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!


Thursday, 5 October 2017

An apology to staff at Niagara Falls.

(Note: Maid of the Mist is the boat that takes you up to the Niagara falls)

Dear 'Maid of the Mist' staff,

On the 19th Sept, I visited Niagara Falls with a big group of friends, and we went on the Maid of the Mist.

It is a lovely place. As it was such a hot day, being out on the water, in the mist from the waterfall was even more special.

But I feel I should apologise to the staff.

I didn't mean to terrify you.

You see, as an experienced wheelchair user who is young at heart, I love going down ramps. While I will always be in control of my chair, I will also go pretty fast when I decide it's safe to do so. My gloves giving me excellent braking power while avoiding friction burns. If a 'down' ramp is immediately followed by an 'up' ramp I will usually try and use a bit of the down hill momentum to help me up the next ramp.

I was with a large group - who all know me and are used to my approach to slopes. They are used to my normal.

So I went down the ramp onto the 'Maid' in my usual manner. In full control, knowing I had the space I needed, hoping to use my momentum to get up the second ramp, thoroughly enjoying the experience, and forgetting that you weren't used to my normal.....

I didn't expect you to jump in my path to save me!

It was impressive - and although it wasn't needed, it did show you were totally switched on, which I honestly appreciate.

I hope you have recovered from the shock. You coped admirably - trying to adjust from 'full panic stations rescue mode' to 'calm, helpful, polite, assistance mode' at a moments notice is not easy, but you managed it - and even stayed friendly and helpful despite the scare I gave you. I'm sorry if I made your hair turn gray.

Next time I'll give more warning of what I'm about to do and hopefully avoid any further traumatisation.

And thank you for letting me bum-shuffle up the stairs so I could join my friends on the top deck, and to the captain for showing me the best place to sit - while making me promise sincerely I wouldn't move fast while on the boat. I don't think his heart would have coped if I had!

So once again, I'm sorry for giving you all such a scare, but thank you for forgiving me, for being such a lovely bunch of people, and for giving me such a lovely time.

Your sincerely,


Friday, 29 September 2017

Airport Assistance: London Gatwick and JFK New York.

Assistance on my outward journey really was a tale of two halves. It could just as well be called 'The good, the bad and the ugly."

Round 1: Wheelchair Assistance at London Gatwick
Check in bags. Then directed to the assistance desk 15m away.

Arrive at assistance desk.
Friendly confirmation of who I am, which flight I'm on, and what assistance I'd like.
Explained I could go through the priority lane on my own, and then visit the assistance desk on the left the other side, where they would sort out when I needed to be at which gate, and help me get there. Or someone could help me through security and to the second desk.

I chose to take myself through. Assistance chap took me to the right security lane and wished me good luck. All good. Staff didn't fuss about the extra, liquid containing medical stuff I had (like the cool vests). I was through in minutes and found the next desk easily.

The gate number hadn't been announced (I was early) so the desk chap told me what time I'd need to be back at the desk to be taken to the gate, and was friendly and helpful.

I then pootled off for a bit (the priority lounge which I'd booked was cool, quiet and had soft sofas I could lie down on) then returned at the allocated time. There was a queue. But desk chap recognised me at the back of the queue and said "it's gate -. If you'd like help, I'll sort it in a minute, otherwise we can meet you there."

I was doing well after my lie-down, and wanted the exercise (the floors at Gatwick are really easy to push on) so I opted to meet them at the plane.

Off I went, following his directions. I found the gate easily, got ushered to the front of the queue for tickets being checked, and into the gate seating area, where they said if I went to the front someone would be there to help shortly.

Sure enough, with plenty of time to spare, someone came over ready to assist me. The 'plane wasn't ready yet, so he checked he'd got my requirements right, and we chatted til we got the go-ahead.

I got on the plane first - taking my wheels right to the plane door, where I'd chosen to 'walk' to my seat which was very near the door. Assistance didn't bat an eyelid at my asking to borrow his shoulder for support, and asked which bags I wanted stowing where - so I even had my 'in flight essentials' bag  and my cool vest accessible - and my rucksack went in the overhead lockers.

Assistance chap leaves.

I was left feeling like I have been treated like a person, like a valued customer. (I'm sure they didn't get everything perfect, but when you see what happens next, you'll forgive any 'rose-tinted spectacles' aspects of the memory!)

Round 2: Wheelchair assistance at JFK New York.

Arrive. Plane empties. I wait for my wheelchair.

"Your chair is here"
I borrow the shoulder of an air hostess and get as far as past-the-chairs-and-nearly-at-the-door. Someone else has just sat in the airport wheelchair. It wasn't for me. "Your chair will be here in a minute".

I wait - but I've used up my limited walking and standing. So I slide down the wall I'm leaning against and crouch/sit on the floor.

Another chair arrives. "Here's your chair"

"That's not my chair - can't I use my own chair?"

