Wednesday, 12 August 2020

Trouble noticing (and managing) my symptom levels.

I am not always very good at this. I know the theory, but that's always easier than actually doing it!

I get too focused on what I'm doing so I don't notice symptoms - even if they are quite obviously getting in the way! I can even be so busy coping with pain that I don't think to actually do anything about it. I forget to step back and ask myself what I actually need to do now. The answer could be 'stop', 'move', 'take meds', 'cool down' or 'eat' -or a huge range of things.  I can practically guarantee that the answer will not be 'carry on ignoring it all' even thought that is my default approach.

I suspect there's a subconscious dose of the highly unhelpful "if I don't try and push through, then I'm not trying hard enough" and "I've had symptoms worse than this before, so just keep going otherwise you are making a fuss" in there somewhere. 

Over time I have got better at double checking. For example I've learned that if the left side of my face goes numb I NEED to lie down immediately - no excuses. And that whenever I think "Come ON! Focus!" I've trained myself to make my next thought "If I'm struggling to focus, do I need to manage symptoms before continuing?".

This week I have found another thing that helps. Our new reversible 'Now is' wristbands

Close up of person with their hand in their pocket, wearing a wide red wristband that says "Now is tough, but it will improve"

They were designed to help communicate symptom level to the people around us - so we can be understood and supported without symptoms becoming a constant topic of conversation. However, I was having a rough day when they arrived and decided to wear one - despite the fact I was on my own.

I found it reminded me to check in with my symptoms, and to manage them.

I would catch site of the orange band and find myself thinking "Oh yes, I'm quite symptomatic today. Am I still at amber, or should it really be red now? Should I be doing this task? What do I need to do to look after myself? Are my expectations reasonable given I'm at amber?" 

2cm wide silicone wristband. Red outside with text "Now is tough, but things will improve." Inside orange with text "Now is not too bad, but I need to be careful".

It was as if the visible reminder that "I need to be careful" made it OK to actually be careful and look after myself. It also made me notice sooner when symptoms had escalated and I was struggling - needing to flip to "Now is tough". There were times when I couldn't instantly take the break I needed, but just flipping the band over to red took the pressure off - helped me stop stressing for not doing what I felt I 'should' be doing, or for being slow, or struggling with words - or any of the other mass of things that happen when symptoms are playing up. It helped me change my thinking from "Why are you being so feeble??" to "Your symptoms are playing up, so take it slow and have reasonable expectations of yourself".

I've worn it several days since then and have found it useful. It is now a standard part of my 'fragile day plans'.

Tuesday, 21 July 2020

Do I need food or movement?

I think this is a PoTS thing, but I have no specific research to back up my opinion so it could equally well be a 'Hannah' thing.  (PoTS: Postural tachycardia syndrome - see PoTS UK for more info)

Either way, sometimes I crave sugar - cakes or biscuits, but what I actually need is movement.

Written down, this seems improbable. Why would I think I'm hungry because I need to fidget?

This is my theory:

PoTS = slightly reduced blood flow to the brain after sitting still for a while (it pools instead of circulating as designed). Not enough to make me faint, but enough to cause fatigue and make concentration difficult.

Sugar = energy. A quick, easy, boost which requires very little digestion. An 'kick' of energy that won't last long but will make me feel better quickly, masking other issues.

Movement = increased muscle tone, improved circulation, and thus more blood (and oxygen) up to my brain. And then I feel alive again. I don't need an energy boost because the underlying issue has been resolved.

Not all movement has this effect. Shuffling zombie-style to the kitchen doesn't (not enough of a circulation boost?). Nor does suddenly leaping up and waving my limbs about (sudden postural changes aggravate my PoTS.) The 'right' movement for me in this context is....a mix of ballet, contemporary dance, yoga, and pilates in slow motion. Movement that is slow and controlled, and involves getting as many muscles as possible properly engaged. Core, calves, quads, biceps, intercostals, right down to fingers and toes.

On the other hand, sometimes I genuinely am low on energy and the dance does nothing but make me hungrier - a snack is absolutely what I need.

As a result I'm trying to do a short dance before snacking. My dance earlier today (which reminded me to write this blog) was definitely a 'Movement required' moment. And the movement boost lasted much longer than sugar would.


So if you see me dancing in my kitchen, or wriggling contemplatively in the bakery aisle, don't worry - I'm just trying to work out if I need a doughnut or a dance!

[Image description: 3 images of a white woman with brown hair and glasses standing in a kitchen. Image 1 - facing sideways, with feet apart ('lunge' style) back upright, arms stretching forward. Image 2: facing sideways back arched, arms stretched down and backwards. Image 3: facing the camera, legs together, leaning to her left with left arm outstretched.]

Thursday, 16 July 2020

Charlie & the C Monsters!

When Ju90 from Together!2012 got in touch about commissioning a stickman comic that communicated how COVID19 could be transmitted, how to reduce the chance of getting sick, and what some of the symptoms were, all without text to make it accessible, I was hardly going to say no!

It's been a huge amount of work, but incredibly rewarding, and here is the result:

Standard version:

Audio described version:


See more info here, including a downloadable 'comic book' style one that can be printed and coloured in too!

