Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Feeling a bit sorry for myself.

I just want to rant for a bit.

I know I shouldn't, but I cant help being so negative on life these days. When I first was diagnosed I thought "Great, At least I have a name for all this pain". But in fact, I now feel much worse about it all than I used to. All the time I thought someday I would get better I was ok. Now I know its this degenerative illness and reading all the posts on here, I cant help but feel a bit down from time to time.

I am a young single man with a health issue that seems to be sliding out of control. Cant help but think that no woman is ever going to want to take on such a burden. I've forgotten whats its like to feel well. The guys at work are playing sports, going out and just generally having a fun life. For me, work is about as much as I can take. I get so tired. Most of the time I just cant wait to get home and crash out.

I cant help but feel that I'm missing out on life.

Oh well. Just wanted to be honest and miserable for a minute.

David.

OH WELL? You act like what you feel is unjustified. It's not. I feel like you -- I may be in my forties, but still, I realize no one would ever want to take me on either -- there are healthy women out there who can participate in life with no difficulties. I honestly feel envious of those who have a spouse when AS hits them. (I guess the rest of us need to find someone in KickAS, or at least someone with AS! "The AS dating service!")

There are 5 very real stages of grief, and believe me, we definitely grieve over what we have lost with AS. Denial, Anger, Bargaining, Depression, and finally, Acceptance. We don't go through them in the same order as others, we can skip steps, repeat steps (demand a re-count!), etc. What you are describing is normal, and I think we all feel the same way at times. We have lost so much, and most basically, the ability to control our future. It's not in our hands anymore -- AS owns a lot of it. All we can do is work on the stuff that's in our control -- exercise, eat well, be pro-active (education, decision making with our doctors, etc), and give the rest to whomever we believe in (higher power, 8-ball, etc).

Don't berate yourself for your feelings. Accept them, look back through the stages and reflect on where you are, where you've been, and focus on what you can do. The rest is out of our hands.

Hope this helps in some small way, hugs,

Patty



(With my daughter (Chris) in Mexico, a month before AS kicked my butt!)

David,

Hang in there. I've had this F'n disease for thirty years. You will have ups and downs. You must get a good understanding Rhuemy who will help you thru these cycles. I've been married 22 yrs. My wife knew my condition when we met. All is not lost. ALWAYS keep a good attitude no matter what. As long as you are breathing there is hope. Remember... if you think you have it bad, think again my friend. You get back what you put out. Keep up the good vibes and someone will come your way. Physical abilties aren't everything. I did cabinet making for 20 yrs but no more. However like you I can still play guitar. Adjust and re-adjust. When your in those dark days recognise them and pull yourself out. Keep moving...

Kerry

Hi David,

I contracted AS 7 yrs ago at the age of 27. I have gone through some of the same thought processes but having my father as a role model really helps me. He has had AS since I was 5-6 yrs old and is fused entirely in the back.

Yes I am still single and I have given up activities I used to enjoy quite a bit and thought I could not live without (i.e. soccer, basketball, camping)....... but my father told me if I can no longer do an activity, find something else to replace it. So I picked other activities to replace those lost.

My fathers best advice to me was to try and stay busy to help keep your mind off the AS some/most of the time. Yes, I can have pain throughout the day, but I think socializing and developing friendships can help. I also believe laughter is the best medicine.... I can laugh at the smallest things, have always been that way, even when I am in pain.

I think you would be surprised, I would not write off a relationship. I actually consider it a small blessing with AS and my social life.... if I can find someone that wants to spend the rest of her life with me she must be marrying me for all the right reasons considering I have AS

A lot of life is all about attitude.

Take care,

Tim

"I had no shoes and complained, until I met a man who had no feet" - Indian Proverb

Hey Tim. I like what your postings say...about the man with no feet. Last Sunday in church, there was a man in a wheelchair with no left arm and no left leg. Sometimes I wonder what I am bitching about.

Hey David. There are a lot of us out there who are still single and young. I am 33 now, and I often wonder if I will find a man to share my life with. But...I was married once, too. Boy...I would much rather be single and miserable than to be with someone who makes me miserable!!! When I left was when I became NOT miserable. And it wasn't until then that my AS began to really bother me.
But anyway, I do understand completely your concern. I will be keeping you in mind and pray that the perfect woman may come along very soon. Whenever it will be, it will be the right time. :-)

Bridget

Hi David,

I hear your pain. I'm going through the same thing as a single guy having just moved to a new city.

My new approach I call: "Getting my head out of my AS"

I blame AS for not having someone to keep warm with this Christmas but then again I often blame AS for everything.

I figure JFK did pretty good and he had major back pain and medical problems.

I figure the secret is to turn that special appreciation we AS folks have for the value of life, the little everyday things, into a super positive attitude, and hope some women with thier special spider sense take notice.

Hi David.

Dont let it get you down. I was diagnosed this year, but at least I now know what it is, that there are others out there with the same thing and there are some things that I can do to make it a little better. As for the ladies ? Well, I am 49, happily living with my girlfriend who is 28 and who I met just as I was going through all the blood tests and x-rays. She supported me through the tough time, waiting for the results and gives me a pretty good massage, moral support and lot of cups of tea when I have a flare up.

David,
Your post sounds just like some that I have posted in the past. And you got basicly the same kinds of replys. Not to hurt anyone's feelings or anything, but with the exception of Patty's, none of the others would help me in the least. Sure, I know that I need to remain positive and focus on the good things, sure I know that other's have it worse than I do, and it certainly doesn't help me to hear that so and so found the greatest romance ever even though they are completely disabled. This is about ME! This is about my feeling alone, feeling not only like nobody would want me, but also that I'm not worth being wanted. This is about my nights alone thinking that the world is totally disjointed from my existence, that nobody anywhere can REALLY understand what I am going through. Well, David, I can! Because I am going through it too.

Johnny

Hi Bridget,

Thanks for the compliment.... I came across the quotation and loved it. It also parallels my dad's advice to me.

I moved to Phoenix a year ago and this Sunday I become an official member of my new church. One of the ladies I went through the class with could barely walk due to a gentic disease effecting her legs..... so yes, I may have it tough, but I would assume she has it much more tough. She is in her early 50's and was just remarried as well (she is also an exceptionally nice lady).

Take care,

Tim

"I had no shoes and complained, until I met a man who had no feet" - Indian Proverb