1 ) Poker face is a reflex to: my
knee popping out, vomit entering my mouth, the room doing an unexpected
loop-the-loop.
.
13) How many GP receptionists does it take to change a light bulb? Sorry if anyone out there is a GP receptionist; mine are horrendous. They can't ever solve the simplest of queries. I’ve had other people’s prescriptions and other people’s test results.
14) Having long bendy arms means you can apply sun cream to your entire back all by yourself.
15) There is never a time, a place or an environment that I can’t sleep in. Sleeping is my natural state.
17) There is no cure for EDS!!! But that will never stop people offering you magic/crystals/diets.
2) People say stupid things and you
realise, you’re normal and they aren’t.
3) Non-clinical Tourette’s syndrome
is secondary to living in an environment polluted by stupid people who say
stupid things. It’s chronic and debilitating.
4) Waking up feeling good takes me
by surprise sometimes, and I have to go back to sleep for 5 minutes to make
sure, this is indeed real life. It's like waking up and realising Santa has been. How sad.
5) Night times are annoying. You go
to bed feeling fine and you wake up in an hour and your head is straight in the
toilet. Sometimes you go to bed feeling awful and take a wonderful tablet and
you wake up after a ten hour sleep feeling buzzing. I am so confused as to how or why this happens.
6) Powdered tablets like
domperidone, cyclizine or codeine remain on your tongue after they’ve been
swallowed. If you stick your tongue out it’s there, all white and you can take
as many drinks as you like, it’s not going anywhere - your head fizzes with such a disturbance.
7) I agree to do things that I know
will hurt/I can’t do/I’ll regret. ‘Do you want to come to an all you can eat
buffet with us?’ ‘AWESOME!!!’ ………… ‘No I can’t eat any of that, I’ll just have
a tap water, thanks.’
8) Questions come when you don’t
expect them and you can’t prepare answers. ‘Why do you have a feeding tube?’
9) Sometimes it feels like there’s
no short answer to EDS related questions.
10) Hindsight. I’ve discovered the
difference between knee jerk reactions and hindsight is VAST. Not everyone
needs to know I just vomited a little or that my shoulder popped right out. No
matter how much it hurts!
11) I can't find an appropriate response to sympathy. Even though it's often appreciated.
12) Some people are really self-absorbed
and like to tell you how much your illness inconveniences their own life. I
wouldn’t believe it had it not happened to me. ‘I’m really disappointed you’re
ill today, now my whole day is ruined.’ I actually felt bad!
.13) How many GP receptionists does it take to change a light bulb? Sorry if anyone out there is a GP receptionist; mine are horrendous. They can't ever solve the simplest of queries. I’ve had other people’s prescriptions and other people’s test results.
14) Having long bendy arms means you can apply sun cream to your entire back all by yourself.
15) There is never a time, a place or an environment that I can’t sleep in. Sleeping is my natural state.
16) Waiting rooms are places where
time either goes too quickly or too slowly depending on what your appointment
is. But they’re never the same speed as real life. You realise you wait half your life for a diagnosis so that you can spend even longer waiting for due necessities.
17) There is no cure for EDS!!! But that will never stop people offering you magic/crystals/diets.
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