>Day 42 of 100.
Just Keep Swimming
Straight into the water
Not cold but definitely noticeable
Soothing on too hot skin
Sinking down and down
Wet all your hair
And then keep your shoulders under
Smile at the kids on the other side
Say hi to a friend and chat for a few minutes.
Waves waves waves
Up and down
Up and down
The unexpected storm
Watch the aqua aerobics group
Try and fail to copy their movements
Surrounded by water
Stretch and savour
And only then
Do you swim
A lazy attempt at breast stroke
And a long float on my back
A few kicks don’t achieve much
But must be done
Right leg more than left
People think it’s just a swim
But it’s more than that
A rare taste of mobility
Without my wheelchair
>[I’ve been trying to upload this with photos in it for two days now. For some reason it wouldn’t work so I’ve deleted them and will share them some other time. Just pretend there’s photos of my awesome chair in here]
The new powerchair is great. I’m really enjoying it. Getting sick in the first week of having it and not being able to use it for a few days is seriously unfair. But such is life.
There are a few small niggles but none are a big deal.
One is that I had planned to use my Jay 2 deep contour cushion that I have in my manual in it too. But the chair is higher than my manual and they weren’t joking when they named the cushion deep. It’s huge. But oh so comfy. And with it in the Salsa I ended up with bruised knees and couldn’t get under tables. So I switched to my old wheelchair cushion which is a lowzone on. That’s much better for tables etc. just after a couple of hours it gets a little uncomfortable. Not a big deal but something to think on.
And the second is I keep pressing the wrong buttons. Because I do it without looking and press the one that it would have been on the jazzy. Totally a muscle memory thing and really minor. I find it interesting.
The silver footplates have grown on me. I’m no longer looking at them and going “ugly ugly ugly!!” but at the same time I’d have rather had them red like the rest of the chair. I really like the red but an actual choice of colour would have been cool. Purple or turquoise were what I’d been thinking about.
The extra speed rocks (most chairs do 4mph max, this does 6mph). Seriously. But legally I can’t use it on paths which means I don’t get to play with it often.
>…you master something age 30 that most people start doing in their teens if not earlier. You’re really proud of yourself even though it’s a small thing to most people. And your mum looks really surprised and pleased when you tell her.
Usually my bed gets changed once a fortnight when my cleaners come. But on Thursday it needed an extra change. I can strip it myself and change the pillowcases but thats it.
So I stripped it and fished clean bedding out ready for when my dad came round to do standing and he could make it up. But then I got to thinking “what if I tried this…” and I managed to get the duvet cover on myself.
And it wasn’t easy but it wasn’t a huge struggle.
I just need to figure out doing the sheet myself now
>Day 40 of 100. This feels like a huge achievement.
I feel a little better today but still pretty grotty. Good news is my chest has cleared up so I obviously don’t need antibiotics and didn’t go to the doctors. Frankly I’m amazed by that. I never thought it would improve this much. My parents and I were all convinced last night that I’d have to seen. In fact Mum told me she had a bad night worrying about me.
Anyway, here’s another poem
Twists and Turns
A twist in the road
And then a turn
Both usual things
But at the same time unexpected
Unwanted unnecessary and definitely unwarranted
The road twisted
Where usually it turns
And this turn
Would usually have been a twist.
Not a big deal
At first glance
If anything it’s good
It gives a great chance
To see things that are all too real
And those you didn’t think you would
But then in other ways it’s bad
Because plans have changed
An easy day would have been had
Until it had to be rearranged
And then the road twists
Before it turns
The journey continues
Nothing to worry about
Good or bad
This journeys all you have
No matter what
You have to see it out
Like it or loathe it
Twists and turns
Are all you’ve got
Turns and twists
Your life’s journey
Something not to be missed.
>Being poorly sick sucks. This cold has gone to my chest. But it is providing good inspiration for my 100 days of writing.
A tired crip sits in her wheelchair somewhat unwillingly. It’s really not a good day for her but life doesn’t stop and she’s forced to continue on her journey. So she wheels on and on in a slow plodding manner lacking her usual energy.
The land she’s journeying through is a tough one, bleak with more obstacles than The Country of Everyday Life and she searches desperately for the road that will lead her there once again. Somehow she’s spent the last several days in the Realm of The Cold with no end in sight. Happy days and fun times seem a distant memory. The landscape is one of tissues, lip balm and Olbas Oil, in no way what a crip wants to see on her journey.
Suddenly the journey gets harder. The crip needs to rest more often. But that rest gets interrupted constantly by the need to keep moving. Things aren’t looking good.