"No - this is your chair, get in"

(Note: it is the end of a long flight, and a longer day. Speaking is really difficult and long sentences are impossible for me)

I'd been warned that despite the law allowing them to fetch your chair to the 'plane door like in every other country I'd ever visited, they tend to force you to use an airport chair - however unsuitable. I hoped this only applied to powerchairs. I was wrong. True, their laws means chairs have to be checked by customs - but how that equates to 'must go on a conveyor belt, and may not be taken to the plane after being checked' I can't quite fathom. I lacked the communication skills and brain power to force the issue. So I got in their chair. (If you aren't quite sure why 'not my chair' is a big issue, don't worry, I'll do a blog on it soon.)

It was nearly foot wider than I am. A heavy chair I couldn't even move. On my chair all bags attach to the chair, leaving one small handbag with passport, money and water bottle on my lap and my hands free. On the airport chair none of them could hang from it so they were all dumped onto my lap like I was a baggage trolley.

Assistance guy wheels me away.

We reach customs and go to one of the machines where you fill in loads of details on the screen and stuff. He filled it in on auto-pilot, only stopping to ask me whether I had a visa or a waiver etc. He then got stroppy that I didn't produce my passport immediately he asked for it - instead I handed over my plastic wallet containing passport and paperwork. Given that I was also trying to keep hold of the large rucksack, 3 small cool bags and handbag balanced on my lap, with dodgy coordination, I'm impressed I could get anything out of my bag!!

He answered the 'what do you have in your luggage' customs questions - without checking with me first. Clearly he must have been psychic. And then said "put your hand there"- indicating the fingerprint machine at a good height for standing people.

Unable to move my chair to a better angle, I leaned forward and managed to reach the plate -but the angle of my hand was wrong (and uncomfortable) - so I was just lifting my hand to position it better when Assistance says "no" and pushes my hand back down flat, holding it firmly against the plate. I stare in bewilderment at my hand now at a very odd angle, while attempting to shift my upper body into a position that will ease the discomfort (and dislocation risk) of the contortion. Unable to think up appropriate words for "Back off, and let go!".

The machine is satisfied and Assistance releases my hand.

Next: security - it goes fine. Security chap is respectful, polite, and quick (I think I got lucky!)

We approach the baggage carousel. I see my wheelchair about 15m away - waiting for me. Sitting in the middle of the floor like an abandoned suitcase. The relief!! I say "that's my chair, can we get it?"

"No, bags first".

He parks me by the carousel. Then walks off. Literally. Fortunately I'd been left next to someone from my youth group - who got my cases off the conveyor while I sat totally incapacitated in a wheelchair I couldn't move, buried under a mountain of bags.

I wait.

Assistance returns. "Is that your wheelchair?"

"Yes" (very relieved no-one else has walked off with it!)

At LAST I get into my wheelchair. Custom made for me. A chair that gives freedom rather than imprisons me. That minimises my pain. The relief is indescribable. I am no longer at the total mercy of an inconsiderate stranger who treats me like annoying baggage.

I spend a few minutes getting all my bags rearranged onto it. Blissful freedom at last.

I look round. He's disappeared again. And as previously agreed with the youth group (who all had their hands full of their own luggage), we are all making our own way to our meeting point. I'd booked assistance so it shouldn't have been a problem.

The relief drains away.

I return to my cases which had been abandoned by the carousel. I have no idea where Assistance went - or when / if he'll be back. I wonder if there is any way I can get myself and 2 cases to our meeting point. Or whether I should call someone from the group to return and fetch me (although airport staff might not appreciate them trying to get back in through the exit!)

The baggage hall is now nearly empty.

Assistance returns! At last!

"Are these your cases?"


He takes them and walks off at speed.

I follow. Trying not to get left behind. Not sure where we are heading as I have to concentrate hard on overtaking other passengers as my cases get further and further ahead. I struggle to catch up. No time to read signs or get my bearings.

Through a doorway - and into the familiar sight of an arrivals lounge. All the people with name signs, or craning forward to see loved ones. I've made it out.

The relief is short lived. My suitcases are hiking straight out of the airport doors. Will this be the last I see of them?

Summoning all remaining energy

He turns. Looks bemused - as if he can't fathom why I'm asking. Points ahead of him and says  "Outside".

Seriously? The assistance policy is 'Don't ask where someone is going, run outside with their cases and dump them'?

He comes back towards me looking annoyed at my interruption.

"Please take them through this door, then my group is the one on the left"

He wheeled my cases over there. And left.

I sighed with relief. I'd made it. I was back with people who treated me like a human.

I realise he might have been having a bad day, or a 'run off your feet' busy day - but the total lack of communication on basic points was....unparallelled. I've never experienced anything like it. Without spending any extra time and only minimal effort he could have said "your hand needs to be flatter against the plate to register your fingerprints" (No force required). And "I'm super busy, so I'll have to leave you by the baggage carousel while I fetch someone else, then I'll be back for you and your cases". He could have allowed me to switch to my chair immediately instead of making me wait for no reason (then I could at least have got myself to the loo while I waited!).  Oh, and "Where would you like me to take your cases - is someone picking you up, or would you like a taxi?". A little communication and respect would have transformed the whole experience.