Saturday, 4 July 2020

Getting my wheels back

[Smiling white woman with shoulder length brown hair and glasses,
 wearing blue leggings and a green top, sat in a wheelchair.
Early on in lockdown my every-day wheelchair got a flat tyre - the kind which goes flat again within minutes of being pumped up. Not only that, but I realised that both were almost completely bald and the blue innards of the tyre were starting to show through.

This is a relatively easy fix: call to the local bike shop, and it'll be fixed within 24 hours.

Only COVID19 meant our local bike shop is extremely busy, and the demand for everything bike-related has massively increased. Including the demand for tyres.

I'm lucky in that I have 2 other manual chairs

  •  a foldable one that I can foot propel in (i.e. walk myself around with my feet) which is my usual 'inside the house' chair because it makes carrying stuff easier. It's really uncomfortable though as the seat position makes my pelvis shout if I sit in it for more than a couple of minutes. 
  • a second hand rigid frame cyclone - sturdy, with BMX tyres, over 20 years old, with worn bearings and lots of squeaks. It's heavy going to push. I rarely use it unless going off-road somewhere that I can't take my powerchair.
So life outside my house has been a lot harder - things like trips to the supermarket and going for a 'walk' to get some exercise. And much higher pain levels after going out-and-about. But I got used to it. It was much better than being completely house-bound.

And then last week I got my wheels back. All fixed. 

It was....beautiful. I had forgotten how liberating and joyous a well-suited chair is.

To sit in security and comfort, able to turn and move with the lightest of pressures. 

Have you ever roller-skated on gravelly tarmac? Where it's really hard going, and each push seems to hardly get you anywhere? And then suddenly switched to a perfectly smooth, wide space? And suddenly it is gloriously smooth and you feel like you could skate to the moon and anything is possible? Well, getting my chair back was like that. 

A moment of pure joy. Overflowing thankfulness for my chair.

I am one of the lucky ones. I have a well fitting chair. And I have back up chairs. For many people unsuitable chairs are all they have access to - in many places what the NHS can offer is so limited, even with the voucher scheme, that unless you have at least £1k to put towards a chair you can't get the right one for you.

The right wheels really are life changing.

Monday, 22 June 2020

Product idea: reversible 'today is' wristband

Many of you will have seen our 'today is' pack of 3 wristbands. We are at the point of needing to do a reprint, but we are considering a redesign instead.

Something that doesn't mean needing to carry multiple items with you.

Our idea is: a double sided wristband, with the 'Today is tough' red design on one side, and the amber "Today isn't amazing" design on the other (although we may end up updating the messages slightly). This would create a flip-able wristband that can let people know your status.

We would get them made in 2 sizes: standard, and 'junior' (which are the right size for me - an adult with slim wrists) and embossed and infilled (so print doesn't rub off easily with use).

This is a video of a mock-up of how it could work. It is just two existing wristbands with one turned inside out, placed inside each other, so it's not the sleek finished product, but concept wise, what do you think?

Price wise - the combination of it being extra wide and double sided means the single wristband will cost me more to print than the current 3 pack does. Which means price could be as much as £8 including VAT (They wouldn't qualify for the VAT disability exemption, sorry)

We decided not to go with red/green because my experience the amber 'status' is much more important to communicate than the green status. Being able to say 'look, kinda ok, but don't push it' without actually having to say anything or turn my health into a constant talking point is incredibly useful.

Comment below with your thoughts, or let us know on our social media accounts. We are hoping to make some decisions by the end of the week.

Saturday, 20 June 2020

Today is a Go Away day.

It's been a busy few months, and changable weather, heat, hormones and the general wierdness of life at the moment seems to have aggravated various symptoms.

The overall effect is that listening to and processing words is hard enough. Trying to put a relevant reply together that doesn't sound offensive is exhausting on a whole extra level - while everything in me screams "I'm too flollopy to cope with this!" Although it's a very quiet scream because I don't have the energy for loud.

I've joined my brother's family bubble (he married my best friend and they have 3 young kids who are brilliant to hang out with). But today I don't want to see them.

I'm not offended or upset. I'm not even 'ill'.

I don't want to 'zoom' friends.

I want to be alone.

I need to be alone.

Alone to relax and recharge in my silence.

Soon I will re-emerge, but right now: Please Go Away.

Laminated keyring card with stickman, reading "Sorry, I can't cope with people right now, Don't take this personally but please go away.

Tuesday, 28 April 2020

The positive and negative power of the To Do list

I use To Do lists all the time - they help me structure my day, prioritise my work, and ensure I do what needs to be done.

However, To Do lists can be overwhelming. When there are a lot of tasks that need to be done over a period of time, and the big tasks or projects consist of 10's of small tasks, the list can become a seemingly impossible demand on my time and energy. Demotivating and counter productive.

I'm currently in one of those patches - when both work and personal life have masses of tasks waiting to be done. The sheer scale of my To Do list is scary.

So I have 2 lists. The 'mastercopy' - with everything. (it's online so I can move things about, add things, make tasks part of bigger projects etc.)

And then I have my Today list.

This involves me going through the big list and choosing a limited number that is just below what I think I can manage. This includes picking up simpler tasks for rough days and leaving the more 'brain intense' ones for other days. And then I end up with a list which I can work through and feel I'm achieving - and I might even manage to do a few extra things - but all without being overwhelmed by the sheer volume of the big list.

It's made a huge difference - enabling me to work effectively at whatever level I'm able to, but without being overloaded by tasks for other days.