Thursday, 24 September 2015

Dance, DM boots and the price of fame.

Well, Tuesday was really fun - and utterly exhausting. A crew were here on behalf of the English Federation for Disability Sport, filming about ordinary disabled people being active - not elite sports, but just everyday normals like me finding ways to be active that work for us.

The film crew arrived in the afternoon to film a bit of background and do some interviewing. I paced as well as I could - interview questions were mostly answered while horizontal, and they all got banished for an hour between interview and dance class while I had a sleep. And then off to the first dance session of the new term - oh how I'd missed it!

It's really hard to put into words how much I love being in an environment where I am treated as an equal, my limits are respected and accepted as 'Hannah normal' and I get to move in ways that work for me and feel beautiful - it's really hard work, but is SO fun, and also has proved really useful for helping me manage my EDS and POTS - provided I am really careful.

The poor film crew now have 110 minutes of footage to turn into a 2 minute clip.

I was highly amused at the fact that the shots they got most excited about were:
a) Me flopped on the sofa, filmed from outside the patio door with my 'happy wheels' sticker in the foreground.
b) My Doc Marten boots all lined up in the hallway,
c) My pacing fridge magnets on their board
d) The room thermometer next to my lightweight dumbells and the TV remote - kinda said a lot about condition management
e) My Doc Marten boots all lined up in the hallway, Again.
f) Me putting my Doc Martens on.

If the boots don't make the final cut, I shall be rather surprised - although I can't remember whether they got my explanation as to why I wear them on camera. (DMs look better than ankle supports, and still stabilise my ankles enough to help).

By the end of Tuesday I was flopped. Total zombie.
I knew I'd be tired so I'd made sure I didn't have anything urgent to do on Wednesday, but I'd forgotten just how exhausting concentrating and talking can be!

So yesterday I took the day off from everything non-essential. I watched more TV than I'd like to admit [the entire long version of sense and sensibility, mostly with my eyes shut, plus several 'easy-brain' TV programs] while getting up every few ad-breaks to move around, stretch, and rehydrate - before returning to the sofa whenever 'zombie' started creeping up on me again.

For me, that's my best way to recharge after something that has used a huge ammount of energy. It's actually far harder than it sounds because part of me feels guilty about doing so much nothing. But it's not nothing. It's building a better future. It's recharging. It's essential. (And I reckon that by mid October my 'recharging' hoodie design will be up for advance order - ready for delivery in December. It's nearly designed, and I love it so far!)

And it worked. Today I still need ot be strict with short times upright, but I can actually function, and even manage a short conversation!

Tuesday, 8 September 2015

World Physiotheray Day: Fulfilling potential

Today is World Physiotherapy Day, with a theme of 'fulfilling potential'.

As someone with a connective tissue disorder, physiotherapy is essential for building muscle strength and stamina to stabilise and protect my floppy joints - and so is a physiotherapist who listens and takes the time to work with me to find solutions - who respects my limits but isn't afraid to support me in giving them a calculated push on occasion. I love finding that things previously impossible are now beautifully do-able. Even if it is done differently.

(poster available from

I co-hosted @physiotalk's twitter chat last night. It was absolutely fabulous to see so many professionals so keen to learn and improve their skills and services. (see here)

One thing that struck me was the enthusiasm for engaging patients in setting goals and the patient being a partner in the whole process. This is awesome. It reflects my current relationship with my physiotherapist.

I am clear about my goals, and my potential
- to run a successful business
- to do contemporary dance regularly
- to manage my energy so I get the most out of life
- to socialise.
- to be as healthy as I can be.

In order to fulfill this potential I use a manual wheelchair, a powered off-road wheelchair, a PA helps with personal care, household tasks and food prep, I exercise, and I pace my activities for best use of my energy. Both my therapist and I know how useful these things have been, and how they have enabled me to improve my health, get stronger, and manage my pain and fatigue. We have been through many discussions, weighing up options and my body's response to them. I need her input, and she needs mine. I don't see her often - I get referred back when things change and I need more guidance - but when I do it is like meeting a colleague, which I really like.

But I am a seasoned physio-ee, I'm familiar with the system, I understand the language. I will confidently, calmly and assertively state my case based on an in depth understanding of my body and conditions, as well as years of progress in condition management.

But it wasn't always like this. I remember a physio appointment shortly after being diagnosed with a life-long condition. After a lifetime of various health issues while being told there was nothing wrong with me, and a year of dragging myself round on crutches - in agony, exhausted, and unable to function, I bought myself a wheelchair.