And no.

He didn't get a tip.

Monday, 25 September 2017

A trip to the USA

I've been quite quiet recently.

Here's the reason: I was in the USA (Mostly in Connecticut and New York State) with the church youth group I'm part of.

It was exhausting, but fun.

I'm planning a few more detailed blogs on surviving the trip, my experience of UK (Gatwick) and USA (JFK) airport assistance, my trip on the 'Maid in the Mist' at Niagara Falls, and a few wheelie-related things about New York city.

In the mean time, here are a few pics from the trip.
(I'm not good at remembering to take photos - but I do have lots of good memories from the trip - which is the main thing, even if it doesn't translate well on a blog!)

 At Niagara Falls


At Letchworth State Park


New York City from the Staten Island Ferry.

(the 3 pics above were taken by people with me - I can't take the credit for them!)

Central Park

Tuesday, 22 August 2017

A day of pacing

The other day, as I filled in my pacing fridge magnets (available here) I thought I'd blog the way my schedule changed. I use my magnets on a board like this A3 magnetic whiteboard. but there are various ones available.

Below is the plan I put together the evening before. Actually it's the second attempt, because the first attempt included a morning full of red and orange. Which meant I realised it was too much before I'd finished it!

I like doing the first schedule the evening before, because I can usually tell roughly what 'shape' my symptoms will be the next day, and I go to sleep knowing that tomorrow is 'under control' as I wake up to a routine/schedule - and I don't have to schedule from scratch, think clearly and prioritise first thing in the morning!

How did I grade the activities? - By looking at what I currently find most exhausting - which is sitting still and concentrating. This is probably related to my POTS, but also sitting still aggravates my pain levels from my HSD too. On days like that, short tasks that involve a bit of moving about and minimal concentration are actually easier (long tasks that are active are a different matter).

At 10:00am I was on track. I'd achieved stuff, but not built up too many symptoms.

By 10:30 I'd realised the 'Challenging' - 'buffer' (writing my main social media posts for the next week) would take a lot longer, so I decided there were a few things I could move to another day - the pile of sideways activities at the bottom of my board - and I rearranged a few other tasks to give myself more time.

I then realised that the sunshine combined with a cool breeze meant it would be lovely to get outside, so I swapped colouring for 'easy gardening'. What is this? It's using my wheelchair to get outside, then sitting on the patio and pulling up the larger (easy-grip) weeds of a type that flourish in my garden and are REALLY easy to pull up by the roots. It gets me moving, takes no brain power, means I can quickly see results, without risking significant injury.

And instead of trying to schedule all my social media posts in one go (a 2 hour block of solid challenging brainpower which would wipe me out for the day), I'd do 30 mins, my timer would go off, I'd do a bit of easy gardening, then return for a bit more brain-work.

By lunchtime I was still on track with my adapted schedule and loving it. Yes, there were tasks I'd had to move to the 'another day' pile - but I didn't need to worry, because I knew they weren't essential today, and could be left for another day. Having them still written down also means I don't worry I will forget them.

Of course, other bits and bobs pop up. An unexpected (and long) work phone call etc. But by the end of the day, my schedule had been tweaked a bit more and looked like this. I'd achieved LOADS - but without feeling overwhelmed. And the things that hadn't got done were waiting for tomorrow.

On a different day, classifications of activities will be different. On a flop-day, reading is challenging - and writing coherent stuff would be impossible. Laundry (a short, minimum brain task - washer-dryer means no needing to hang wet washing out) was easy for today, another day this might be challenging. Similarly, on a bad day, basic self care items, like brushing teeth, getting dressed etc will appear on my magnets. But the concept remains the same - mix up the stuff that's mentally hard, physically hard, mentally easy and physically easy - making sure you move about frequently at what ever level works for you. Resting one part of you doesn't mean you have to lie down - just doing something different can be enough (e.g. doing something brain-easy after something brain-challenging. Or which uses legs instead of arms). I still had a few horizontal rest breaks, but walking to the kitchen and making a cup of tea after concentrating for half an hour is, for me, an excellent pacing tool. (on a bad day, 'move about' might mean lie down flat and gently stretch/move different parts of me - on a good day it might mean something a lot more energetic.)

I don't use the magnets every day, but whenever I start to feel my to-do list weighing down on me, or I've had a bit of a 'splat day' and am trying to get back into normal life, or my motivation is slipping, I get them out. Because they turn a mountain of tasks into manageable sections, help me keep the balance between challenging myself and respecting my limits, and I see my progress rather than only seeing the pile of tasks that still remain.  The magnets aren't there to dictate my next activity, but to help me make constructive decisions throughout the day. I'd look at the board to see what my next task was - but also to see if I thought it was still the right thing given current symptoms.

