Since getting out of hospital I have kept thinking that I should
write about my time in intensive therapy. How they schedule you for three 30 minute
sessions of intensive physio/hydro/occupational therapy a day (the normal
session being 10 minutes) and send you off with the aim of doing that four more
times today (in case you thinking that’s not so bad imagine doing 6 hours of
the exercise you find hardest every day) and that is what we did. Through the days
we found it hard to get up, the ones we couldn’t remember our names and the
ones where the pain we were feeling barely touched on how much we missed home
because we had an amazing opportunity and we knew that we did.
I’ll write more about that at some point (it has taken 30mins
to type that single paragraph) but tonight I guess I’m more focused on the trip
into the dark side. The reason I am sitting on the sofa crying adjacent to (id
be in big trouble if the keys got jammed due to tears) my laptop. I have been
typing with one finger for the last forty minutes because of the post hospital
events.
Step 1: stomach bug
Step 2: wrist dislocation probably during episode of vomiting,
retrieving dislocated rib or other routine activity
Step 3: recover from stomach bug to realise wrist is ‘wrong’,
report to A&E
Step 4: A&E staff panic because they have never met someone
with EDS and wrist looks ‘wrong’ to ortho clinic as hand and wrist expert fully
booked
Step 5: ortho doc ‘not confident treating’ ref to hand and wrist
surgeon and a half cast in the Edinburgh position on it in the meantime.
Fun huh? So I have a wonderfully heavy cast, sore and
spasming arm and severe case of pissed off zebra! To add insult to injury this
is the first upper limb injury in which I haven’t been staying with my parents
meaning problems like I can’t get my bra on and it’s impossible to eat a range
of foods single handed taken on a shiny new level of cringworthyness!
Part of this post is indulging in a pity party but part of
it is a genuine question about the dark side. When you are always the one contact
friends and arrange things are you barking up the wrong tree? Ok so I am housebound
right now but that gives me more time to think about how much time I am home
alone when I’m not. Can a health professional who sees you for 10 minutes really
assess if your mask is you or if you are so used to dealing with the crap life
throws you’re stuck in happy smiley land and can’t break free?
Finally given that we live in a country where summer is ten
days in April why the hell don’t SAD lights come on the NHS? I don’t personally
have SAD but I do need a lamp to help with hormones that are out of whack
meaning sleep is harder than it should be even considering my joints go out
(far) more than I do, especially at night? Currently my research tells me its
damn hard to find a SAD light rather than SAD-like lamp and if you do they cost
more than the £20 the UK benefits system allows for frivolities such as food
and medicine (not even drug are part of the DLA package, pay out or get cut
off!).
So nearly 2hrs later this sad zebra will take her faulty
hormones and broken body back to bed for another night of not so peaceful
sleep!
