Hospital Thoughts

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

Hospital Thoughts

Hospital smell
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.

Drips beep
Lifts announce "floor one"
Patients cry
Others laugh

Phones ring
And nurses scurry
Hospital life is all
Hurry hurry hurry

Deep voiced explanations
Technical words
I pause
Then ask for clarification.

A one off visit
Outpatients.
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.


♥ Emma

The Man With The Needles

I'm going to see my neurologist tomorrow in spasticity clinic. Hopefully this will be a joint appt with my physio (it's meant to be but the track record on that isn't good) to discuss whether I need more Botox. And for me to have the jabs if so. I suspect that will be the case. I also wonder if my baclofen will be upped.

I described that to a friend as "going to see the man with the needles" last week and thought that was an intriguing idea for writing.

Today is day 35 of 100 which feels like a huge number of days achieved. Especially as I almost forgot to write at all.

The Man With The Needles

"I've got to go and see the man with the needles tomorrow"

"you've got to go and see who?"

"the man with the needles."

"oh... Ok and who is he when he's at home?"

"I told you. He's a man. With needles."

"Right. That's cleared things up."

"I think he specialises in needles you see."

"Does he not have a name?"

"He does"

"Which is?" You might be out there but I doubt even you call him The Man With The Needles to his face."

"It's... It's... Oh god what is it?! I know this, I know I do."

"You've forgotten, haven't you?"

"No... Give me a minute, it'll come."

"Told you your nickname habit would get you in trouble someday."

"Oh Jesus this is pathetic, even for me."

"Whatcha gonna do? Walk in there and ask for The Man With The Needles, hope they know who you mean?"

"I might have to. Oh god this is going to be embarrassing."

"it is. Bet they laugh. I would."

"yeah, thanks for that."

"So anyway, what does he do with these needles this specialist guy? Its gotta be something skilled to hear you talk so what is it? Tattoos, piercing, fillers, Botox?"

"He sells them"

"He sells them?"

"Yup he sells sewing needles."





♥ Emma

Details on my new seating

Two weeks ago I went to Wheelchair Services for a new assessment. Two very productive hours later I left with a completely pimped chair and all new seating.

And it was so easy.  I didn't have to fight for anything and didn't need to argue my case at all - the therapist simply saw me and talked to me and made suggestions.  That was so different to my last assessment where I thought I was constantly having to push for things (and where I didn't get what I needed looking back).  I'd actually made my Dad take the afternoon off work to take me so I had back up - and had given him strict instructions as to what we needed to get a definite answer to etc etc.  Turns out I could have gone by myself.  But it was absolutely lovely to get there just the right amount of early and to leave as soon as the appointment was over - and that the only stops on the way home were the ones we wanted to make.  I'm very grateful for hospital transport but it does make for a very long faffy day usually!

The first thing she did was give me a new wheelchair cushion.  It's a jay2 and she added an insert to the left side to level out my hips (my left hip was previously lower than the right). This led to the discovery that the curve in my spine is high up and with level hips, my shoulders aren't level.  Nothing can be done about that.  She also added a pommel to the front of the cushion to help me keep my legs/knees apart.

The cushion is so high that I then needed my footplates raising.  And if I'm honest in the past two weeks I've found they weren't raised high enough - must get my dad to shove them up a bit more.  I know how to do it but I need to be sat in the chair to make it work and that's not going to happen if I try!

The frame of my chair needed to be dropped lower on the wheels (or the wheels were changed to a higher position on the chair, more likely). That was to make it easier for me to reach the wheels and push myself.  With the new cushion I felt like I could reach but it wasn't as easy - I had to reach down rather than putting my hands there and they were in exactly the right place.  It then became obvious that my casters needed repositioning as moving the wheels had left me with a very bucketed seat which isn't right for me.  We won't talk about the amount of yarn and other crap she pulled out of the workings when she took them off to move them.  I knew there was a load there but I hadn't realised it was that much.  Cue the OT commenting that that might be why it wasn't very manueverable. In an amused kinda way.

In terms of the backrest of my chair (I already had a jay3 backrest) laterals were added.  I pretty much knew that I needed laterals but had anticipated that this would be where the problem and the needing to fight would be.  This was due to the fact that all the physios I saw over the summer (and the fact that serial casting requires two people meant there were a lot) tended to follow up remarks about the lack of support my chair gave me with a comment as to my lack of arm rests.  But as I finally pointed out to them, arm rests do not give support on your sides and as that was what they were talking about my lack of arm rests was irrelevant.  The physio in question agreed with me about that but it had made me apprehensive about the discussion when I got to wheelchair services.  I need not have been because there was never any question of my not having laterals and arm rests didn't get mentioned at all.

The laterals in question are swing away ones.  They have a catch to move them out of the way as needed.  I've also found that they move if I deliberately lean to one side (to reach something) although not as easily.  I'm not sure if that's meant to be the case with swing away laterals or not.  It's a little annoying if I'm honest but I could see it as something that's meant to happen.  Possibly to stop people hurting themselves but also as a memory prompt - if it moves when I'm not deliberately reaching over then I realise that I'm tipping to one side (the left almost always) and can right myself.  I like them, they help a lot and they are really inobtrusive, hardly noticable at all.

The final thing that was done to my chair (for now) was the addition of a spine align kit.  This amuses me because it sounds all high tech and complicated and like some sort of painful metal frame.  But it's two foam wedges with velcro on them placed between the plastic shell of the backrest and it's cushion.  These help the cushion mold to the shape of my back more and make it more comfortable.

In a few weeks I will be getting something fitted to my footplates which might stop my legs going into extension when I wheel.  I'll believe that when I see it (it working I mean) but I'm willing to try it.  I think they're called Skate Shoes but googling can't find them.  It's something shoes anyway.  They are screwed on top of footplates and you put your foot/shoe in them and they're shoe shaped.  Usually people have them to stop their feet slipping backwards off of the footplate.  I'm having a cut down version (hence the delay) put on the wrong way round in an attempt to stop my legs going forwards.  I very briefly tried a calf strap but as I told the OT it hadn't in the past it didn't work. (she believed me but had asked me to try it so she could see what happens)

The fact that these are called something shoes was a cause of (slight) amusement as we were leaving the hospital when my Dad said he didn't think it would work as I have enough trouble putting shoes on and wouldn't be able to put these things on too.

At the moment I'm not getting a new chair but there is a brief possibility I might find I need one.  The one that was discussed very briefly was XLT by Invacare which is a rigid chair and looks great.  Altering my seating and giving me a new chair at the same time wasn't thought to be a good idea as it would make troubleshooting any problems doubly complicated.  As much as I would like a new chair... I'm thinking it probably won't prove to be necessary. Sadly.

I'm loving my new seating but still getting used to it really.  I did find the fact that the chair I have (an Invacare Action 3) retails for £495 and the seating I have (a jay2 cushion and a jay3 backrest with laterals) retails for over £800 a little hard to get my head around but there you have it.