Spondylitis Association of America Forums General Discussion Young Adults - The 20-Something Club Accepting your fate...

Hi all,
I've had a hard time lately dealing with my pain and accepting what is to come. I think it's been especially hard on me recently because I've been going through periods where it's not so bad. But when it comes back, it hits me like a ton of bricks. I get used to feeling like an almost normal 22 year old, them it hits me and I lose my sanity. I usually break down into a pity party for a short time, then find a way to suck it up.

It's also hard when people know what's going on. My boss and my boyfriend are good examples. They care about me, my pain and my wellbeing so it is nothing they do wrong...but sometimes I get so frustrated. I want and accept the help when I'm in pain and need it. But when I'm doing okay, they almost try to force me to accept help. They are not at fault, they cannot tell how bad or not bad the pain is that day and are only trying to help. But I don't want to feel disabled and helpless at this age. I guess it's really all in my head. I should be appreciative, but it gets old feeling like you always need help, or for others to take care of you, slow down the pace, give you a break.

My boyfriend and I love hiking and camping. Besides scheduling conflicts, my pain has also really gotten in the way. He keeps asking when we will go, and sadly my answer is when the Remicade starts helping. I feel terrible that I'm keeping him from what he loves to do, he won't really go without me. And I'm also sad that summer is almost over and we've only camped twice.

I guess this is more of a vent than a question...but here is my question:

How and when do you finally accept that this is life as we know it? That we won't always be able to do what we want and love to do? That we are not typical 20somethings and our lives need to be..modified to fit our abilities and disabilities?

I don't know that I'll ever accept it. Nor do I think accepting it means lying down and letting it kill me. Somedays this diagnosis feels like a death sentence, and some days I realize I just have to do the best I can.

Really, I'm just scared.

Hi, Emmie: I hope you don't mind my speaking up here, as I'm not in my 20's (by a long shot!). But what you expressed really struck home to me. I think the issue of "accepting our fate" affects all of us. To suddenly find that we have to deal with a new self-image of ourselves, that our dreams and passions of what we love to do and who we are is dying before our eyes.

It IS scary! I alternate between grieving for what I have lost, and struggling to find some new kind of satisfaction with my life that will fit within my new limitations. And there is always the hope and prayer that we hold inside that one of the medications we try will turn everything around and give us our lives back.

I think this a struggle that we will be dealing with for the rest of our lives - trying to find a new balance and searching for what joy we can find. Appreciating our "good" days and finding ways to survive the difficult ones. It will require us to discover new strengths inside ourselves to make it through each day.

I've been dealing with this disease for two years, and I'm still struggling with all the emotions that it brings up. I wish you and everyone else here the very best!

I don't think it is necessarily our fate to be in pain and limited in life. Lots of people find the right medication and improve to the extent where they can live normally. I haven't yet but I am aiming for that and I really refuse to entertain the notion that I won't eventually get better. I really think that, given the range of available new medications for this disease, you will hit upon the right one and be able to live normally or close to it. You just started Remicade recently. Try not to despair while you are waiting for it to work. I'm sure we're all keeping our fingers crossed for you.

I too am older than 20 but your true emotion comes through here, so I am responding in that way to you.There is a long answer and a short answer.

Here's the long 1.
In my twenties when I could not walk due to pain I hobbled. When I could not hobble, I took time from work. I used heat to get back to work/ease my pain. I kept my head up and I REFUSED to alter my course. I talked to a therapist each week. A good one.

I kept walking and working. When I could not bend my joints I forced my body to work in spite of the pain. When I could not push through the pain I cried and was scared. I found small rewards and I built upon each step to reward my accomplishment. I was uncompromising, I was mean, I was angry I was winning.

When I could not see from one eye, I worked harder and doubled my accuracy. When I really could not see from one eye, I had the cornea replaced.

When my heart went into a super fast rate I put my head in ice water or I held my breath or I took a pill and it returned to a regular rate. When it would not return to a regular rate any more, I went to the ER and then I asked a cardiac doctor to fix it. He did fix it on the 2nd try.

The incredible awfulness of this diagnosis became a personal threat. When I couldn't I did. When I couldn't I fell down and got up and sometimes I could not and I didn't. I waited until I could.

When Remicade came along I had learned to do EXACTLY what I wanted and was born to do.

Short Answer
We have incredible resources within us. Be yourself, fight as best you possibly can, reward yourself and Win.

