Saturday, 17 February 2018

The importance of slowing down.

Something I've realised recently is that I often do things at speed.

I don't mean I run - but I often rush. Or even make the movements within the task I'm doing very fast.

And it's not just big things, but even little things like reaching for a cup.

I can go from resting to active in a split second.

I think it's a subconscious "I've decided to do it, so I'll get it done. Now."

But whatever the reason, my body doesn't like it, and it's really kinda unnecessary - so I've decided to put effort in to slowing down.

I think, for me, the effect is a combination things.

My POTS is very negatively affected by adrenaline. If I get a kick of adrenaline, if I'm lucky I kinda feel OK for a bit but later I crash out. Other times I might go a shaky and floppy and feel awful straight away for a bit. And sudden changes can put me into 'fight or flight' adrenaline mode.

Sudden changes of posture or speed or going still to active also don't give my autonomic system time to adjust properly - which of course also annoys my POTS.

In addition, because of my hypermobility syndrome, I injure myself less and am more stable when I move more slowly, and with an awareness of my body instead of just hurling myself at a task and hoping for the best.

Writing it on here makes it sound...well....pretty obvious. But like most things, it's kinda only obvious once I've realised it!

So here's to taking a slower pace, with a view to improving fatigue and injury management.

Saturday, 3 February 2018

Disability, 'ought to' and decisions.

Today I said I'd do some gardening with my Mum.

So I ought to do it.

I also ought to do the laundry as it's piling up.

And I ought to have a shower.

The list goes on.

But when I got out of bed I found I was weak and wobbly with fatigue. Not 'feeling tired' but being physically too tired to actually make muscles do what they need to do. So a simple 'sit to stand' which I can usually do with ease has become a significant, wobbly, challenge. If I'm gentle with myself it will pass - lots of rest and gentle movement.

So I made a choice.

There is no 'ought'. Only decisions.

And I have decided to do what will be best in the long run - what will enable me to be most healthy, and to get most done in the long run.

I can choose whether to do the gardening or not.

I would love to do it. I was really looking forward to it. But I need to recover first. If I go, my fatigue will massively increase and recovery will take a lot longer, I 'll be too fatigued to actually help much, and there's a very high chance I'll injure myself.

So I have chosen not to go. I've messaged Mum to let her know. She's fine with that, and hopefully we'll rearrange some time.

Laundry? That can wait. There are still clothes in my wardrobe.

Shower? I'll see how things go.

Because 'ought to' clouds my judgement. It's so often based on other people's (or even my own) unrealistic expectations.

Of course, sometimes 'ought to' might seem a good thing.

Today I really ought to pace myself, and recharge.

But if I pace just because I 'ought to' my day becomes a drag. A burden of having to do things - and having to not do things that I really want to do.

So I still have no space for 'ought to' to rule my life. It can flag up where decisions need to be made, but then I can choose. I ought to pace - but what do I choose to do?

Yes, I choose to pace today.

So I will. Because I have decided to.

And that is empowering and positive.

That simple decision means today isn't about being restricted by obligations, but about being empowered and proactively living well.

Because I have made that choice.

Keyring card with an exhausted looking stickman, saying "Sometimes I need to push myself to do more and other times I need to recharge. Right now I need to recharge. Don't worry. I am looking after myself and will be ready to face the world again soon."

Thursday, 1 February 2018

"Silent Witness" BBC Drama, disability, and my reaction.

The latest episodes of "Silent Witness" made compelling watching.
At time of writing it is available on BBC iplayer. Episode titled "One Day" (it is in two parts).

A story that was heartbreaking, but very well told.

I've tried to avoid spoilers here, but I do a reference something that happens to Clarissa - because it's important.

(This post might need a trigger warning for ableism. The program should contain TW for extreme disability abuse and rape - but I don't discuss either of them here)

For me, parts of it resonated. Resonated deeply in a way that I've never experienced with something I've watched on screen before. They were little moments that were such real parts of life with disability that it took my breath away.

I looked into the eyes of an actor, and saw my own fears and experiences.

No, no-one has ever tried to kill me - but there were two moments while watching Liz Carr as Clarissa which were particularly real for me. Too real.

One may seem insignificant.

The team were sat round having a discussion about the case. One chap had the attitude that it wasn't such a big deal as the people affected were disabled. He couldn't see anything remotely amiss with his attitude. He was completely unaware of his prejudice - and equally completely clinging to it. Clarissa was sat there. Tense. Then she caught the eye of a colleague, shook her head, mouthed 'I can't' to a supportive colleague, and left.

I've done that.

I've done that.

I was in a meeting where key people were discussing access issues - which had been rumbling along for ages. I'd tried everything I could to get one particular person to see me as a person making sensible suggestions, but all they could see was someone disabled, that it wasn't worth going to any effort or inconvenience for. Was I worth the hassle? No. Literally. Saying "We can't do that just for her". Her sentiments echoing closely the words in 'Silent Witness' - "We'll get the appropriate amount of resources on this." with the clear indication that 'appropriate' meant minimal.

During my meeting, I reached that point. I couldn't speak. Every fibre of my being wanted to scream my humanity, my intrinsic value as a person. But I'd already tried everything I could think of, and I'd watched others try without success too. The weight of words and emotions and injustice choked me. I had to escape. I had to breathe. I ....can't put it into words. If you want to know what it felt like, watch that episode. (a bit over half way through part 2). Watch Clarissa's face. The abrupt departure trying to remain dignified and professional while your internal world feels like it's teetering on the brink of collapse or explosion.

I've never seen it happen to someone else before.

And when I did, I didn't see an actor. I saw myself. In a situation all too real. I actually had to re-watch that section to check I'd not imagined it. And I doubt I'm alone in relating so strongly to a scene of such stubborn and total minded conviction that disability is inferior and disabled people are a burden.

The second bit that got me was when someone unhooks Clarissa's controls and wheels her down the corridor while she calls out for help. And no-one takes a blind bit of notice.

Now, I will make it clear that no-one has ever tried to kidnap or kill me. And lets face it, such moments of danger and drama are part and parcel of all crime dramas. And it wasn't when Clarissa was actually in danger that got me - it was that walk down the corridor.


Because I am wheelchair user.

As a wheelchair user, strangers periodically take control of my chair without permission - pushing me in directions I am physically powerless to change or stop, sometimes having ignored my explicit requests not to.

This has always been incredibly scary. A fear deep routed. Subconscious. Some recognition of danger that my conscious mind hadn't processed.

I watched Clarissa being pushed down the corridor, and I knew.

I heard her clearly stated wishes ignored simply because she was disabled, and I knew.

I saw another person physically take complete control of where she was going, with no more regard for her wishes or humanity than if she were a potato, and I knew.

I knew.

Because every time I'm pushed without warning, or without my permission, by a stranger, especially when I've specifically asked them not to, there is a part of me that fears my experience will echo Clarissa's. And what if Jack doesn't arrive in time for me?

And it is terrifying.

But they meant well, surely that counts for something?

Not really. No.

Someone moving a sack of potatoes to a 'more appropriate storage location'  is also well intentioned. Pushing me without permission (in any but the most exceptional of situations - like being about to be hit by a falling meteorite) involves the same amount of regard and respect for my life and my choices as you do a potato. And I am not a potato. I am a person.

All it takes to alleviate this fear is the knowledge that the person with me is listening to me, respecting me, and responding appropriately. The knowledge that they see me as a person, who's life is important and choices valid.

Such a small difference - and yet so significant.

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.