And the therapist, keen to encourage and help me set goals said (I paraphrase)
Physio: "What would you like to achieve?"
Me: [thinking....I don't know what is possible. I'm only starting to understand why I have the symptoms I it possible to get back to how I was? Or is that setting myself up for disappointment? If I say 'not to need a wheelchair' will I be told I'm a failure and not trying hard enough if I don't manage it? If I say 'to be in less pain' will they think I'm being silly and tell me I just need to learn to deal with it, like my previous rheumatologist did?]
"I don't know."
Physio: "How about to stop using a wheelchair?"
Me: [thinking....I could stop using a wheelchair tomorrow, but I'd have to stop work. I love my job. The thought of leaving it makes me want to cry. I'd be housebound. I'd have to move back in with Mum. When would I be expected to do this by? What if I can't? Will that mean I be dismissed and told I'm not trying? I do try..I do my best...but I just cannot, here and now, see me stopping using a wheelchair. My wheelchair has made so much possible, and the thought of giving it all up is almost unbearable. Perhaps it might be possible, but I really don't know. I can't aim for something that currently only looks possible by giving up work, social life and independence. That's depressing. But if I say no, she'll think I'm using it as a comfort blanket and tell me off.]
"Um...could we say to need a wheelchair less?"

Looking back I wish she'd suggested
"To improve your walking"
"To improve your posture"
"To improve your ability to go places, do things, and live life. - though better use of aids, better pacing, building stamina, learning to use your joints better."

Even if she'd tagged on the end "and possibly even stop needing a wheelchair, but we shall see - lets start from where we are, and see how things go." - I could have coped with the concept of it being 'a potential future goal when we understand your body better'. But not a stated goal for that point in time.

So to all the fabulous physiotherapists geared up to listen to your patients, please remember that most new patients won't ever have done this goal setting before - and if we are newly diagnosed with a long term condition, we are might be totally clueless as to what is possible (expecting a combination of far too much, and far too little) and rather overwhelmed by it all! So be prepared to suggest small and start from there to build our fabulous future, filled with things that were once impossible.

[Note: This is from my perspective as someone with a complex, long term condition. I have no idea how an average person with a one-off injury would approach goal setting!]

Tuesday, 25 August 2015

Bristol Zoo and the Right Wheels.

Once inside the zoo it's all pretty accessible, with all the paths being wide and tarmacked (although the toilets I went to were pretty tight if you are in a power chair - I left my wheels outside the door) I didn't need the full off-roading capacity of my X8 powerchair - but as my wrists were really playing up, using my manual wasn't a possibility, so off-roader it was.

The carpark is very uneven with slopes and chunky gravel even if you are lucky enough to be able to park near the entrance rather than in the field up the hill a few streets away. That would have been a nightmare in my manual! (a total non-issue in my X8)

Anyway, the trip was fabulous. Obviously it's nice to see the animals, but hanging out with my sisters, nephews and nieces was definitely the highlight.

It's funny the little things that made my day:

Helping smallest nephews and nieces to climb things (- using my chair as a ladder.)

Holding my nieces hand and swinging our arms as we went along  - something you just can't do when you walk with your hands.

The view from my chair was apparently the best, so any time we stopped the youngest climbed up and others leant on my chair. I was totally included. My chair wasn't a kind of barrier between me and the rest of the world like it sometimes can feel like - making me be further away. Instead it bought people closer.

At the end of our visit we hung out in the kids play area. I wasn't exhausted - which is pretty incredible (the joys of being able to recline and have a quick nap when needed!). So I spent the time playing with my youngest niece as she conquered every slide she could find. Wheeling easily over the woodchippings and raising my seat up so I could help her cross the rope bridge that led to her favourite slide.

It was a fabulous day that was only possible because I had the right wheels.

And one for which this sticker was totally appropriate:

(And no, neither of my chairs were supplied by the NHS because the only ones the NHS could supply me with weren't suitable. The NHS paid for less than 1/3 of my manual chair, everything else I have had to fund myself. So please support the campaign to ensure that the NHS provides the right wheelchair at the right time: )

Friday, 7 August 2015

Drinking without spilling.

I confess. This is not my strong point.

Managing to pour drink down my chin, onto my top and/or on my boots is more of a strong point.

As is knocking the glass off the table. More times than I like to admit.

I've looked at and tried various sippy cups and the like, but not found any that really worked for me.

And then add in the 'I need to drink something, but I really really don't want to have to sit up' factor.

But then I found these.

'Safe Sip' 

Embedded image permalink
And they really work! (Mine have already saved my laptop and my bed from impromptu showers.)

They are pretty easy to fit, can go on whatever glass/cup/mug I want to use, are easy to clean, and because the straw is held nicely in place, you don't have to do the weird face contortions as you chase the straw around a non-safe-sip-ed cup with your mouth.

And they are cheap. And stylish. And generically awesome.

I now have 3.

The only thing I would say is: don't keep them in the same place as your adaptive cutlery. It turns out they are not immune to sharp knives.

And no. I'm not being paid for this, and have no affiliation with the company :D

Edited to add: However, if you hold your cup upside down, a small ammount will dribble throught he vent in the lid. Thanks to my sister for discovering this. Fortunatley I don't usually hold my glass upside down for prolonged periods.

Thursday, 6 August 2015

Pacing, Frozen, and dealing with emergencies.

Yesterday was busy. Getting a more complex image/poster right, and writing a blog takes a lot out of my hands, energy and brain power.

