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:

"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?
Box 2: Given current symptoms, will I be able to complete the task?
Box 3: Is there enough recovery time between now and when I next need to function?
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?
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?
Box 3: Is there enough recovery time between now and when I next need to function?
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?
Box 2: Given current symptoms, will I be able to complete the task?
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?
Box 3: Is there enough recovery time between now and when I next need to function?
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.)

Tuesday, 21 November 2017

When fatigue steals your ability to manage your fatigue.

Image description: 1. Stickman realises fatigue (cloud) is creeping up. 2. stickman trying to thing up a sensible management plan, while fatigue cloud reaches into stickman's ideas. 3. Fatigue steals ability to plan and leaves fog behind. 4. Feel worse, can't work out how to improve things. 5. Crash.
Isn't it ironic. When you most need to think clearly you are least able to.

My classic one is when I overheat. Because of my POTS my fatigue builds rapidly when I'm too warm, as does brain fog. The brain fog means I don't realise I'm too hot, nor that I should do something about it. I wondering why I feel worse and worse until I crumple into a flollopy mess, where I stay. Unable to work out how to improve things. Until someone asks me why I'm wearing a jumper (called a "sweater" in American) or tells me to put my cooling vest on (or something similar). Or I have a flash of inspiration that makes it through the fog. I've lost entire days to hideous fatigue and brain fog just because I was wearing a jumper . Pre-diagnosis, and in the first few years post diagnosis I probably flolloped for whole weeks because of this.

Now I have pre-arranged recovery plans.

Image description: 1. Stickman realises fatigue (cloud) is creeping up. 2. stickman trying to thing up a sensible management plan, while fatigue cloud reaches into stickman's ideas. 3. Fatigue steals ability to plan and leaves fog behind. 4. Follow pre -arranged recovery plan. 5. Escape the crash. (Note: Unforeseen or unavoidable circumstances can mean the crash still happens, but the recovery plan will help make it shorter.

When fog starts to build more than expected, take jumper/blanket off, pop outside/somewhere cold to see if it helps.
Move. See if getting the blood moving helps.

And if these don't work I switch to 'recovery plan' (some people also call it a 'Flare-up plan'
Lie down. Properly. So head is level with or below the level of my heart (again, this is a POTS management tool - getting the blood and oxygen back to the brain).
And switch to 'light duties' only, no big concentration, favourite music/DVD, bits of colouring/jigsaws, frequent short stretching & gentle movement, no vigorous exercise, minimal food prep, Eat food my body finds easy to digest (carrots, tuna, eggs, crisps, well cooked greens, soup), make sure joints are supported and not flopped to end of range.

This routine helps me get back on track. I might have tasks I have to complete - but then I return to this routine until the fatigue lifts back to normal levels. Recovery is a lot quicker when I follow this plan. Even quicker than it does if I simply curl up on the sofa and don't move all day (periods of sofa time are fine, but my body does better with lots of small bits of gentle movement). Because it's kinda 'established' I don't have to work it out. True, I still need to realise I feel awful, but having the plan literally written down and stuck somewhere obvious (like on the fridge) can be a real help. As can letting people around you know the plan and asking them to remind you if needed. Even people who are 'around' on line can help - I've lost count of the number of times I've been text-chatting, and the person I've been chatting to has noticed my typing accuracy  and coherence decreasing, and have asked "Are you wearing a jumper?" :D If my clarity of thought has been stolen by fatigue, using someone else's seems a really good idea!

(the specifics are what works for me - everyone will have different specifics, but having an emergency plan is something I'd strongly recommend to anyone with a fatigue-causing condition)
But what I love doing (and need to do more) is the 'cunning plan'.

Image description: 1.Know extra fatigue will try creeping up. 2. Make a cunning plan in advance. 3. Fatigue can't steal your plan. 4. Follow plan. 5. Escape the crash. - note: unforeseen or unavoidable circumstances can steal your cunning plan. In which case, use the parts of the cunning plan that you can, and switch to the recovery plan as soon as possible.
This is when I know that the tasks for the day will increase fatigue, so I actively plan my day (often using the pacing magnets), complete with phone alarms and desk alarms for: swapping activity (see 'swap don't stop' blog post), meals, rest periods, snacks etc.

