So it’s been a while...and what a while it has been! I
definitely meant for my first post back to be really positive, all about
holiday and achievements and surprising myself. Unfortunately, I don’t think
that’s what I need right now. I’ll post about all the positives at some point,
but this might end up being a bit of a rant (sorry!)
So...on the Friday after getting back from Croatia I had my
assessment for the rehab clinic. I was nervous as I definitely had reservations
about it, but I was also excited. This could be it! The thing that helps me get
my life back on track. I’d been doing so much better recently that I felt like
I was really in a place where I could get on board with it. I’ve been getting
into more of a routine with my wake/sleep cycle and been managing my energy
better with afternoon naps, meaning I can actually have 2 bursts of ‘doing’
during one day (we’ll ignore the doubling of the waking up grump!) I’ve been on
holiday and actually dealt with my anxieties about it (and we really did
have an amazing time). But it all started going to shit when I got there.
Somehow I’d got the timing wrong for the appointment and turned up at 3 instead
of 1, cue an anxiety overload. However, they were able to fit me in and I met
one of the occupational therapists that works on the programme.
Did I mention they sent me a questionnaire to fill in before
I went? (I’m sure you can imagine how
much I LOVE patronising and overly simplistic questionnaires). The
questionnaire asked you to do various things like colour in this image of a
body where you feel pain. Well, my picture was totally coloured in. I literally
feel pain from my head to my toes. I get facial pain, neck pain, shoulder pain,
arm pain, wrist pain, finger pain. I feel pain in my back and my hips and my
legs and my knees and my ankles and my fucking toes. I get pins and needles in
my extremities and it can take seconds for a part of my body to go numb. It
also asked various things like your walking tolerance (a couple of minutes at
most, at worst I can’t get out of my flat) and whether or not you fall (I tend
to stumble a lot, but am usually able to catch myself before actually falling
over.) They ask you how they can make the rehab clinic better for you to which
I responded ‘not scheduling heavy/physical activities in the for the morning’, which I
thought was quite a reasonable response.
So I sit down the OT and guess what she has in her hands? My
questionnaire! She proceeded to go through it question by question. She asked
me where my worst pain was, I looked at her in disbelief. Um....well...everywhere,
as I explained on the diagram. She then looked at my answers regarding walking
tolerance and posed a rather aggressive question “Well, if you can only walk
for a couple of minutes at a time and need to rest every afternoon, how do you
expect to do the rehab program?” I looked at her blankly, not quite believing
the question to be honest. “Um...well, I thought that the program was there to
help me get better and gain my strength”. Her response– well we don’t adjust
the programme to your needs, you have to attend all of the sessions or we’ll
kick you off (it seems having no spoons isn’t an acceptable answer in this
clinic). She went through the timetable which starts at 9am with a physical
session every day and goes on until 4 or 5 with only a break for lunch. I’m
aware this is the schedule of a normal working day but I can only ‘do’ for an hour
or two at a time (on a good day) before needing to have a rest and recoup my
energy. Whenever I asked her a question about the programme, her response
always included the fact that ‘if you’d turned up at the right time then you
would have known the answer to this’. Obviously,
it was an honest mistake. I was already feeling dreadful about the fact that I
had got the timings wrong, it’s not like I did this on purpose, yet she still
felt the need to remind me about this over the session no less than five times.
At some point she
brought in a Physio to go through the all important presentation that I missed.
By now, they were making it quite clear that they thought I would be best
suited to doing a rehab programme in the hospital instead of in the hotel. I
hadn’t been prepared for this AT ALL. Firstly, I had only been aware of the
hotel based program, and that was what I had in my head of where this would be
going. Somewhere where at the very least I have my own room to go to at the end
of the day. But no, in the hospital programme there is only an 8 bed dorm (it
can get quite noisy, we suggest you bring some earplugs if we do accept you).
Honestly, they couldn’t have told me anything worse. I’ve already told you
before how I am really not comfortable with spending nights away from my own
home. I’m getting better and have spent nights at my parents house without
having meltdowns (and of course on holiday, but that’s kinda different). The
idea of having to spend 3 weeks living on a ward with 8 other people genuinely fills
me with anxiety and unease. I REALLY
need my own time. A space of my own I can hide away in if I need to, and there
just isn’t that available. I struggle with sleeping at the best of times, I
have nightmares and often wake up in the night. I’m really sensitive to noise
even with earplugs in. Add to that the idea of eating hospital food all that
time...I’d rather starve!
They said they were worried about my ability to get myself
from my room to my sessions without harming myself, or falling over. I found
this pretty patronising to be honest. I explained to them I’ve lived alone,
without care, ever since I’ve been significantly ill (bar a year with my
parents). I’ve never had home help and I’ve always managed. I think this is the
point where I realised what was so horrible about the whole appointment, I felt
like I’d been attacked for an hour and a half, because their response was ‘You
ARENT ill’. I’m sorry? “You don’t have a cold or the flu or anything, you
aren’t ill” “Well, I have a genetic disease...” “You have a syndrome, you
aren’t ill” At this point I gave up. I couldn’t believe that they were going to
fight me about language I use to describe myself. I’m still very uncomfortable
with referring to myself as disabled, even though I know that is what I am AND
WHO THE FUCK ARE THEY TO SAY OR DEFINE WHAT I AM AND AM NOT.
When I explained my reservations about the intensity of the
programme, their response was to tell me that they’d seen thousands of EDS
patients so they know what they are doing. I’m no different to them. Oh and
another reminder that I have to fit into the programme, they don’t change the
programme to fit into the patient. Well, thanks. I have never really fit nicely
into boxes. I’ve always been on the outskirts, carving my own way through the
world. So I left feeling like once again in my life, I was trying to be
squeezed into a box that I had no hope of fitting into to, and yet if I don’t,
I will feel like I’ve failed.
I left that appointment feeling like I was bruised and
battered, like I’d failed. I have a feeling they aren’t going to let me on to
the programme, and even if I get a place, I don’t know if I will be able to do
it emotionally or physically. So I feel like I’m back at square one, because I
was under the impression that was my last chance saloon. I’m not feeling all
that hopeful about it all at the moment....
HOWEVER. There was one HUGE positive about the day, hospital
transport. Oh my god this is amazing! Usually the idea of getting to my London appointments
is pretty much the biggest worry I have. I’m really not great with trains (can’t
walk through the train stations, get stupidly anxious etc) and I certainly can’t
drive that far (particularly not in my banged up little motor) so it’s often
been a very expensive endeavour getting me there. Until we found out that I
qualify for NHS transport and OH MY GOD IT WAS INCREDIBLE! I had a lovely man
(Piotr) pick me up at my home in an extremely comfortable and clean car and
drive me all the way to my appointment. Afterwards he let me have a cry and a
cuddle with my parents before taking me home and chatting to me all the way (I
think he could tell I needed some distraction). Seriously, the NHS has some
failings but it gets some things VERY right.
So, another appointment that left me feeling less supported
and more despondent about getting better, but at least there was a positive
about the day. I’ve now had a week to mull it all over and I feel better than I
did. At the end of the day, there would be no point me doing a treatment that
would cause more harm than good, but I’m left feeling quite miffed. I don’t
understand the aggression that I received, or why they’d even ask how to make
the programme better for the patient if there is absolutely no flexibility. I’m
also very confused, because I was left with the impression that I’m not well
enough to do the rehab. I have to say, that makes no sense to me whatsoever.
