it a useful and positive thing rather than a depressing one:

  • Record both activity (including food if it might be relevant) and symptoms.  The fact you felt rubbish on any particular day isn't very helpful. But the fact you felt rubbish the day after having to stand around a lot is helpful info.
  • Look for patterns. Good patterns as well as bad patterns - whether it's 'I seem to sleep better  if I do those exercises before bed' or '3 hours of concentrating leaves me totally splatted'!
  • Make changes based on the patterns you've spotted. If something always makes you worse, look at what you might be able to change about it that might help. If something helps, see if you can use that technique at other times too.
  • They can be words, but they can be graphs, diagrams or images too.

Graph showing my fatigue/flop levels, with the top of the page being 'fine' and the bottom 'legless drunk' (which is how my PoTS presents when bad), and along the bottom or the page the type of activity (sitting, standing, walking, chatting, eating etc) And the wibbly line of the graph shows how my symptoms are affected by things.
Things like this have helped me to realise things like that a short lie down when symptoms are bad can make a really big difference, and that talking while standing is something best avoided on all but the most fabulous of days.

And yes, I know the readability of that image is poor, but I wanted to show a real activity and symptom diary I drew. Not a 'produced for the internet' shiny perfect one. Because symptom diaries aren't going to be glossy and neat most of the time. They are real, and wobbly, and tea stained.

One of their most useful uses can be communicating with health care professionals - especially about long term hidden disabilities / invisible illnesses.

Never underestimate this use.

An HCP will have had lots of people come in saying "I'm so fatigued" - and some people mean they are tired. Or feel a bit bleh. Others will mean 'I can't function'. It's very difficult in a 10 minute consult for an HCP to work out exactly what you mean by 'pain' or 'fatigue', and exactly how much it is affecting you.

In addition, spoken words can be harder to process accurately than written words. With spoken words we seem to remember our interpretation more than the actual words used....which can be problematic.

With an activity and symptom diary, by simply handing it over you can communicate:
- exactly what effect things are having on your life
- that you haven't given up.
- your proactive self management steps (like recognising what makes you worse, and trying to tweak things to see if it helps). This is perhaps one of the most important things to communicate because when an HCP can see the patient is willing to put effort in, it motivates them to put effort in too. (Perhaps this 'shouldn't' be the case, but realistically, as human beings, this is pretty much hard-wired in)

And it does all this without you sounding like you are complaining, and in a way they can put on their notes so that section of notes is totally accurate!

A symptom diary is not a totally magic cure for all miscommunication and misunderstanding, but it can be a very helpful tool.

If you want somewhere to start, have a look at our exercise effect table - available from our website as a free download ( or as a printed sheet (Problematic Exercises form Paper Version - it's a great way to start this communication process with an HCP who wants you to exercise more at the same time as helping you find out what level of exercise actually works for you. The idea is that you write down what exercise you did and how long for/how many, and what the effect was. If the effect was too bad, you wait til you've recovered, then try a smaller amount/easier version. If it was easy, then you try more/a harder version - and keep recording what you do and how you respond.

So in conclusion, while I still don't like being asked to do a symptom diary (because it does take time and effort) I also love them for how useful they are in helping me to self manage and to communicate effectively with HCPs, and think they are well worth the hassle of completing.