Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group This disease changes you

I for one have found this post very touching and insightful.

When I first got AS it crept on to start with and then attaked me very aggressively. I had severe pain which interferred with being able to sleep, walk, drive and work for a relatively short period of time, when compared to the others that have responed to this post.

3 months after I was diagnosed with AS it went into remission by following the NSD. It stayed in remission for 10 years and I am currently having a flare.

I think the intense period of dehabilitation and pain, followed relatively quickly by complete remission taught me some important lessons. That is to say bought me up short!

It has given me extreme empathy for people living with chronic illness in a way you can't imagine if you have never been there.

It has made me realise how precious and fragile life is. To enjoy the good times with every fibre in your being and to struggle on through the bad times, trusting there will be good times ahead.

I was already an optimistic, positive person but that has escalated out of control! I am impossibly upbeat in the face of any adversity because somehow I am strong in my faith that everything will be OK.

I have an overwhelming need to help and support others who are worse off that me. That's what led me to join this site.

I have not had to suffer this disease for the duration others have and therefore I have a very different outlook on things.

It's easy to be positive when you are not suffering every single day of your life.

I want to send everyone a huge hug

I get peed off with the utter triviliality and banality of everyday TV and the people for whom it has become their 'life'. No interest in current affairs, or in watching a good documentary or even in reading a good and well constructed book, but this trivia IS their *life. So, the effect is that conversation is...aaahhhhhhh

Yes, I have a short fuse, as I try to focus on what is in hand, and don't anyone interrupt my thought process, pain of whiplash... Steve hit the nutshell: "...when the pain is exhausitng my fuse is short just out of frustration or inability to do something simple. I'm not actually angry I'm just exerting so much effort and concentration to keep focused on the task that an interruption, or even something like a conversation, feels like, and is work, to a level that others don't understand." Bulls eye SteveC!

Off topic but I just have to say this.
Tink you are an amazing wonderful person. You with the others have helped me in so many ways in the past 2 weeks.
You have patiently listened to my complaints and given me the support I dearly needed.
I honestly believe I dont know how I would have survived the past 2 weeks and still have a husband if it wasnt for everyone here and especialy you Tink.

I never thought about whether it did change me? I guess it did. The point on being on short fuse is right. Pain and less of rest due to the immense pain (sleepless nights, tired muscles, fatigue).
Other than that it made me feel that time is short and lot of work to do. Made me more focused. Made me hurry more. More intense to do the work i set out for. The fear when this disease would strike me, it could stop me in my steps makes me hurry.
I realized that you could kill mild to sever pain with a focused approach. The pain does not go away but it does make the brain feel so
Of course it made me more human, more perceptive to the pain of others. I do not mock any one since you dont know what the other is going through.

What you all have said makes such sense, like on the front page of this site, I've been missing pieces of the puzzle. One by one they are coming together. I never would have guessed that the pieces would come from all over the world, one post at a time. It must be a real struggle for Marty to be as pleasant as he has been lately. My heart aches for him. I will keep your words in mind as we go about our days left together. Thank you.

Jeanne

It's funny, the more I think about this question, the harder it becomes to answer. Here's the thing, I, like many of us, lived with this disease for many years before being diagnosed 8.5 years ago. The most profound changes in me happened after my diagnosis.

I've always had a short fuse and I've always been quite hard on myself (and often others). Now, I realize that I don't know what it's like to live without this AS affecting me. To some degree or other, at least since my teens, it always has. I often wonder what I would have been like had I not had all the unexplained (or incorrectly explained) pain and tension. When I look back on those years and how I was, I'm torn between awe at what I accomplished and shame at my horrible moods.

When I was diagnosed, a whole new realm of emotions reared their heads. I've always lived my life denying fear. Now, it impels me to do the things I love to do. The thing is, it's one thing to live with constant pain, tell yourself it's a dance injury, or you're carrying too much emotional baggage, and once that injury heals, once you've finally let go of all the negative emotions, the pain will go away. Then, one day, you find out the pain will probably never go away. Indeed, it might just make it so you can't do anything anymore, let alone the things most important to you. You might not even be able to work, to provide for yourself and those you love. There's a lot of fear for the future. Being the ornery sort I tend to be, I decided that I would use that fear. I figured that if AS might make it so I can't dance, can't perform, can't sing, can't do all the things that make my life worth living, I'm going to do them all now, as much as possible. My fear for the future trumps my general fear of life, and I use it to propel me forward fearlessly. (In my own mind, anyway )

Anger. Anger is a big part of it and seems to go cheek by jowl with the fear. Longterm pain causes anger. This is truly bad when, like me, anger has fueled a lot of your life. Now, I realize that my innate anger was actually caused by the longterm pain, but knowing that... Once you have the diagnosis, you have permission to be sick, you know? Which makes the anger OK, because it has a reason now and it's a valid reason. One day, it was brought home quite forcefully how unfair that is because the problem with anger is that it infects everything around it. Sure, be angry that you have this disease and the unfairness of it. Be angry that you have to take meds the rest of your life (or make drastic lifestyle changes). Be angry that you live with pain and it impacts everything you do. But find an outlet for that anger that doesn't involve other human beings (a nerf bat comes to mind). This pain is not anyone's fault. The people in our lives, the people we meet every day didn't cause it. So, they should not have to bear the brunt of it simply by virtue of being in the same space at the same time. I had to learn to deal with that anger, to let it go, to accept I have every right to be angry, but I have no right to vent that anger on people who's only mistake is to love me (or have to work with me every day).