Besides, who doesn't feel better to finish the day with a happily coloured schedule that shows them everything they've achieved?

Tuesday, 8 August 2017

Are you an autism/disability ally?

I first encountered the terms "Autism Ally" and "Disability Ally" relatively recently. Where people who are not autistic/disabled use the term 'ally' to show that they are supportive of autistic/disabled people.

For some reason I didn't like the term. It felt unsettling. Like there was something slightly...wrong? - but I couldn't put my finger on it. So I kept quiet, figuring that at some point it would make sense.

Then in response to my "Is everyone a little bit autistic" blog post, an autistic person tweeted this:
My reaction was "Yay! I did something right!"

Which made me think - why did I react so negatively to the same term before?

Then I realised.

When someone with a condition that you don't have calls you an ally - it's like them saying "Thank you, you have done something helpful, I feel respected, listened to, and supported by you."

But if I were to say "I am an autism ally" - there is no verification.  No real world confirmation that my words and actions are genuinely supportive. Clearly I want to be an ally. But hand-on-heart well intended actions and words don't always equate to actually being an ally.

I know this, because I'm a wheelchair user and I often meet people wanting to show that they support me, accept me etc - who might consider themselves my allies. But very often, in reality, they aren't. They make a fuss when no fuss is needed, they barge past me to open doors I am perfectly capable of opening, they heap fawning praise on me for doing things that are totally normal (drinking a cup of tea, buying a T-shirt etc.), they tell me that they totally understand how terrible my life must be, or they get offended when I politely turn down an offer of assistance*. People react to me based on false assumptions and don't take the time to check whether those pre-conceived ideas are accurate or applicable. All of these interactions make my life harder - meaning I use precious energy fending off their advances instead of being given the freedom to get on with my life. If one of these people said to me they were a "disability ally" and would speak up for me, I would, quite frankly, feel moderately terrified about what misinformation they might be spreading - and how much more difficult they would make my life in the immediate future.

Their intention was to be an ally, but it came out wrong. They weren't my allies in reality. And they couldn't be my allies because they did not listen or take the time to find out what I needed before swanning in to my life, full of good intentions.

When someone claims to be speaking up or acting on my behalf, but actually aren't, and hand out misinformation instead, it's scary. Really scary.

The thought of doing this to someone else - stating that I speak on their behalf and then handing out misinformation, or stating that I support them and then doing really unhelpful things, is.....something I don't have words for, but something I really don't want to do EVER.

Now I know that I sometimes screw up with how to support/help other people with disabilities. We all do - and as I'm learning to be an ally, that's OK. Learners make mistakes, we learn from them, we do our best not to repeat that same mistake.

So I won't be saying "I am an autism ally" -because it may not be true - however much I want it to be true. Yes, I wrote a blog post that one person considered worthy of 'ally-ness' - but was my next action genuinely supportive too? The only people who can confirm or deny my ally-ship that are the people who's ally I am trying to be. Not me.

But what I can say is that I'm learning to be an ally. Sometimes I may mess up. Get things wrong. But then I will listen and do my best to learn and not repeat the same mistake again.

And I intend to keep learning for the rest of my life, because I think I can be far more supportive to others by constantly learning how to be a better ally, than I will be if I consider myself to have achieved 'ally-ship' already, and stop learning.

 (*Casually offering support if I look like I'm struggling is great - but refusing to listen to a 'no thank you' or trying to insist I accept help that I don't need is not helpful, nor is it respectful).

Note: I know not everyone will share this view, and that is fine - everyone is free to use the terms they feel appropriate. This blog is simply written from my perspective here and now - and it has allowed me to process and understand why I was so uncomfortable with the 'ally' concept.

Friday, 28 July 2017

The Status Squares are here!

Status Squares:

An innovative new tool to make invisible symptoms, visible.

We recently launched StatusSquares.

These wearable token units mean that needs and symptoms can be easily and effectively communicated, and as an individual’s status changes, they can be updated by flipping the token over, or swapping it for another token.

These simple units can help in so many different situations (at school, home, social event, medical appointment or work) and are relevant to many disabilities/conditions (fatigue, anxiety, autism, selective mutism, pain, depression - and a whole host of other conditions). 

Having a straight forward and effective way to show how you are, or what your needs are takes away the pressure of constantly having to explain or answer questions. A tool that allows you to show when you need time alone, or time to recharge and when you want company. 

In a school context, it allows teachers and parents to instantly see how the child is feeling/coping when they first arrive and put the appropriate support in place without the need to ask questions - especially as, when struggling, the effort of having to answer the questions can be enough to trigger a meltdown or worsening symptoms. 

They also allow children (and adults) with conditions involving pain or fatigue to communicate how they are without feeling they will be told off for 'complaining'.