Until. A glimmer of hope.
A fork in the road.
Heartened the crip speeds up her wheeling believing her return to The Country of Everyday Life could be down that fork.
Full of hope she heads down it. Pleased to see The Realm of The Cold disappearing behind her.
Until. Hope disappears.
The crip finds herself in The Land of The Chest Infection.
>Snotty snivelling sneezing
And tickley throat
Too many tissues to count
And no energy
Sniffing thickly noisily breathing
Olbus oil fills the room
The girl gives up
Sips water incessantly
Goes to bed
Happiness joy and cheer
The virus runs away smiling
Pleased his work is done
Her first cold of the year
>As I wrote on Wednesday Ive been to spasticity clinic this week.
I didn’t see my neurologist, I saw his registrar. Well, I did see the man himself but not properly. He was running just under an hour late and he came over and shook my hand in the waiting room and said “I’m sorry you’ve had such a wait Mrs Crees” (he always calls me Mrs Crees, even though it’s actually on my notes as Miss and personally I often us Ms). Then he said his registrar would see me and I thought he said he’d be coming in in a bit but he never did. We did manage to get my physio in briefly to get her take.
I had my back to the door when she came in. She said “hello stranger” and made some comment about fatter than when she last saw me. I didn’t say anything but I had a momentary flash of annoyance because, yes, I’m fat you don’t need to comment. It didn’t last long because practically as soon as she said it she was in the room properly and I realised she was talking about herself and the fact she’s very pregnant. That’s one of the perils of being fat I guess immediately jumping to the conclusion that any mention of fat or weight relates to you.
Long story short I’ve had another round of Botox but I won’t be having serial casting. They felt there would be no benefit in that and I would have declined anyway. Or at least I think so. They’ve advised me to do as much standing and walking as possible in the next few weeks so I’m trying to use the standing frame daily for a while.
The registrar thinks I might need the jabs every six months rather then every three to four but says they’ll see me 4 monthly for at least the next year. Cue a minor “where is the year GOING?!” discussion when she said they’d see me June, July time.
>I decided to focus more on description today. So this is more of a brief scene or perhaps a beginning.
I’ve just twigged that day 100 is Sat 28th April. Which is the day I’m having my (late) 30th birthday party. Which is extra cool.
Day 37 of 100 days of writing.
There were plenty of chairs in the room. Big ones, old ones, battered ones and brand new ones. Some were comfy and others were definitely not. It was a large room with chairs enough for ten and room enough for more sat on the floor. But still they played a game of musical chairs. Because there was only one chair that everyone liked. The Chair they called it. And although supposedly grown women they fought over it like jealous children claiming ownership of a favourite toy. No one knew where it had come from, it had just appeared in the room one day. There were many positive things about The Chair but even those they couldn’t agree on. Some said it was the most comfy seat they’d ever had. Others disagreed and said it could definitely be improved in the comfort stakes. They loved it because it’s height and it’s angle. That was the beauty of The Chair. It never gave up it’s secrets but somehow it managed to be different things for different people and everything they needed. A plain, not much to look at, magical chair
>Hospitals are interesting places to people watch and get inspired for writing. This hopefully catches some of the experience. In a way I wished I’d taken my iPad and written there but I enjoyed reading my book.
Day 36 of 100
Grotty food like school dinners
Too many people in a small space
And some kind of cleaner.
Paramedics and transport techs
Nurses, doctors and other staff
Add in patients, visitors and family
A constant swarm of people
Wheelchairs wheel all over the place
Powerchairs glide silently
Stretchers trundle and squeak
And crutches add an extra rhythm to footsteps
An alcohol wipe gets rid of bacteria
The smell probably scares them away
“sharp scratch now”
The drug stings and burns its way in
More blood than expected drips down my leg
Cotton wool and pressure does the trick
Too many plasters to count
And gloves that rip.
Lifts announce “floor one”
And nurses scurry
Hospital life is all
Hurry hurry hurry
Deep voiced explanations
Then ask for clarification.
A one off visit
But fear grips
What if multiple visits are needed by this crip?
The news isn’t so bad
The doctor seems very happy
Says its good to meet me
And that they’ll leave me be
A firm handshake
A smile – and thanks
Drop down a floor
Wheel out the door.
Don’t look back
Going home at last
It’s been a long day
Very glad to get away
Hospital life never stops
With its highs and lows
Noise, trauma and bright lights.
Full of success and nasty shocks
But from my thoughts it is gone
(although the memory lives on)
It’ll be months before I’m back there
In amongst others receiving needed care.