And writing down my To Do list in sections of easy/OK/challenging - and mixing it all up throughout the day so I don't overload with challenging and drain my precious energy too quickly - shifting things to tomorrow if I realise it's not realistic to do it today.

I get so much more done on these 'cunning plan' days - and I feel so much better at the end. Fatigue won't stop the sensible decisions because I've already done the main thinking AND the cunning plan also reduces the level of fatigue that I get. Win-win!

Of course, unavoidable things happen. Illness, flooded kitchens, social events. If we know in advance it's worth putting a cunning plan into place to minimise the fatigue (I always do cunning plans for big social events, with things like where and when I can sneak out for a lie down, I take snacks, stick to easy-digest food, take my cooling vest and wear it if other people take their jumpers off.)

And the unexpected stuff that totally steals the plan and the brain? Well, don't beat yourself up. It happens to us all - the recovery plan is there to help pick up the pieces without needing lots of brain.

Wednesday, 1 November 2017

Buses, buggies and wheelchairs

Yesterday I travelled to London by train, then across London by bus. This 3 buses there, and 3 buses back.

That's quite a lot of bus!

The journey out was uneventful.

The journey back was another story.

At the bus stop there was mum 1 with a buggy waiting next to me, for the same bus. We chatted a bit.

The first bus wasn't very full, and the wheels space was empty.

As she got on, she asked the driver to put the ramp down for me.

"No, sorry. We can't have a buggy and a wheelchair on the same bus."

"But we can both fit safely!"

"Nothing I can do. It's company policy."

Mum 1 started to get off the bus so I could get on, willing to stand in the cold for longer for my sake - but given that she had a young child, and I had ages before my train was due, I decided I'd wait for the next one.

I waited.

The next bus to arrive already had a buggy on. Fortunately the driver didn't bat an eyelid, let down the ramp, the mum shifted the buggy so we shared the space quite happily.


I reached the next change-over point without problem.

The next bus arrived. I'd been communicating with mum 2 with a buggy through gestures (I'm not sure whether her English wasn't good, or she was hearing impaired, but either way: gestures worked) we were both awaiting the 29 bus, which was, at last, approaching, and fingers crossed we could both get on.

Mum 3 with a buggy was already on the bus. The ramp came down and as I went up, the driver checked which stop I wanted to get off. Being me, I couldn't remember! It was half an hour away and I'd planned to check my phone to remind myself once I was on the bus. I settled into my space without problem - the buggy was moved to let me in.

As we drove off I realised that I'd inadvertently left mum 2 at the stop. I felt bad. Disappointed for her, and hoping that she and her child wouldn't get too cold. I didn't hear anyone ask mum 3 if she could fold her buggy, nor asking mum 2 that same question.

3 minutes later at another stop, the driver popped back to where I was sat and checked which stop I was headed for. I'd worked it out by this time, so I could answer.

All was going well.

Until 10 minutes later he pops his head around my corner again "I'm really sorry. Our schedule has been changed and we have to terminate at Mornington Crescent -a few stops before you want to get off. Will you be OK from there?"

I checked the route of my next bus - it had a stop 20m from our terminating stop, so it was actually fine. But it was really nice - and reassuring - that he took the time to check I would be OK rather than just kicking me off. Looking back though I feel a bit strange. He treated me so well - as a disabled person I was clearly high priority - which is a big change from the second-rate treatment we often get (access to posh venues through the bin stores, being a speaker at an event where they forget to make the stage accessible, being treated as if asking for access is a nuisance etc), but at the same time we'd left mum 2 behind, and the same effort hadn't gone into finding a solution for her.

I was left thinking:
1. What really is the policy/procedure for carrying buggies and wheelchairs on London buses? Can they take more than one at once? The variation between drivers means the policy isn't clearly understood by them all. And if it really does only allows one buggy OR one wheelchair, it's a bit daft (I say this as a retired Environmental Health Officer, qualified to enforce health and safety in various places, as well as a wheelchair user.)
2. Being left at a bus stop because a small child is in your space sucks.
3. Leaving a small child out in the cold because you are in the space they need also sucks.

