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Monday 19 December 2011

--You ache from head to toe and you're too exhausted to move...but you still look great!
-- You can hobble like an old woman from the disabled parking bay to the store and people still give you dirty looks.
... -- The question, "Where are my keys?" has been answered with, "In the sink, where you left them."
-- You explain EDS to someone...and they don't believe you and tell you that's too weird to be a real illness.
-- You can absent-mindedly put the cereal box in the fridge...after also absent-mindedly re-arranging a shelf in there so that it will fit.
-- You take more medications than your grandparents...combined.
-- You're incapable of sneaking up on anybody, because people can hear your joints cracking from a mile away.
-- You can relate to The Princess and the Pea.
-- You can also relate to Humpty Dumpty.
-- You get invited to your local pharmacist's Christmas party.
-- You've had doctors refuse to treat you because, simply put, they haven't a clue how.
-- You buy Voltaren, bandages, Tubi-grip, medical tape and Skin-Prep in bulk.
-- You have an entire cupboard just for your splints/braces.
-- You're on a first name basis with the Emergency Department staff at the local hospital.
-- You're the only one in your house who's still awake at 3am, but you're also the only one still asleep at midday.
-- You can sleep from 3am until midday and still feel tired.
-- You start giving your most rebellious joints nicknames.
-- You not only use the Spoon Theory yourself, but your friends and family do, too.
-- You have no room left in your mobile phone for new numbers, because the contacts list is full of doctors.
-- You frequently have to hit "savings" on Eftpos machines instead of "credit", because you can't actually write your signature that day.
-- You have your "bad day clothes" and "good day clothes" at different ends of your wardrobe.
-- You've given up writing to-do lists, because you're too brain-foggy to remember to check them, anyway.
-- It takes you until mid-afternoon just to get ready to leave the house...and then you need to lie down.
-- Every time you're in the Emergency Department, all the student doctors and nurses get called over to study you.
-- You get up, walk into the kitchen, forget why you're there, go back to sit down, remember, walk back into the kitchen, forget why you're there...
-- You've been accused of stealing a mobility scooter while using it to get around a shopping mall.
-- You can tell your friends and family that you've just dislocated something and have to stop and set it...and they act like it's normal.
-- If your friends ask you to meet up next Tuesday, you have to say you'll call them on Tuesday morning to confirm, because you won't know until then whether or not you can go.
-- The 1-to-10 pain scale doesn't apply to you.
-- People ask if you're studying medicine, because you seem to know so much "random medical stuff".
-- You have a scripted, tried and tested response to the line: "But you don't look sick." You can also rattle it off without really even thinking.
-- All you want for Christmas is new collagen.
-- You start your Christmas shopping in October, because shopping during the Christmas period in those crazy crowds is a matter of life and death.
-- You remember holidays like Christmas and Easter by which injuries you had at the time, eg., "Oh yeah, that was the Easter Sunday I was in a sling for the dodgy shoulder and a wheelchair for the dislocated hip..."
-- You need both hands and all your strength to move an empty frying pan and your fear isn't of dropping it, it's of the frying pan taking you down with it.
-- You take a bag everywhere and it's full of pills, bandages, snacks and two bottles of Gatorade.
-- You can relate better to the people at the local retirement village than you can to your friends.
-- If asked for your medical history, you just pull a wad of paper out of your bag with it all typed up for them to photocopy, because listing it all would take hours and you're terrified of forgetting something important, because you're so brain-foggy.
-- It takes you four hours to do something that anyone else can do in one hour and you still can't figure out where those extra three hours went.
-- You factor "bad days" into your plan for the week...then go back and add an extra one in, just in case.
-- When you go on holidays, you take an extra bag just for your medical stuff.
-- You get told off so regularly for putting too much salt on your food that you just can't be bothered explaining low blood pressure to people, anymore.
-- It's easiest to just go to a Hallowe'en party dressed as a mummy, because you're already half-covered in bandages, anyway.
-- You can walk into a restaurant or cafe and be either allergic or intolerant to everything on the menu.
