ASAP

ASAP or Ankylosing Spondylitis Awareness Project has the most fabulous Facebook page that makes me feel a little bit normal when I read what others are dealing with that mirror my issues completely. One of the recent questions posted asked what people with AS would write in a letter to those that don't have it.  It is so amazing how true I find many of these comments.  I copied some of the best below to help others understand (and remind me I am not crazy, at least not when it comes to the way AS affects me.)

-Enjoy being able to do whatever you want without thinking of the consequences
-Sometimes the pain is so bad, I'd rather die than face it another minute
-Sometimes it causes me to scream and cry or bring a grimace to my face
-Don't forget to thank God for the ability to eat without throwing up or walk without a shuffle or limp
-"Sucking it up" is not always an option-sometimes nothing helps
-Don't tell me how to feel, would you tell a cancer patient to "suck it up"?
-Please don't think I'm angry if I don't smile or if I'm short with you that you've done something wrong. Please don't think that I don't love you if I ask you to hug more gently or if you forget I grimace or tear up! Please don't think I'm rude if I don't shake your hand.
-I appreciate your help, but do not pity me and let me ask you for what I need
-My pain tolerance is higher than yours will EVER be
-I pay a price for EVERYTHING I do, just cause I'm "looking" fine today...
-Do not assume that because I'm in pain I should look sick or broken on the outside
-I am terrified at the fact that I will live under a doctors care for the rest of my YOUNG life
-I can't just live carefree
-I must have weekly injections (even daily pills) of all kinds of horrible medicines for the REST OF MY LIFE
-I struggle daily and I don't want pity, just for you to listen if I need you too.
-Don't ask me what I have and then when I start to tell you zone out--you asked so at least act as if you care
-Have YOU ever been in a car wreck or had the flu--how'd you feel? Well, that's how we ASer's feel EVERY SINGLE DAY multiplied by a million at times. Have you ever been sore all over? Thrown your back out? Called in sick? Well, we can't call in sick or we'd never go!
-I hurt NONSTOP. I may feel awful when I wake up, and better at night, Or may wake up and feel great and hurt later on. Or I may feel like CRAP ALL day long. Thats how this disease works, and there is no rhyme or reason.
-We hurt, but we are hopeful. Hopeful that one day we will be understood, and that we DID NOT CHOOSE THIS FUTURE!

-Just because I look young and healthy does not mean I feel young and healthy or that I am. I am not lazy...I am like a crappy pair of rechargable batteries; you use them for 10 - 20 minutes then they are dead and have to recharge for anothe...r hour or two. Or some times you can charge them all day and they only last one hour. Nothing left but a pair of crappy batteries that won't stay charged. 

-Normal people have a head ache, they take Tylenol, and it hopefully goes away. Someone with chronic pain takes an anti-inflammatory. That only dulls the pain a bit. Our pain never leaves us alone, and gets even worse when we rest too long.
-That all we want is to not have to think about how we move and how it might affect us, about how our pain affects the people around us, the people we love, and the people we haven't met yet. 
-How, when entering into a relationship, we have to think about broaching the subject of pain and how it may affect someone else and hope that other person won't run away.
-That we celebrate every day we can still get up, walk up the stairs, go to work, take care of our families, and smile.
-That we are no less and no more than anyone else, just different.