And as your status changes throughout the day, the Status Square can be updated by flipping the token over, or swapping it for another token.
There are 2 main fastenings - a metal clip, or a sturdy badge reel with 40cm retractable cord and a belt clip, but they can also be used with lanyards, keyrings etc.

Made of medical grade plastic, with laminated vinyl latex stickers, the 'clip' versions are totally latex free.

We currently have 5 different double sided tokens, and the 2 different unit attachment options.

The Status Squares can be ordered here.

If you are interested in becoming a stockist, or placing a bulk order, please email us on admin@stickmancommunications.co.uk to discuss options.

Here's a clip of the squares in action:

Tuesday, 18 July 2017

Is everyone a 'little bit autistic'?

I have many friends who are autistic.

And I often hear people who are not autistic trying to show acceptance, and relate to an autistic person by saying things like "Yes, I'm a bit autistic too, because I don't like change/don't like loud noises/stim/[insert appropriate phrase here] too" or use the phrase "everyone is a bit autistic" to try and be inclusive.

Now here's the thing.
Loud noises make my spine cringe. If words are too loud I really struggle to understand what they mean. It's like I'm having to use so much energy up to cope with the loudness I can't focus on the meaning.
I have poor proprioception (I don't know where my body is in space when I'm relaxed). Pressure helps me know. So does movement. So when tired and trying to concentrate I may rock, or sit on my hands or on my feet, or wrap things tightly round my hands or fidget, or stretch repeatedly, or one of lots of other things that gives my brain enough input to stop having to work out where my limbs are so it can focus its fatigue-limited resources on more interesting things. Essentially: I stim.

Surely that makes me a bit autistic?

Actually, for me, they're part of my hypermobility syndrome.

I find it totally understandable that some autistic people stim, and it's something I can relate to, but I'm not autistic.
I wear ear plugs when I go to concerts, but I'm not autistic.

I am not on the autistic spectrum.

Because (as I understand it) the autistic spectrum isn't a spectrum from 'a little bit autistic' to 'very autistic'.

Everyone on the autistic spectrum is autistic. They have a different way of processing things to me (who is not autistic). The 'spectrum' part relates to individual variations within the autistic neurology (although there's probably a better way to word it than that). They each display different traits from multiple parts of the spectrum as part of their autism. For example an autistic person might avoid eye contact, or might make so much eye contact that the non-autistic feels uncomfortable. They might seek a certain sensory input or they might actively try to avoid it - thus making a broad spectrum of traits within the diagnosis of autism. Some traits might be mild or severe  (like obsessive tendencies, or level of verbal communication) but that doesn't make someone more autistic or less autistic. The autistic way of processing is there. It is a part of who they are.

Does my insight into living with poor proprioception mean I know what it's like to be autistic?

Because we don't experience life according to separate symptoms - we experience it as a whole being. For example, I experience poor proprioception alongside my ability to pick up non-verbal signals and hints easily. That means I don't know exactly what it is like to have poor proprioception and a limited ability to process non-verbal signals and hints.

Of course I use the insight from my poor proprioception to help me understand similar traits in autism, but I also need to step back and recognise that I'm not autistic so there will be differences.

"Everyone is a bit autistic" doesn't recognise the differences. It doesn't leave space for differences.

And if there's one thing my disabilities have taught me, it's that I can only flourish when I (and those around me) accept my differences - because then I can learn to live well with my differences. And you can't accept what you don't recognise exists.

So when I want to show that I relate to part of an autistic person's experiences I try to approach it from "That makes sense - I have [insert relevant trait] which has some similarities so what you say sounds familiar - but obviously it's not the same so there's a lot I don't understand."

Recognise the similarities and common ground, but also leave open, respectful, welcoming space for difference.

Because we aren't all a little bit autistic, but we are all human.

Thursday, 29 June 2017

Discovering the OneLeg stool

While representing the Hypermobility Syndromes Association at the Foothealth conference 2017, I was intrigued to discover the Oneleg stool.
It looks a bit like a mushroom, is designed to let you move easily when sat low down, and logic says it can't be very comfortable. However, as someone who does a lot better if I fidget when sat down I thought I'd give it a try.

Amazingly, this seat built to wobble feels really quite stable. It tilts - but in a controlled way. It's kinda hard to describe. It is much more comfortable to sit on than my wobble cushion - and gives a great core workout. It's also fine to sit still on. But instinct says "Fidget!! It's funner!" (it wasn't only me thinking this - the professionals who tried it seemed equally impressed. And equally keen to make the most of its capacity for movement while sitting still.). The one thing I couldn't do was slouch. I tried various slouches and every time I tried, my muscles kicked in and turned the slouch into a controlled movement - so it's a great deterrent against unwittingly flopping to end of range while sitting working (which is important for us who are hypermobile).

Seeing as the HMSA stand was next door to the OneLeg, I borrowed one and spent most of the morning sat on it. And when I did my lecture in the afternoon I sat on one instead of sitting in my wheelchair. It really helped with POTS management too - as I could keep my lower body moving enough to help improve circulation, without having to stand (which takes too much energy to be able to talk at the same time).