Depression. Dear god, it's hard not to be depressed. I don't mean every moment of every day, and certainly, since I started biologic treatments I haven't needed anti-depressants (I have my own theories about that). I've been depressed most of my life, starting in childhood. And I've always beat myself up about it, because really, I had no actual reason to be depressed. I had a truly dysfunctional, but loving family. I had an education in the field that fuels part of my passion. I had friends. I couldn't understand why I was so damned sad all the time (and I berated myself for it). Now, I know that this goes right along with pain and inflammation, and it's been affecting me far longer than the actual pain. Therapy and anti-depressants got me through that.

So, how has this disease changed me? I don't know, because many of my, shall we say, neuroses, already existed. It was the diagnosis that changed me. First, negatively, then, once I began to get a grip, very positively.

I am much more compassionate and understanding of human failing. I still get angry quite easily, but have learned when and where to vent that anger. And I've realized quite recently that the things that used to fill me with an impotent anger, no longer do. They are simply not worth the energy. I live a much healthier lifestyle now than before; eating healthier foods for me, doing pilates, keeping myself moving. I have learned to fuel my passions through the doing of those passions, rather than through anger at what I perceived as lack of success.

I have learned what acceptance truly means, for acceptance was a huge key to much of what I've learned. I have learned to accept my disease, to accept the pain. That doesn't mean I succumb to them, that I surrender (I shall never surrender), but it does mean acknowledging that they are a part of my life, just like singing, just like loving my family and my sweetie, they are a part of what makes up the whole of who I am. They are not all I am. Once I recognized that, it became easier to move forward and let go.

There is so much more and your question must have been extremely well-timed for me, because if I don't stop now, this post could become a tome.

I'm glad Marty has you in his life to stand by him.

Hugs,

Darrel, I was about to say the exact thing. Steve has a way of putting into words things I can't seem to.
Cindy

"Once you have the diagnosis, you have permission to be sick, you know?"


I love this Kat...(haven't figured the fancy quote box thing out yet!)

I've always wondered why it matters so much to me that the doctors finally dx me with something...I need permission to be sick. I get it now, thanks.

Steve really did nail it, so to speak, on this one...
I'm more patient with my kids, and less patient with my husband's impatience with the kids, I'm more understanding of others in pain, even though I don't fully understand mine! I more fully appreciate what I can do, while I'm struggling with the things that I can't do so well anymore.
Jeez, I sound kinda bipolar? But you get the picture.
I'm really getting a clearer picture, each day, of what's important to me. And I'm pretty sure I have the constant pain to 'thank' for that.

PT

Hey Kat, Your first sentence pretty much expains how I have been reacting to this question. Anyways, here we go, I'll give it a shot. With me, my biggest problem, I think, is the fact that I had AS for 20 years before a diagnosis. I had been told that I had RA, at that time there was only NSAIDS. I was an athlete and thought my aches and pains were from that. 15 years ago started the downward spiral. My symptoms forced me back to a Rheumatologist who immediately diagnosed me with AS. Apperantly I let things go so long that the damage was done. Anyways, sorry this is so long I'm not usually this long winded, but this story is the reason for my emotional struggles. I have trouble with acceptance. All those years I was able to work through the changes my body was demanding. The last 10 years has been a constant battle. Things that are the hardest, for me anyways, trying to appear "normal" to others. Accepting the things I can no longer do, hiking, hunting, working doing things on a whim. Then you have the whole marrital relationship that does change no matter what people tell you. My husband retired the same year I had to quit and go on SSD, that's another whole humiliating part, we had plans for our retirement and that has had to all change because I am not able to do those things now. Loosing my "identity" is a tough one. People always knew me as an athlete, a workaholic, an energizer bunny. Now on disability and walk with a cane I don't know who I am anymore. Then there is the pain, oh yes, that's a topic for another discussion. Finding myself struggling with the daily pain now because of the damage that continues after 35 years of this has broken my spirit and can't stop beating myself up because I consider this a weakness flaw of the person I am. Life goes on for everyone around you but yours changes. Relationships change. These are all things that encompas living with AS. There's more, much more, but I think I will stop here for now.
Cindy

Sure does make me nervous.. Maybe it was a very big nail so there was no missin' it either that or I just exhausted my one moment of lucidity and wisdom and there are no royalties or big payday.