WhiteCell, thank you for posting that. You are really an inspiration to me.

Thanks. My dad did the same for me.

Thank you all. Maybe I should've posted that on the regular forum too. I posted it here to maybe get advice from people my age dealing with the same struggles. But really, most of the older members went through it at my age, too. I'd still love to see others responses, as everyone's experiences are different.

The day I posted that, I was very down. Today, I'm okay. Most days I'm okay. I feel the rib pain coming on, but I have 2 10-hour work days ahead of me and can't let much slow me down. When I am working, I force through as you said, Whitecell. I guess it is just nighttime, when I am wiped from my long day, that it gets to me. I rarely have the time to slow down and reflect on it. So it gets bottled up and when I do have time to think about it, it hits me hard. Since my only day off is dedicated to errands, appointments, infusions and occasionally sleeping in a bit...there isn't really time for a therapist now. But I'd really like to see one in the future. Especially if the pain gets worse and the disease progresses. I know I'll need it then.

But for now, this is my therapy. Venting to strangers and learning from their experiences. So keep 'em coming!

Sounds like you have the skills to win =)

Thanks for your honesty and candor as well....

Sounds like you have the skills to win =)

Thanks for your honesty and candor as well....

Emmie, I'm the same way. The days when I'm busy and have to push through to do what I have to do are typically my cheeriest (assuming I'm capable of pushing through; if not they're my lowest days). The days when I have sizeable chunks of free time are when I get the most mopey. Of course, the days I push through so much that I hardly feel any pain (I specifically mean the adrenaline rush of working weddings) also tend to lead to a night spent wailing and carrying on from the pain of pushing myself *too much*. It's a lovely balancing act.

It's hard to look at the potential future we face. I do my best to live in today in that aspect, though worst case scenarios flit around my head anyway. We can be pleasantly surprised and abundantly grateful if and when we improve or at least do not worsen with time, and as prepared as we can be if the worst does come to fruition.

I know what you're feeling! Sometimes I think I'll never get my vision back, even if I get rid of the iritis completely. Sometimes I look ahead to the future and hope I don't have to be on social security disability like my Mom is, although at least then I would be guaranteed health insurance! I get so jealous of healthy kids my age with their perfect genes who ruin themselves with tobacco and alcohol and whatever other drugs and think; "How could you do that to yourself? Do you have any idea what you have?!"

I like the approach of taking things one day at a time and trying not to look too far ahead. A phrase I've been repeating to myself: "I may not win the game, I may not even finish, but at least right now in this moment, I am still playing, and I am going to keep playing." I'm still going to continue doing what I'm doing, keep moving forward, because no one knows how this disease is going to turn out.

Emmie,

I have been dealing with the same thing: how do you accept it all? I had both my hips replaced several months ago because they had completely fused. Everyone thought it was going to "fix" me. But it didn't take the AS away or the scoliosis or the pain. My sister keeps bugging me to do my therapy and try to stand straighter, but sometimes the pain is bad enough I can't, I have to take a break. She (or any other normal, healthy person) doesn't understand that I will have pain everyday for the rest of my life. How do I deal with that, is it possible to accept?
I don't keep very busy during the day, I am at home, I don't get out much, but I don't allow to let myself get down or mopey during the day because it wears me out and it upsets my sister (although she thinks nothing of it when she is whiney and mopey because her boyfriend is gone on vacation, gee I just wish I had a couple of friends). So the depression and crap always hit me at night, I allow myself to feel down, I have to let it out somehow.
Sometimes I wonder if anything will ever come of my life. Sometimes I wonder how to really lve with this stupid disease. But then in another way I feel very blessed to have this disease and to have gone through everything I have. I have learned so much, it has made me who I am today.

hey emmie, well this post breaks my heart. it reminds me of where i have come from. i am 34 now and have gone through the 'why me?' question. in fact i am still coming through it now.

in the end i have had to accept it and accept i may need help with meds, support from loved ones . everyone has their cross to bear kind of thing and this is mine.

i know having AS comes with its own set of problems. pain is one thing, stress over side effects from meds is another. the fatigue etc. i too, as another poster said, take all this one day at a time. it is all you can do.

keep your chin up and get strength from where ever you can.

all the best. xx

I'm 29 and can totally relate. I haven't been officially been diagnosed yet, but I've been dealing with chronic pain, among other symptoms, since I was about your age. I just had my first, and probably NOT last, spine surgery on July 6th...at 29 years old. I feel like I'm trapped in the body of an 80-year old. In fact, my 99-year old grandfather can probably run laps around me.

