I think EVERYONE needs to reconsider. AS is a LIFELONG disease. You've always had it. You've always had symptoms to one degree or another. Okay, so your symptoms just got so bad that it caused you to be diagnosed - FINALLY! - but you've always "suffered" from it.

There are "some people who have a milder form of the disease than others" is a myth. Some people have less physical damage from the disease, true. But everyone (that I know of) WILL go through good and bad periods of the disease. It all depends on where we are in the flare cycles.

Seven years ago, I would be echoing your post. I was in such a bad way I couldn't imagine ever having a fully functioning life again. An AS flare didn't just disrupt my life - it obliterated it!

But this disease isn't progressive in that regard. Just because 7 years ago I was in so much pain I was considering suicide just to get some relief - or in so much pain I was passing out from it - that doesn't mean that is how it always will be. And it isn't. I'm in remission right now. With medication, a healthy lifestyle and a lot of good luck, I hope to remain in remission for a very long time. I hope to go on to live a "normal" life. It is a new-normal because I recognize where I have to be careful now and how I have to treat aggressively any threat of a flare, but to all outward appearances, I'm as "normal" as anyone else.

I'm crying reading all these answers because somebody finally "gets it".  I used to be a nurse and I'm constantly educating myself on this, but I don't fit the "normal, so where do I fit in?  HERE!!  I am in constant pain.  Vicodin doesn't touch it. For some reason, I can't get anything stronger.  I can't stand up for very long.  I can't walk for very long.  I can't sit for very long.  So, I alternate between the 3..and try to rest as well.  I have stage 3 kidney failure, so I am not allowed to take NSAIDS.  I have had a quadruple bypass, and 2 stents since, so I am not allowed to take any of the medication that will stop the fusions.  Both SI joints are totally fused.  I have one Doctor that tells me that because they are fused, I should not have ANY pain.  I have another Doctor that says because one leg is 1" shorter than the other now, it is causing the pain....if they had done the fusion to stop the pain, they would have made sure that my hips were even, they are not.  But there is nothing they can do for it.  The fatigue is horrible.  I go out in the sun, I have rashes on my face, and whatever else is exposed.  They won't give me predisone any more because of my diabetes.  I don't seem to have "flares" as other people discribe...mine just never goes away.  If I could live in a hot tub, I would be happy.  I totally understand people that give up.  This is not a way of life.  I can't figure out a way to adjust to it, because "it" always seems to be one step ahead of me.  Sorry for my rant.......

You know I actually find time to workout 4-5 days a week and I have an amazing powerful physic. (I avoid exercises that directly involve the lower back.) Everyone that I talk to about my AS doesn't know how I actually feel but my face usually shows it because I don't smile much. Sometimes I feel like I am totally automated going though life on auto pilot. Doing the same old routines, knowing what I can do, knowing what I can't do. To all appearances I look normal till I have to bend down to pick something up or reach up above my head for extended periods of time. I know people don't believe me when I tell them that I can't do something or shouldn't do something because of lack of ability due to my AS but that is when I look at my self and smile and say inwardly forget them they don't know nothing of what I am going though.

I used to be an athlete, and I mean I did extreme amounts of gym time, weightlifting, competitive volleyball for years (on scholarship in college).    My low back started to scream in my early 20s for no apparent reason and it took years to settle down.  Even after that I got back in the gym daily and did a sprint-distance triathlon which required six months of heavy training.  Then I did six months of daily kickboxing with a heavy bag and daily weightlifting.   I was in great shape.  It took years of being in pain constantly for me to finally get directed to a rheumatologist and get treatment.

Now?  I haven't been in a gym in years.   I have gained lots of weight and other than walking the dog, I barely get any exercise at all.   It makes me sad to think about the good ol' days when I felt strong and in shape.

After three years of managing AS symptoms I am finally exploring some safe forms of excercise - yoga, NIA, and possibly a water movement class for people with limited mobility.  I am going to try to fight through the pain to see if some consistent light exercise will help, and maybe to get a little muscle tone back!  

I am constantly in pain too.  Every morning I wake up and do a systems check:  Did that right knee start hurting again for no reason?  Can I walk on my feet yet or do I need to stretch for a while first?  How is the back?  Do I need to take my pain meds and muscle relaxant first and wait for them to kick in before trying to get out of bed?

I don't see how people with AS can live a "normal" life when every bit of physical exertion is painful and an effort.    I struggle to appear normal and try to figure out how to explain to people at work why I need to take the elevator at work even for just one floor, and why I have a disabled parking pass, and why I try to work from home when I am flaring.   Is that a "normal life"?

I use to do a lot of things.  Too many to list.  I can not live a "normal" life and have had to make adjustments in my life.  When I am at work there are times where I cannot think right because I am so fatigued from a sleepless night of pain.  Or more recently in a flare so bad that I had to buy a cane.  It is easy for researchers to say live a normal life if they do not have the disease or have to live a life of injecting drugs and popping pills.  Wish those people could spend a month or two in our shoes (oh, my ortho's cost 100 buck) and see what normal is to an AS person.