However, it should be noted that if you wiggle lots, then you really work your core muscles - and my hips and ankles too! So I'd strongly recommend building up how long you permit yourself to sit on it. It turned out that 4 hours on day one was a bit much - but I reckon if I bought one I would soon build my tolerance (and strength!).

My preferred height was the 48 inch. I'm quite long legged. I'd recommend trying various heights before buying if possible.

I now have this firmly at the top of my 'things to get' list - it will make a great office chair, and a way to strengthen my core. And when I have one, I'll be bringing it to events whenever I can - because being able to exercise while sitting really does help with managing my hypermobility syndrome and POTS.

(And no, I haven't been paid to write this. I just thought some of my readers might find it useful. I suspect it would also help with conditions like ADHD ;) )

Thursday, 1 June 2017

Communicating positively about hidden disabilities?!?

I often hear how important it is to be positive.

The thing is, that there are times we need the people we're with to be aware of symptoms - like fatigue, pain, dizziness, brain fog or any of the other multitude of things that can affect us in various ways from day to day.

It's not like we can start saying "Oh hurrah, I can't do that because my brain has turned to mush".

And yet....

I've seen peoples eyes glaze over when I talk about my current symptoms. I have even found myself unconsciously switching off when people have given me too much negative information. Which, given that I know what living with these symptoms...well, it was a bit unexpected!

It's as if the human brain has an automatic 'off switch' when too much stuff perceived as "negative" info is given resulting in none of then information I tried to share actually being taken on board - and a LOT of attempts to 'jolly me along'. "You can do this" "You need to be more positive" and the like. Which, of course, don't help - because they haven't actually taken into account the symptoms or limitations I've tried to tell them about!

So it looks like a 'catch 22'. Communicating about the symptoms is 'negative' and doesn't help. Not communicating about the symptoms means people get frustrated, have unrealistic expectations and can't understand why I can't do things.

Over time I've found a few ways to communicate in a more positive way - while still being very grounded and real.

For example:
"I am really fatigued. Struggling to concentrate. And I really can't sit still for long because of pain."
This is true. But it is all 'negative' information, and will probably fail in terms of creating understanding about my reality. I can't tell you the psychology of why, it's just something I've observed many, many times.

Here are some alternatives I've developed over time:

Option 1: Acknowledge the cause (it helps people build up an understanding of cause and effect - so over time they realise that busy today = symptomatic and quiet tomorrow, and puts the symptom into a wider context of 'doing' something - which also helps reduce the 'jollying you along' reaction.)
"I had a lovely day yesterday - got to hang out with some of my nieces in the morning. Now the fatigue and pain have hit, and I really can't concentrate for long. But it was worth it."

Option 2: Include coping strategies (it helps stop people panicking that you are just sitting there worrying about pain/symptoms all your life)
"I am really fatigued. Struggling to concentrate. And I really can't sit still for long because of pain - so I'm doing little tasks only, and lots of stretches, and using my heat pack - which helps."

Option 3: Recognise achievements based on what was challenging for you. (again, this helps people start to understand your normal.)
"I'm horribly fatigued and can't concentrate for long today, but I've managed to have a shower - so I'm really pleased about that."

Option 4: Include a 'can' alongside a 'can't'. (this helps avoid the 'encouraging' attempts that try and insist we do something we know we can't - or can't without unacceptable consequences - and has the added bonus that it's good practice for finding solutions and things we can do.)
"I can't sit for long - I'm in too much pain. But I can manage 5 minutes at a time, so I've been doing short tasks - and then changing position - I've achieved far more than I thought I would!" (I still can't believe how effective this position changing and regular moving has been for my pelvis/lower back pain).

And try to finish the update on a positive - which I've just realised I did in all these examples!

These don't create telepathy, or resolve every situation, but they have helped me become better understood by the people around me.

I hope that they can help you too.

Saturday, 27 May 2017

Disability: Appropriate offers of help

Friends and family often struggle to know when to offer help. Especially when it comes to variable and hidden aspects of disability - such as fatigue, pain, brain fog, or depression.

To me, as a person living with some of these symptoms, it feels obvious.

If I'm doing okay and managing a task (even if I'm doing it differently) then it's pretty obvious I don't need help. Being repeatedly offered help (or worse, given help without being asked) when I'm so clearly okay is SO frustrating! It takes away my enjoyment in being able to do it, it takes away my independence, and it makes me feel worthless. Plus I waste precious energy fighting off the offers of help instead of using it to do what I'm actually trying to do!

If I'm struggling, trying to push through nearly unbearable pain, unable to think straight, close to tears - then quite clearly an offer of help would be appropriate. And when people don't offer, it is like the seriously don't care that I'm struggling. Totally selfish. Like my needs are just not important at all.

