I’m now on medical leave for mild depression and high anxiety. I’ve freaked out way too much about AS, reading websites and stories about progression and projecting myself into a worst case scenario.
As far as pain, I guess most people here would call my bad days good days, but when you’ve been having 1/10 pain for 6 years, a 4/10 or 5/10 pain is panicking. It’s like an old enemy creeping back. Not sure how to deal with the uncertainty anymore.
I’ll have my lab results next Thursday. My CRP was very high when I had uncontrolled inflammation so it’s a pretty accurate indication of my disease activity. Fingers crossed...
Yesterday I played in the park with the kids, climbed all around and ran, and today I’m paying the price in pain. I hate this disease and I hate my stupid body.
I have over-researched things til I put myself in a panic too. I do think it's part of the process of acceptance, so don't be hard on yourself. But in the end I came to terms with it (more or less) by realizing that none of us knows what our futures hold. We just have a disease that causes us to focus on a specific set of possible outcomes, but I have seen enough people's lives turned upside down by sunny-day tragedies and conversely people who were given a death sentence who had a scientifically ground-breaking cure show up just in time to spare them.
Live for today, it's all we know. The older we get the more people share our fate of daily physical pain as chronic and acute problems both add up with the years. I know it's not optimistic, and it's not meant to be. But I figure if all these other people can cope, why can't I? Surely they are not better than me at it.
Some people turn to faith or hopes of cures, but this sort of "Life is like this, yet we all find everyday joys amidst the sorrows" approach is what works best for me.
How do you deal with uncertainty?
Uncertainty? The end result is I deal with the uncertainty by realizing my future was ALWAYS uncertain, and so is yours and so is everybody else's. You can be hit by a bus tomorrow, proverbial or literal.
More of the story is that before AS I dealt periodically with severe bouts of depression and I know from experience that my own mind can do worse to me than my body can. I am very aware of avoiding the darkness if I can at all help it.
The longer version is this: Treat a chronic disease diagnosis like grieving, because in a way it is. You are grieving the life you thought you would have. And that is normal, that is healthy, don't let anyone tell you otherwise. (I ran this by a mental health therapist who agreed, years ago, and confirmed I was on the right path). Like grieving, you go through steps. And like grief, the path is not the same for everyone. You mostly have an arc of denial and bargaining, anger and hurt and acceptance and healing. But as with grief you will wake up one day after months of years of feeling fine and it will hit you again like you just found out yesterday. The pain and the fear and the hurt feelings and anger and frustration, the feeling sorry for yourself.
THIS IS NORMAL! Don't beat yourself up. Say 'Well, this is how I feel today. I might not feel this way tomorrow" and do some physical self-care and some mental self-care, whatever that means for you. And then try to limit the time you allow yourself to dwell and force yourself if you have to do to something meaningful to you, and then tomorrow may be a better day. Or a worse day. But it won't be the same day.
It's an ongoing process. There is no one answer and there is no one path. As long as you are moving on a path it's good. But if you find yourself stuck in a spot on the path and it all looks impossible, reach out and ask for time with a therapist who deals with chronic illness because you owe it to yourself to get the emotional help if you need it.
You may not. I don't think you do right now; you seem to be honest and looking for answers and not stuck. But know that it is there if you need it. There are always options.