On the one hand, I want to do things myself. I want to be the wife/mother/daughter/sister/etc, that I think I should be at my age. On the other hand, I end up pushing myself too far and end up in bed the entire day. I feel bad because I've got 3 children, and I feel that they are missing out on their mommy. My 10-year old son is so used to seeing his mother in and out of the hospital constantly...it's become the norm to him, and I HATE that.

For me, it's difficult finding a balance between doing things on my own and constantly letting others help me. I love my husband dearly and I love the fact that he's so willing to help. He really does do a lot. But I don't want to have to rely on him for everything.

It's hard to say when you'll finally accept your limitations, to be honest. As I said earlier, I've been dealing with this for about 7 years now, and I still have days I don't want to accept it. But for me, a lot of it has to do with having kids to take care of, and I feel like it's not an option for me to lay down and let my illness get the best of me. My children deserve better than that. They help to keep me motivated. When I start to feel sad about the fact that I am not able to do the things I want to do, I just look at them and watch them laughing and playing, and I know it'll all be okay.

I can relate to many of you. I feel that age 29, that I have lost and had to give up some things I used to enjoy and some of my dreams. I was officially diagnosed with AS a year ago this month. Shortly after my 25th birthday, I started having problems and saw many doctors who could not figure out what was wrong with me. I felt so angry that I missed out on having fun doing normal things that most people in their twenties normally do (taking trips with friends, dating, being able to finish college in four or five years). My energy level was low and I felt like a 90 year old instead of a twentysomething.

Before I started having any problems, I used to run, do dancing areobics (which was really fun) and spent hours on my trampoline during my teens. Basically, I was very active and could out run some of the other kids in my gym class on the track.

I also had dreams of finishing college by age 26 and getting married and having a lot of children. My health problems slowed me down, but I finally got my four year degree at the age of 29. I have not had much of a chance to go out on dates yet and I wonder how my AS will get in the way of relationships. I have decided that when the time comes for children that I will adopt ( I do not want to stop treatment so I can have kids of my own).

I have had to give up runnning and doing my dance areobics since I started having symptoms of AS. It was hard for me to accept it at first, but at least I can swim, do yoga, and walk.

Most of my friends never had to deal with life altering conditions before and they do not have any idea of what it is like to have AS or deal with doctors. Some of my friends do ask questions about what my treatments are like, how often I have to get the treatments, and what limitations I have. I have met one other woman in one of my classes (who has RA), and she had an idea of what I have to go through. She was very understanding also.

On a happier note, my treatments have made a big difference of how I feel and I can enjoy myself again. Even though I still have limitations, I feel grateful for my treatments. I tell my friends who do not have to deal with health problems and treatments at such a young age that they are lucky.

It would be wonderful if a cure is found for AS and other diseases.

I'm very emotional about this topic, I first remember hurting my back when I was 12. I still played sports (soccer, baseball) through High School but I would have to lie down after the games because of bad spasms. I had to quit playing golf in my early 20's I could'nt walk the next day. By the time I was 30 I had pain and loss of feeling in one leg. I had a fusion L5-S1 at 32 and had the screws removed at 33 because of so much pain. I could get out of bed but couldn't sit in a chair for more than 20 min. I layed down most of the day. It was very hard to walk and still is. My wife of more than a dozen yrs. left calling all the negative things I would not say here.
I have a daughter and could not let her see her father be a big loser like my X called me in front of her. I went to therapy in the pool, best med ever, went back to college part time at first. I layed in my car between classes, at the college handicap center they suggested that I tape the lectures because I told them I couldn't write everything down because of the pain. So I did and at the age of 40 I had a BA and Teaching Credential and a job at a new High School.
I was on SSA Disability until the teaching job started with a "Degenerative Spine Disorder" later it was called end stage AS when I had to "accept my fate again" at 48yrs.
Now at 53 I'm still acepting my fate, but I'm back at the therapy pool building stregnth so I can go camping and fishing enjoying nature in Lake Tahoe. I still can't walk around the block or take much of a hike and that is what girls do here. I do hurt very much, on Remicade and 15 other pills and get awakened just about everynight from my sleep or can't fall asleep, but I look out my window at the beautiful forest, thank God and accept my fate.