But here's the thing I forget:

They are 'hidden' symptoms.

The foggly eyes and lightening strikes of pain so obvious in stickman are not visible in human. They are obvious to me. They might be so obvious it's hard to see anything else. But they are hidden from someone looking at me.

So if we translated those two scenarios into what it looks like to others instead of what it feels like for me, we get 2 scenarios that look nearly identical - a person preparing food. But in one the other person gets their head bitten off for offering help, and in the other they get their head bitten off for NOT offering help! This can result in the other person feeling like they always get it wrong, that their help isn't wanted, that they are worthless, that nothing they do is good enough - etc.  Is it any wonder that they can get frustrated and demoralized and stop offering help?

Realising this has helped me a lot. 

You see, remembering that it's not automatically visible makes me realise I need to communicate how I'm doing in order to get offers of help that are more appropriate - and acceptable.

Communication involves both people being on the same page - so having a conversation about the symptoms (and need for help) being variable and not obvious might be a good start. Or writing a 'dear loved one' letter or similar (see my earlier blog on types of communication)

And then find ways of communicating 'in the moment' where help is needed (or not) that work for both of you. Codewords can be very useful ("out of spoons" "Level 9 zombie" etc.). 

Personally I like things that 'Make the invisible, visible' - like flashcards or wristbands.

The important thing is that together you come up with a way for the 'foggly eyes' of stickmen to be accurately conveyed in Human - working together towards a future where offers of help are appropriate and constructive instead of a cause of friction and distress.

Thursday, 25 May 2017

What I learned from Deaf Awareness Week

I have a few friends on social media who are Deaf. Most of my understanding of being Deaf comes from them.

During Deaf awareness week, one of them posted a photo of this poster which he'd put in his office, next to a message saying come and talk to him.

(This poster isn't mine - I'm not sure where it originated from. I found it really helpful)

For 2 days he didn't get a single response. No-one came up and said hi.


In an office, with lots of colleagues.

As a chatty, hearing person, I would have chatted to lots of people. For him not a single person came and said hi - despite it being deaf awareness week and there being a special invite!


If that wasn't bad enough, other Deaf comment-ers were all totally un-surprised. Frustrated, but with a lot of 'well, that sounds normal'.

I knew that being Deaf in a world that relies a lot on sound must be isolating.

What I hadn't realised is that the isolation isn't so much caused by auditory issues, but by us hearing folk feeling too awkward or unsure to say hi, or too 'busy' to make the minor adjustments that would make chatting with them possible (see the poster above).

So I hearby promise, that should a chatting situation arise, and I discover that the other person is Deaf, I won't clam up and leave, but instead see if there are little adaptations I can make which will allow us to chat.

Don't worry, I'm not going to accost every deaf person I see and insist on patronising conversation when you are trying to do your shopping! But I will make the effort to remember the tips on the poster, and learn the skills to be able to chat, should it be a chatting situation.

Monday, 22 May 2017

A tip for wheeling in the rain.

It's a while since I've wheeled in pouring rain.

I quickly remembered that I do not like spending ages sat with wet knees. 

So, as I sprinted from parked car to station, rather smugly, I adapted my pushing posture. It worked! Dry knees......

..but within 2 minutes reality had seeped through.

I was sat in a puddle.

Take it from me: Wet knees is a lot nicer than.....the alternative!!

I'm now seriously considering investing in a wheelchair poncho of some sort.

Tuesday, 16 May 2017

The catch 22 of hidden disabilities/symptoms: Communication methods

It goes like this:

If I talk about my symptoms I am told I am being negative. That I need to stop focusing on my condition.

If I don't talk about my symptoms then people don't know how I am and therefore have unrealistic expectations - leading to frustration and misunderstandings at every turn.

It's a lose-lose situation.

However, there are various things that I've found have helped me get out of this loop.

One is to switch up the methods used. We are all familiar with the basic communication strategies, and for this blog I've categorised them as follows:

Written (formal)
Written (informal)
Code words
Visual cues
Decision making

Written (formal)
Medical letters, journal articles, official websites.
These are good for communicating with health care professionals (HCPs) who are interested in knowing more detail. (Note: it's best get a conversation going and build a rapport with the HCP before asking whether they'd be interested in a journal article you think is relevant - if you walk in and hand it over it basically communicates "You don't know what you're doing and I think you're stupid" - even if that's not what you mean!)
Be cautious about using these resources with friends and family. They can give information overload, on websites information is general - so readers have no idea whether you are affected severely, mildly or somewhere in between and may end up even more confused. They are more effective with people who already have a good grounding but want to know more.
Emergency care plan
Having emergency info handy is very useful. Even if you are capable of speaking, trying to cover everything accurately in an emergency situation is very difficult, having it written down clearly makes it easier for everyone.
Medical alert cards:
These can be great, but make sure the print on them is big enough to be read easily, and that they only give useful information. for example, they don't need to say "affecting 1 in 2000 people" because it's not useful info. And unless they are only for medics, avoid ones in med-speak because many people will have trouble relating to them. Doctors can understand normal English too.
Our keyring cards are actually more informal in the way they are written, but have had excellent feedback from use in both medical and social situations.