-- You accidentally call your doctor instead of the person you're supposed to be calling, and the reason you give is that you're "on autopilot".
-- You can get your leg all the way up behind your head...but putting it back is another matter.
-- Your dog/cat is overweight because you keep forgetting you've fed him/her and feeding him/her again.
-- You can scratch anywhere on your own back, bite your own elbow and lick the BRIDGE of your nose on Monday, but on Tuesday you can't even tie your own shoelaces.
-- To list your current aches and pains would spend your entire quota of spoons for the day.
-- While people-watching, you realize that you spend more time watching how their joints move than anything else.
-- Your spouse has learned to put your joints and prolapsed colon back in while the nurses run out of the room calling a surgeon.
-- Stairs are more evil than people who talk in the theatre.
-- People constantly comment on how soft your skin is and how lucky you are to have it. You don't even bother explaining how much you'd like to get rid of it if you had the chance.
-- Your family can't understand why you were such a 'normal' child and now you can't walk, or that the party tricks you did as a child cause crippling pain now.
-- You laugh and cry at once at non-Zebras who complain of a sprained ankle once a year, or the months of rehab that come with a single dislocation.
-- You can't remember the last time you went to bed before you were already so tired you were passing out, and it's not because of your party-hard lifestyle. You just can't get any sleep unless you're that desperate.
-- You're torn between using your 'really really good' painkillers at night (when you dislocate constantly as a restless sleeper) or during the day (when you dislocate constantly trying to get around).
-- Every conversation with a doctor about your current medications starts with, 'I hate to feel like I'm drug-seeking...'
-- You're sick to death of hearing, "But you're so young!" whenever you explain EDS to someone. Clearly, the concept of genetic conditions starting at conception is beyond some people.
-- You know exactly which stores in the city are level access, which has tiny little stairs just high enough that you need to avoid them, exactly what's on the top few shelves at the supermarket and where all the disabled toilets are anywhere you go.
-- You've had to defend yourself for using a disabled toilet when not in a wheelchair...because clearly, all disabled people use wheelchairs. You've also had to defend yourself for getting out of your wheelchair and taking a few steps/standing up...because wheelchairs are only for paraplegics, apparently.
-- You've had to argue with your state's disability organisation over what 'variable' means in your condition. To them it means some days you won't need any help and you might eventually get better. To you, it means you have bad days and worse days.
-- People who do not know say, "Wow...are you a Yoga Instructor?" when they see you scratch your back or just move your limbs in general.
-- You wish you got paid in cash every time a doctor, nurse or EMT asked, "So, what hurts?" or, "EDS? What is that? Can you explain it to me?" We would all be millionaires!
-- You can brush your hair/teeth using your feet when your hands/arms/shoulders refuse to co-operate.
-- Soft cotton Pyjamas are your favourite clothes -- so much so that you've bought the same pair of PJ pants in 'daywear' colours such as black, grey and navy, so you can leave the house in them.
-- You now shop online for groceries, because the effort involved in getting in the car, driving, arriving at shop, getting out of c... See, even TYPING it is too much effort.
-- You can use your symptoms (aches, swelling, blood pressure problems) to predict the weather more accurately than the Bureau of Meteorology can with their fancy equipment.
-- Your electricity bill is insanely high, because you can no longer hang clothes out to dry and you need air conditioning all summer and a heater all winter.
-- You read this list and really want to add something funny that's just in the back of your brain...but you can't get to it through all the brain fog.
-- Your friend with a sprained ankle gets more sympathy than you do with your multiple dislocations.
-- When you pass out or get some new, frightening symptoms and, instead of going to the ER or calling an ambulance like a 'normal' person, you just write it down to mention to your specialist at your next appointment, whenever that may be.
-- As a child, your nickname was Rice Crispy, because you snap, crackle and pop.
-- Doctors are scared of you.
-- When two new interns at the childrens hospital ER both come out to grab charts from triage at the same time and then argue over who's not going to get your 3-year-old child's 3 folder thick chart.
-- You keep $50 safe in the house so that on the days when you can't move you can still order pizza to feed your kids.
-- You can relate to everything on this list and add a few of your own!


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