Yes, driver training might help, but I think perhaps what will help most is a pragmatic and practical policy based on 'how can we safely fit the maximum number of wheelchairs AND buggies onto our buses'. Not 'which takes priority', but 'how can we take everyone.'

Except at rush hour when the bus is fit to burst and people have to be left behind -wheels or not. Then, perhaps, the answer is more buses at that time of day.

Tuesday, 17 October 2017

Pacing, disability and illness.

As a general rule, I don't refer to my disabling conditions (HSD, POTS etc) as being ill or being sick.

Why - when they can make me feel so very ill?

Because if I see my normal as 'ill' then when I get a common illness (cold, stomach bug etc) I find it harder to have sensible strategies for dealing with it.

For example: I currently have a cold - with all the standard symptoms.

But in addition, when my body is fighting an infection my POTS is worsened too and I get a racing heart and horribly dizzy every time I cough. And the fatigue makes joint control and EDS management more difficult - everything kind of plays of everything else. Unfortunately this means that mild infections that many average people could 'take some meds and power through' really knock me down.

My normal pacing rules are for 'healthy me'.

I have different rules for 'sick me'.

So right now I'm operating on sickness rules.

This includes: blankets. TV, Kids DVDs, or 'pride and prejudice'), naps, lots and lots of tea, carefully chosen meds, that don't mess with my heart (no standard cold meds with phenylephedrine!) and time off work. Because experience says this helps me get over it and back to 'healthy me' quicker.

And as a result I don't worry that my POTS and EDS are worsening - I can have a sulky moment about having a cold and feeling rubbish, safe in the knowledge that it will pass, and I will start to feel better again soon - and at that point I will switch back to 'healthy me' pacing.

Ok, so I'm writing this which is technically work.

But this is all I intend to do today.

Because I'm ill.

And taking time off work when I'm ill is a very constructive thing to do.

[Note: This works for me, with my combination of conditions. It won't work for everyone.]
[Also note: This won't affect orders from our shop - because I have a very handy PA!]

Friday, 13 October 2017

Rochdale Autism Conference

Yesterday we were at the Rochdale Autism Conference with our stickmen.

Although the lecture room was too hot to get more than a few snippets of 2 of the many talks, I was impressed with what I heard.

There was one about body language - I heard the section on eye contact. Rather than saying 'teach them to make eye contact' it went through some of the unspoken and unconscious 'rules' that many NT's know by instinct but aren't always conscious of, like that if you look anywhere in the triangle between tip of nose and outside of eyebrows (including they eyes) - that communicates interest and listening. Looking at the mouth is flirting behaviour - or means they have spinach in your teeth or are lip-reading. It really highlighted the importance of not trying to force rule-compliance, but creating rule understanding- and also realising that we don't have to make eye contact - focusing on the bridge of the nose, for example, can be just as effective in communicating that interest. (at this point I melted and had to leave)

The talk by Ros (an autistic woman) was brilliant - very real. Pointed out the absurd communication contradictions "would you like to sign in" means please sign in or I'll get stroppy. But "would you like a cup of coffee" 30 seconds later means "you can if you want, but you don't have to". - but how is she supposed to know when it's giving an option and when it's a 'polite' demand? - which NT's just seem to 'know'. Because the NT's automatic is an autistic's conscious and constant learning process and logical 'working things out'. Similar issues with deciphering 'can you' - is it an "are you theoretically capable of it" or a request that you do it now?

She also covered things like how dealing with money in the classroom was fine - she was good at maths. But in a shop? - not a chance. one mars bar is 50p, the change from £1 will be 50p - she knows this - put mars bar on the counter...and it becomes a social situation 

"isn't it lovely weather" 
...where did that come from? What has the weather got to do with the cost of a mars bar? 
"Would you like our carrier bag?" 
why are they asking for my opinion on a carrier bag? Do they mean do I like the colour, or the design? Is it some new marketing campaign that they are researching? If I say no, will they get really upset? 
- all these thoughts and processing taking up the space needed for processing the actual transaction she came to complete and creating a very stressful situation.

