Tuesday, February 22, 2011

Being a Zebra

My EDS friend Kitty wrote this about being a Zebra and all that it entails.  Whilst my condition isn't as severe as Kitty's there are many things I so relate to. Getting people to be aware of and understand the condition is an aim of all of us at EDSAUS a Support group for all that have Ehlers Danlos Syndrome and their families/ carers. I have highlighted all the thoughts on Kitty's list that I relate to. Thanks Kitty for sharing this with us all.



You know you're a Zebra when...


--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.



-- You can relate to everything on this list and add a few of your own!