So Monday is going to be a big day....
I have new carers coming in... Again.
I have been through 2 care agencies
already and now I am onto my 'long term' team, who will be with me
for 12 weeks.... Because THAT to the disability world is 'Long
Term'.... Yeh, thats what I thought too....
SO yes, first I had my emergency care
team, they were with me for 2 weeks, then I had my START
rehabilitation team whose goal was to stay with me for 6 weeks.....
they have lasted 2. They have given up and are going home... no i'm
joking really, they did my assessment and have realised I cannot be
rehabilitated in my current condition... Well NO SHIZZLE SHERLOCK!!
Seriously they were lovely ladies, bar one -if you're reading you
know who you are and what you did!!- but the whole system is mental,
and I mean more mental than I am right this second. I have Paralysis
from the hips down, and I have mild to severe (apparently according
the ME Association) M.E, and they actually thought they could
'rehabilitate' me within a few weeks.... I laughed at the concept a
time or too and the carers laughed along side me, because we ALL knew
it was ridiculous. How can you rehabilitate – oh my gawd I sound
like a repeat offender being let out on parole or something- someone
with M.E or Conversion Disorder in 6 weeks, or in actual fact- EVER?
If the medical profession hasn't found
a cure/proper diagnosis system/ or actually anything to do with ME OR
Conversion Disorder, then what were my council thinking when they
sent a Rehab team around? I mean come on, seriously??
The first day they came in I was
greeted - woken out of a dead sleep by a stranger would be more apt -
by a woman I shall call.... Daisy. And she proceeded to tell me
exactly what THEY were going to do TO ME. The expectations they had
FOR ME. And the goals that I was to MEET by the end of their
assessment and rehabilitation period (6weeks). I tried to explain to
this woman, as politely as I could to a total and utter stranger that
I had been woken up to find standing over me in my home, that I would
try my hardest to meet those goals but that I would inevitably have
good days and bad days.... to which her reply was... DRUM ROLL
PLEASE... 'So you're not even going to try then?'... She was one of those special people i think who doesn't understand, want to understand or even care about what ME actually is and does to people.
Well we did not have a great
carer/client relationship from there on out really, she wouldnt take
the time to understand my conditions, saying it was a WASTE of HER
time, and that she would treat me as if I was a normal patient, a
fully functioning, non fatigued, non everything patient....
This was my reaction:
Bless her, she tried. But as you may
have gathered from my threads, if someone does something that I
believe is wrong I am right on the phone, email, smoke signal and
telling someone higher up about it.
I dont believe in letting people who
are doing something wrong get away with it. The last straw was her
leaving me in my wheelchair for 4 hours, unable to go anywhere, do
anything, or transfer myself back into my bed. It nearly killed me
for many reasons, the main two being; a) if I had fallen asleep (as
those with ME are prone to do <insert sarcasm here>) then I
would have fallen out of my chair and probably not woken up –
probably leading to a hospital visit for suspected head injuries, and
b) because I had to keep myself awake, on a BAD DAY, when all I
wanted was to relax and nap and do whatever I can to get myself
through to the next morning.... but nope, she knew better. Then I
knew better when my social worker just happened to get a phone call,
who then just happened to make a phone to what just Might have been
her boss, asking for her to be taken off my rotation.... Bye bye
Daisy.
So yes, on Monday I start with another
Care agency, for 12 weeks so that I can start advertising for a
Personal Assistant who will be both my carer and my companion/taxi to
places I want to go to that I can't get to now.... The park to give
my Pippin a run, to the garden to feel some fresh air and sunlight,
or heck if i'm having a flipping EXCELLENT day maybe to the
cinema.... Cause thats the way I roll people!
So, I am looking forward to meeting
these new people who are going to be looking after me, my life
basically in their hands, and I hope we get on alright. After all
these people are helping me live my life, yes at the moment all my
energy is going on dissertation writing but thats still living!! But
the boss of the new care agency might have got a phone call already
from someone sounding like myself, asking them to come fully informed
of both my conditions and that if they did we would get on like a
house on fire.... Awesome Sauce alround me thinks!!
Monday is a big Day!! But also a sad
day because the lovely carers that I have had from the Rehab team are
leaving and along with them goes Gerda (Freida), 'Toilet Sheila' ( I
ay or may not have fallen asleep and scared the crap out of her),
Emily Dickenson (because I could never remember her real surname), my
old nanny/carer Audrey- who still knows how I like my hair brushed
and head rubbed to calm me down-, Barbara (margaret), Esmerelda
(imelda), Angela and Caroline( whose name I could only remember
because I just watched season 2 of The Vampire Diaries :S). They have
worked tirelessly and with complete and utter compassion that I just
want to grab them all and give them a HUGE hug... because they were
fantastic!! And I am sad to see them go, Because your carers become
such a huge part of your lives and its only when things change or
they are gone that you realise just how hard life is without them, I
defintely don't think I could stay as up beat as I am, most of the
time, without them:(
So yeh i'm talking about employed
carers, but I havent even scratched the surface on familial carers!!
But I think thats another Blog post!
Oh by the way peeps of Blog reading
land... we Totally got to over 700 reads total last night!! Well Done
and keep up the good work!!
