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!]