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.
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!
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!
I know exactly what you mean about 'recharging', I can often manage to do little more than watch three or four episodes of Stargate or GoT on a 'bad' day, but on a 'good' day I wouldn't dream of wasting (maybe that should be in quotes too?) the time when I should be working on WW1 research watching tv. The fact that this is voluntary work is immaterial, I feel the guilt just the same.
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