Written informal
Personal letters explaining how you are affected. 
Adapting a 'dear loved one' template letter from a relevant charity (such as this one on the HMSA website http://hypermobility.org/a-letter-to-a-loved-one/) can be very helpful in creating a background level of understanding.
This means you can explain how you personally are affected in a way that gives the reader time to process the information at their own speed.

Flashcards can also be a great way of communicating a key point about how you are or what you need - a way to make an 'invisible' aspect of your condition 'visible'. Our experience is that they work best if they are light-hearted, not too stroppy, and get straight to the point. At Stickman Communications we love flashcards (or keyring cards as we call them) - we have over 150 designs so far covering everything from autism to diabetes, from tourettes to fatigue and pain, from go away, to please help me. But you can also create your own.

One reason hidden symptoms like fatigue are so hard to communicate about is that unless you've experienced it, it's an alien concept. So explaining it in terms of something familiar can be very useful.
I use this 'shopping on a budget' analogy quite often.
Another popular one is the spoon theory (where a spoon is a unit of energy, you only have a few spoons, and each action you do uses up spoons)

Code Words
These are fabulous ways of communicating without sounding negative. "I'm out of spoons" or "Whose stolen my spoons!" are great ways of saying fatigue levels are high - if everyone listening knows the spoon theory! Code words are therefore best used within groups that know you a bit, or where people are familiar with the code word. In the online community of people with hidden disabilities and fatigue, the 'spoon theory' is so well known that most people will understand spoon references. but use it with family or colleagues and you are likely to need to give a full explanation.)

When I worked in an office, we had the 'Vodka Standard'. When my symptoms escalate, I get symptoms similar to being drunk (due to POTS). And if I get really bad, I need to lie down and cool down - but the symptoms mean I often don't realise how 'drunk' I am, so it was essential that people around me could notice and point it out. Instead of laboriously describing symptoms, things like "Hey, you aren't drunk today!" or "keep an eye on her, she's 2 vodkas already" were common place, amusing, and helpful.


A new colleague started in our section. Halfway through the day "You're drunk, Hannah. 2 vodkas?"
Horrified, my new colleague sat thinking that I was literally drunk at 11:00am, at work, and everyone was treating it like it was normal! - The code was explained and all was well, but it shows how important it is to use code words with care!

Visual analogies/illustrations
These can be graphic or descriptive. I love them. Because they communicate accurately, but with a slight chuckle which, as Terry Pratchett wrote, "helps things slide into the thinking".

 So when fatigue is so bad I can scarcely lift a finger, and I feel tetchy, grumpy and grey, it's a rhinoceros.

Or when brain fog has stolen my short term memory, word recall and general ability to function at the required level, the zombie references creep in.

The possibilities are endless and you can invent any that work for you.

Similarly Internet memes can be useful.  For example for those days when I feel a bit better than a recent hideous patch, but am still very symptomatic I might use phrases like 'fragile-ly fabulous' from this image:

But remember: 50 memes in one day trying to explain your entire condition will be overload and ineffective. One or two showing the key points relevant to that day is much more effective.

Visual cues
These are another one I love.  Flash cards can come into this category, but so do 'traffic lights' type concepts.

Like our 'traffic lights' wristbands, or wearing coloured badges with red meaning 'bad day' green meaning 'good day' etc. Things which communicate instantly with those who need to know, without any conversation having taken place. these can make life so much easier and remove the need for a lot of talking about symptoms while still letting people know how you are so they can adjust expectations accordingly. Even things like having a 'bad day' T-shirt that family knows if you are wearing it, it means you are having a bad day can really help.

It's important to remember that actions speak louder than words - so if you hide the symptoms that your actions cause, the people around you will never understand. How can we expect them to understand what we don't allow them to see? This is covered in a previous blog: 'when actions speak louder than words'

Decision making
In my experience, one of the hardest things is when I say 'I can't do that' for good reason, and the response from friends or family is to try and persuade me that I should do it. Sometimes I might be underestimating myself, but often it's a communication problem: they are unaware of the thought process behind the statement. Perhaps I know I'm really busy the day before and so will need recovery time. Perhaps there is something really important the day after which I need to pace to be able to manage. So by involving that person in the decision making process they can gain a lot of insight. And can also start to understand the barriers and even start helping think up things that will make things easier to do.

I might start off by saying "I'd love to join in, can you help me see if it's doable?" and then I effectively follow this process:

So in summary: 

There are lots of ways to communicate. If one isn't working, try another technique.

Creating understanding is like building a house, it's best done one brick at a time, with careful planning - each brick in place is a little bit of progress. Dumping a whole heap of bricks in one go just makes a mess.