She spoke about how these situations aren't things autistics are incapable of understanding - but that they all need to be consciously learnt - rather than instinctively picked up. Which takes masses of energy and concentration - and can also come with a feeling of huge pressure to get it right because everyone else seems to get it so easily - and a sense of failure when they get something wrong that everyone else finds obvious. 

As a non-autistic, it was both refreshing and eye opening to hear about autism in a way that was so real, and practical and lived. I wish I'd been able to hear her whole talk, but the heat said no so I had to leave for somewhere cooler to lie down.

It made me realise how vital it is that I am direct and clear with how I say things. And not to underestimate the energy expended by an autistic person navigating social interactions.

They also had a group of autistic teens talking about their experiences. I didn't hear this part but the feedback I heard about it was great.

And from a stickman point of view - it was good. The only downside was that the room with the exhibitors in was small and got really crowded. I think a lot of autistic visitors didn't make it into the exhibitors area although a lot of the professionals did.

Having said that, we had lots of people discovering our resources for the first time. And lots of great feedback - especially on the status squares, wristbands and keyring cards.

We had one fascinating incident where we tried (I'm not sure how successfully) to explain to a non-autistic adult that stickmen weren't just for primary school children, but were designed with teens, and adults, and that the colour and humour helped break down barriers and assumptions - making the cards more effective. We know not everyone likes the colour and simplicity - that's fine. We all have to find what works for us. But this individual firmly believed that no autistic teenager would use them. A little voice of doubt started to question my work. Then an autistic teenager came over - and went flappy at the 'Go Away' card - which was actually borrowed later in the day (with a lanyard) after an overwhelm happened, and they'd recovered enough to go in and listen - but were not ready to interact with people. 

All in all an exhausting, insightful, and worthwhile day.

Sunday, 8 October 2017

Autism and adapting the language on our cards

This is not a blog about what language should be used.

It is a blog about some changes we are making to our cards in response to customer requests.

During initial card creation (in consultation with autistic people) 'person with an autistic spectrum condition' was chosen as it includes those who are on the spectrum but don't identify as autistic. Since then, it's become clear that lots of autistic people - including all my customers that I've spoken to recently - prefer "I'm autistic" - and that not all cards need to mention autism.

So we are re-wording some of our cards to try and find the right balance. On cards likely to apply to people who don't identify as autistic we are trying to change the wording to make them generic instead of autism specific, and changing autism-specific cards to read "I'm autistic". Below are the cards which currently mention autism specifically, and the changes we are suggesting - but before we finalise them over the next few weeks/months, please let us know your thoughts by commenting on this blog post, or replying to the relevant posts on twitter or FB. We won't be able to do what everyone suggests, but we will take all views into account as we come up with the final versions.

1. Current ASC eye contact card:

Suggested edit: "Please don't worry or take offence if I don't make eye contact - I find it difficult and it can make it harder for me to follow conversations or process what is happening." (So it becomes a general card applicable to anyone who struggles with eye contact) (I would be especially interested in feedback on this re-wording as I suspect there are other reasons eye contact may be difficult too so I need a bit more input to make this the best it can be.)

2. Current "Autistic, not naughty" card

Suggested edit: 
Replace the first sentence with: "My child is not being naughty, they are autistic." (rest of card to remain the same.)

3. Current 'Overwhelming' card

Suggested edit: "I'm autistic and find this situation overwhelming. Please let me have the time and space I need to calm down." [Edited to add: This is already also available as a general card with no reference to autism]

4. Current: "Don't stand to close" card

Suggested edit:
Replace middle sentence with: "I am autistic." (the rest of the card to remain the same. - this card is also available with no reference to autism)

5. Current ASC disclosure card:
Suggested edit: Replace first sentence with: "I'm autistic." (the rest of the card to remain the same.)

6. Current ASC new routine card:

Suggested edit: Remove 'I have an ASC' - and leave the rest of the card so it becomes applicable to all conditions where new routines are challenging.

7. Current ASC Personal Assistant card.

Suggested edit: Replace first sentence with "I'm autistic" - rest of the card to remain the same.

If you are autistic, on the spectrum or not-autistic-but-would-find-these-useful, please let us know your thoughts.

Thanks in advance!