I just turned 30 I used to be a Paramedic & also went back to school to do Ultrasound of the heart and finished school with great grades but couldn't do the 12 hour clinical's in my externship  so couldn't get my license I know what you mean this disease has ruined my life. I am going to apply for disability since i can no longer work due to being in pain and the fatigue but i know how difficult this is going to be due to my age and i have no fusions etc.
My poor husband is a Paramedic and also teaches others to be a Paramedic and it kills me having to watch him work 2 jobs and pick up extra shifts when we need more cash and i can do nothing to help. So i completely agree it makes me angry when some people say well people with RA work. I am young only 30 i have a husband and a wonderful son and want to live my life but don't know how to do that yet along with having AS. You are not alone and finding this site has helped me more than i can explain.

If anyone finds out what "normal" is for someone with AS, I would love to know.  I realize our normal is different than others but I have really had to change my normal hustle and bustle schedule to incorporate the rest needed daily.  I wish the best for you!

I think this refers to those who dont have ot too bad. Everyone is different and some people do seem to have fewer problems than other. I have had AS so long now I find it difficult to remember a time when I was "normal" when going out anywhere did not involved making sure how I get there, that I will get a seat when I am there, that I can get home safely, that if I go shopping there are plenty places to have a seat etc etc AS is my life and everything is worked round it

I hear you. Most of the websites I've seen that define AS all seem to pick up on the same PR materials. It sounds so benign. I'm sure there are people who can lead very normal lives with AS, but I'm not sure that they're the majority.

I haven't been in the 'normal' group for years, but I'm still aggressively pursuing an acceptable niche in life. Not quite normal, but livable. That would be great.

I was recently diagnosed - in April - after several reaccuring bouts of iritis - i started meds for help the pain in May - Simponi - I have an extremely busy life - three small kids - and run my own biz - I REFUSE to allow the exhaustion and pain to control my life.  I try to walk and exercise a few times a week to keep things moving and take an antiinflammatory to help -SORT OF - i suppose that i have not truly accpeted this disease and its aliments nor have I truly excepted the dibilitating components.  I feel as if i continue to push through and persevere i can win.  Does that make sense?  I have a hard time accepting that the pain and exhaustion control your lives - i am just not prepared to accpet it at this point - does anyone esle feel this way?  How are you adapting without giving up?

Maybe "terminal" like cancer, would be better.  An end to the pain...  I feel that way sometimes.

Great post...Sometimes only spouses think that way I guess...people just have No clue what it's like to live with chronic pain...I can totally understand why people decide to pack in sometimes..but you just have to have hope..You have to fight it each and every day....It helps when you have even just one person truly understand...If you feel like your getting depressed talk to someone....Good luck.....feel free if you need to talk

I always laugh at the saying "normal is just a setting on the dryer".....lol
U gotta keep laughing to make it through the pain sometimes...

When they say a normal life they mean an adjusted normal life there are always things you wont be able to do so you adjust . I have had AS 49 years I have severe Kyphosis a fully fused neck and damaged joints but I lead a normal life.
Whats normal is defined by each person whats normal for me wont be normal for you remember every AS patient is different.

Three years and 9 months post diagnosis i feel that I live my new "normal".  I had a severe case when I was diagnosed but I have been able to control it with TNF's, exercise, and a good diet.  I still have some pain but I just keep chugging along.  I have been able to go back to most things I like to do like hiking in the mountains, kayaking, but I just am a little more careful since I am fused.  I don't want to fracture my spine and become paralized.  I think I take rest breaks and sleep more than I use to.  I don't think someone with AS that doesn't have access to a great doctor and proper treatment could live a "normal" life.  I know I sure couldn't have.

I know what you mean.  I don't see how anyone with AS except the mildest problems can live a normal life.  My children do not know what mommy was like before AS. Telling them I can't pick you up, I can't do this or that, etc... That is NOT a normal life.  Unfortunately I do not have insurance and it is impossible for me to be covered at a acceptable price so I don't know about the doctors and the meds, and the shots... But I do know that  I have had to cut back on all the things I enjoy because of this and I don't care what those websites say  I know I don't live a normal life.  
I believe that talking to others who have AS  and how they handle it is the best thing I've found because they don't BS you and make everything seem so not that bad. They know the pain and what it does to their lives more than the "experts" who write about but do not live with AS.  Find websites like this  and  keep educating yourself on AS that way you know what  to look for and if need be fight for proper treatment.

"Normal" is a relative term. We have a new "normal". Life will never go back to pre-AS days. Now, we take meds, restrict our activities, go through flares, see our doctors, spend lots of money on biologics, etc.
I think the important thing is to be thankful for everything we have, and everything we can still do. Some days are better than others. Enjoy them. It could always be worse. It's not cancer. It's not terminal. We can still love and be loved.
Hang in there. :)