Tuesday, 17 April 2018

Symptom diaries: Are they worth doing?

Every time a medical professional asks me to write a symptom diary my heart initially sinks.

The thought of having to focus on my symptoms and write them all down is just depressing and feels pointless. And it's not like writing them down is going to change anything is it!

However, they can be useful. Here are my tips for making it a useful and positive thing rather than a depressing one:

  • Record both activity (including food if it might be relevant) and symptoms.  The fact you felt rubbish on any particular day isn't very helpful. But the fact you felt rubbish the day after having to stand around a lot is helpful info.
  • Look for patterns. Good patterns as well as bad patterns - whether it's 'I seem to sleep better  if I do those exercises before bed' or '3 hours of concentrating leaves me totally splatted'!
  • Make changes based on the patterns you've spotted. If something always makes you worse, look at what you might be able to change about it that might help. If something helps, see if you can use that technique at other times too.
  • They can be words, but they can be graphs, diagrams or images too.

Graph showing my fatigue/flop levels, with the top of the page being 'fine' and the bottom 'legless drunk' (which is how my PoTS presents when bad), and along the bottom or the page the type of activity (sitting, standing, walking, chatting, eating etc) And the wibbly line of the graph shows how my symptoms are affected by things.
Things like this have helped me to realise things like that a short lie down when symptoms are bad can make a really big difference, and that talking while standing is something best avoided on all but the most fabulous of days.

And yes, I know the readability of that image is poor, but I wanted to show a real activity and symptom diary I drew. Not a 'produced for the internet' shiny perfect one. Because symptom diaries aren't going to be glossy and neat most of the time. They are real, and wobbly, and tea stained.

One of their most useful uses can be communicating with health care professionals - especially about long term hidden disabilities / invisible illnesses.

Never underestimate this use.

An HCP will have had lots of people come in saying "I'm so fatigued" - and some people mean they are tired. Or feel a bit bleh. Others will mean 'I can't function'. It's very difficult in a 10 minute consult for an HCP to work out exactly what you mean by 'pain' or 'fatigue', and exactly how much it is affecting you.

In addition, spoken words can be harder to process accurately than written words. With spoken words we seem to remember our interpretation more than the actual words used....which can be problematic.

With an activity and symptom diary, by simply handing it over you can communicate:
- exactly what effect things are having on your life
- that you haven't given up.
- your proactive self management steps (like recognising what makes you worse, and trying to tweak things to see if it helps). This is perhaps one of the most important things to communicate because when an HCP can see the patient is willing to put effort in, it motivates them to put effort in too. (Perhaps this 'shouldn't' be the case, but realistically, as human beings, this is pretty much hard-wired in)

And it does all this without you sounding like you are complaining, and in a way they can put on their notes so that section of notes is totally accurate!

A symptom diary is not a totally magic cure for all miscommunication and misunderstanding, but it can be a very helpful tool.

If you want somewhere to start, have a look at our exercise effect table - available from our website as a free download ( http://stickmancommunications.co.uk/Problematic-Exercises-form-download) or as a printed sheet (Problematic Exercises form Paper Version http://stickmancommunications.co.uk/Problematic-Exercises-form) - it's a great way to start this communication process with an HCP who wants you to exercise more at the same time as helping you find out what level of exercise actually works for you. The idea is that you write down what exercise you did and how long for/how many, and what the effect was. If the effect was too bad, you wait til you've recovered, then try a smaller amount/easier version. If it was easy, then you try more/a harder version - and keep recording what you do and how you respond.

So in conclusion, while I still don't like being asked to do a symptom diary (because it does take time and effort) I also love them for how useful they are in helping me to self manage and to communicate effectively with HCPs, and think they are well worth the hassle of completing.

Tuesday, 10 April 2018

Disability Stickers

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

These include:

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

All these stickers are on our website: http://stickmancommunications.co.uk/Stickers where you can also see more information on the types of fixings available.

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

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

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

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

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

Friday, 30 March 2018

My kitchen's a mess, and that's okay.

My kitchen is a mess.

It gets messy whenever I have a busy patch. Fatigue means I can't do everything I'd like to be able to. So it's normal for me that during a particularly sociable week, or one where work is more demanding than usual, housework doesn't happen.

This week's mess is because of a cold. Yes, it's just a cold. And not even a particularly bad cold.

But it interacts my PoTS in a way which makes my fatigue have a party.

As a result I'm curled up at home while my kitchen gets messier. I could possibly have managed it as my task for today, but I really really needed a shower. Now I'm clean - which feels amazing, but my entire available energy has been used.

But it's okay. As my cold goes and my POTS settles down I will sort it. Perhaps a bit at a time. It's not lazy. It's not shameful. It's a messy kitchen that is going to stay messy until it gets tidied because my top priority is getting over this cold without aggravating or worsening my conditions any more than necessary.

And actually, I think I'm going to buy some disposable plates and bowls when I next go shopping so that when I'm next a fatigue zombie I can eat without creating dirty dishes!

But until then...


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.