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.

Tuesday, 10 April 2018

Disability Stickers

In February, Stickman Communications released new car stickers, door stickers, and 'anywhere you like' stickers - which I designed.

These include:

  • Multiple colours of Happy Accessibility Symbol stickers (in large or small) which can be used inside, outside, on cars, mobility aids, shop doors, signposts, books, medical equipment - wherever they are wanted. 
  • Car stickers which focus on getting key points across with charm and humor - about the need for extra space, flagging up that not all disabilities are visible, and that the driver uses hand controls.
  • Door stickers to let delivery people know to allow extra time for you to reach the door, without advertising that the occupier may be vulnerable.

All these stickers are on our website: where you can also see more information on the types of fixings available.

But why use silly stickmen on stickers with serious and important messages?

I often find that serious explanations don't seem to sink in. The every-day reality of living with a disability is so very different from the experience of a non-disabled person that it can be very difficult to explain why something is necessary (or to be avoided). If the level that they can relate to the situation is that 'It's a bit annoying when that happens' (for example if someone parks too close it's annoying because they have to sidle through the gap and do minor contortions to get into the car - not realising that for a disabled person they may then have to wait indefinitely until the owner of the other car has finished their day and returns - which could be hours). From this perspective, requests that they change their behaviour can be seen as creating drama or being demanding. Attempting to explain why this isn't the case can then be seen as further proof that we are over-reacting.

This isn't because most people are nasty - just that human nature is to see life from our own perspective.

I find that the visual clarity of the stickmen, combined with their charm, can get across this instant understanding where spoken words often fail - somehow bypassing a lot of the assumptions and preconceived ideas that create misunderstandings.

The other half of the why is: because I wanted them. I want to have something on my car that lets people know I need extra space. I don't want stickers on my car that are angry and get other peoples backs up, or which are dull and boring and convey my disability as a dull, official thing. My disability is a normal part of my life - and I love life. So the only stickers I want on my car are ones which have life to them.