So in the evening I was all set to watch Frozen. Just because.

With tea and cake.

So I'd be all recovered by today.

Until I discovered that the freezer had gone into overdrive and now contained thick ice walls, 2 inches of frost, and possibly a polar bear (there was too much ice to tell) - to the point it was slowly invading the kitchen.

Uh oh.

I had to sort it. Even though the decision making chart would have said no.

This falls into the category of 'emergency pacing.'

When on the one hand: IT MUST BE DONE.

And on the other hand: I'm so gonna pay for this.

So I did it. I successfully emptied and defrosted the freezer.
But as 'emergency pacing' it includes adaptations to minimise and manage the hangover it will inevitably cause:
Empty the ice/melt water bucket regularly so it didn't get too heavy.
When removing loose ice, I wore my winter wheelchair gloves to stop my hands freezing (seriously, they were waterproof and AMAZING) and provide a bit of support.
Did lots of very short sessions at the freezer, popping back to remove melt water, and brush off any loose chunks using the fabulous gloves.
Had a heater lined up to point at the freezer if it was taking too long.
No pulling/hacking/otherwise using force to remove ice.

And changed my plans for today. Last night I could tell my hands were going to be distinctly grumpy, and likely with high fatigue levels. So I re-did my pacing fridge magnets allowing for rest, stretching, short patches of work, and gentle physio.

Sure enough.
Today is tough.
But that's OK.

Because later, I'm watching Frozen (the DVD, not the freezer), accompanied by tea and cake.

Wednesday, 5 August 2015

The can't-can-can't-can of variable conditions

I saw the recent news article about a girl who gets called a 'fraud' because sometimes she uses a wheelchair and sometimes she doesn't - see here for the BBC News article.

I've experienced this first hand too. It's really frustrating and upsetting. (And I happen to have the same condition.)

But to make it worse...I can understand why people think that...and I'm not sure I wouldn't think that too if I didn't have personal experience of variable, invisible conditions.

So I decided to make a simplified version of my decision process in case it helps people understand why I can do something one time and not another.

This doesn't take into account my balance issues, which mean that things moving in my line of sight are likely to make me lose my balance.

Nor the consideration of whether to use crutches, wheelchair, knee braces, or try using just my legs - which is affected by which joints are playing up in which ways, coordination levels, fatigue levels, what I need to do tomorrow and more.

Nor that walking and keeping all my joints in line is like tightrope walking - and equally fragile.

Nor the 'lycra factor' - am I able to wear my lycra compression stuff (helps with my poor proprioception and reduces blood pooling and POTS symptoms) - and am I likely to manage to take it off again at night without injury.

Nor the fact that the situation may change half way.

Nor whether help is available if it goes pear shaped.

Nor a load of other things.

So yes, you might occasionally see me walk 5 metres looking absolutely marvellous, or get out of the car and walk to the boot and  but you won't see the concentration and effort, or the after effects.

Similar decision making processes apply to all sorts of everyday activities.

And I suspect that people with a range of conditions causing chronic pain and fatigue go through variations of this decision process.

So if you see someone 'looking fine' one minute and 'looking disabled' the next, remember it doesn't mean they are 'faking it', it might mean that they have a complex condition that they are doing their best to manage.

Monday, 3 August 2015

Picnic, proms and problem solving!

I spent Saturday evening at the Battle Proms in the Park in Highclere Castle grounds.

The setting, the music, the food and the company made for a delightful evening. I'd highly reccommend it.

But here are a few things I learnt:

There is a LOT of rough grass to travel over. So unless you have 'Popeye arms' bring a power chair or an 'outboard motor' (aka someone to push you)
The loos are across a field - so manual chair users, be prepared! (Or accost a friendly passing powerchair for a lift)

[Stickman cartoon of manual wheelchair user being towed by a power chair, both people smiling]

A good set of ear plugs are amazing if you are sensitive to noise. The fireworks, music and canonfire all reduced to a very pleasant level.
If you have a powered wheelchair, arrive early and make sure you get a picnic spot right next to a pathway so you don't get blocked by the swarms of neighbouring picnic-ers.
If you are in a manual chair, it's best to be near the pathway, but if you forget this important piece of logistical planning, a strong couple of friends may do the trick.

[Stickman cartoon showing lots of people picnicing, with one person giving another a piggyback through the crowd, and another carrying a wheelchair above his head. Text on image reads: "Successful crowd naviation"]
(Very pleased my not-so-little brother was there! And that I'd chosen to go in my manual - otherwise I'd have been well and truly stuck!)

And at the end, expect to spend a long time waiting before any car within sight actually moves further than 'just outside their parking space'. 3000 cars trying to exit down a single track at the same time causes a jam lasting an hour or more.

But that didn't matter. I'd booked Sunday off as a 'recovery day' (all food prepared, TV remote and sofa ready, To Do list: Rest.). We sat enjoying the memories of the day in the cool evening air to the sound of distant bagpipes playing 'Jingle Bells'.