Friday, 12 January 2018

Pacing decision chart: description

I've had a few requests to create a text description of our pacing decision chart - or "To Do or not To Do" chart, so here it is:

Title:
"To do or not to do?" pacing and activity decision chart, produced in association with the Hypermobility Syndromes Association.
(Note: This is a simplified version. The full version would fill a book. Exact processes vary between individuals.)

This chart has boxes with questions in - each box having a yes or no answer - which sends you down different paths to help you reach a conclusion about whether to do an activity or not (or to help explain your decision to someone else).

(Note: Most activity can aggravate symptoms, so it's not about avoiding pain and fatigue, but trying to keep them manageable. Trial and error is required to find this level, and it can change over time.)

Pathway 1:
Box 1: Will it cause so much pain or fatigue that I can't function for days?
No.
Box 2: Given current symptoms, will I be able to complete the task?
Yes.
Box 3: Is there enough recovery time between now and when I next need to function?
Probably:
Outcome: Let's do this thing!

Pathway 2:
Box 1: Will it cause so much pain or fatigue that I can't function for days?
Yes
Box 4: Can I make it manageable by: splitting the task into smaller sections? or using an adaptation or aid to make it easier? or asking for help with challenging parts of the activity?
Yes.
Box 3: Is there enough recovery time between now and when I next need to function?
No.
Outcome: Best not. It's OK for an emergency, but not for routine tasks.

Pathway 3:
Box 1: Will it cause so much pain or fatigue that I can't function for days?
No
Box 2: Given current symptoms, will I be able to complete the task?
No
Box 4: Can I make it manageable by: splitting the task into smaller sections? or using an adaptation or aid to make it easier? or asking for help with challenging parts of the activity?
Yes.
Box 3: Is there enough recovery time between now and when I next need to function?
Yes.
Outcome: Let's do this thing!

Copyright Hannah Ensor 2015.

There are other permutations but this should give a good overview of the chart.

Tuesday, 9 January 2018

Off-road wheelchair-ing in Bideford, Devon.

Over Christmas my mum, my siblings, their partners, and all my nephews and nieces (total 27 people!) stayed at a lovely place called Hallsannery House, in Bideford, Devon, for the week. It was great fun. Of course, my X8 off-roader came too.


The whole holiday was fabulous, but this blog is about the trips out on my X8.

On the second evening we went on a short walk along the coast path - it was wet, windy, and fabulous to be out - wrapped up warmly and going places that aren't 'wheelchair accessible' is so special!




In the grounds was a small woodland area, complete with rope swing. So on a drizzly afternoon, with waterproof trousers and coats, and a plastic bag to keep my controls dry, we went off to explore the grounds, going through rough fields with ease - although we didn’t attempt the long flight of stone steps. We spent ages at the rope swing - it turns out that grabbing the rope and driving quickly up the bank until I have to let go makes for fabulous swinging!!

It was raining a bit more than I realised, so we looked like drowned rats by the time we got back. A full set of dry clothes and hot chocolate quickly resolved that. The powerchair was soaked too - but fortunately the slate floored ‘boots’ area of the corridor by the back door was wide and wheelie accessible, so the X8 could dry off in the centrally heated  house - and be fully dry before recharging it ready for more adventures. (Generally speaking, electrics and water don't mix!)

The next big use was a Boxing Day walk along the beach - Westward Ho!. Yes, it really could climb up the stone barrier!

But it was pretty tricky driving, and required me to do a fair bit of leaning to keep the balance, and once at the top I realised the downward section there was steeper, so I opted to go back down the way I'd come up, and go for the easier option of the ramp over the stones a bit further along the beach. It wasn’t really wheelchair accessible, but with a few well-placed stones to make the 8 inch initial step "X8 accessible", it was fine.

We then ran around chasing waves, throwing the frisbee, playing with the remote control car that could transform into a boat, and generally ambling along.







(Yes, I did drive into the water - a lake sized car-park puddle was irresistable. I had to be careful because salt water will make things rust quicker - and you can't power-wash an electric powerchair!)

Until it started to rain slightly...then - yells of delight - "It's SNOWING!"

Which lasted all of 10 seconds.

Because the hail arrived. Which sent us laughing, stinging, shrieking and freezing back to the cars, and the warmth of Hallsannery.

It was such a fabulous trip, and it made me fall in love with the X8 all over again.

However, it turns out that my waterproof trousers aren't so waterproof. Having sat in a puddle of melting hailstones for a while....let's just say, I was left with some unfortunate wet patches.

10/10 for the X8.

 2/10 for the waterproof trousers - which I will be retiring and replacing with a better pair forthwith.

(For more blogs about the X8, see our off-road adventures page.)