October 30th is the day I was diagnosed with Ankylosing Spondylitis, back in 2012, so this time of year always makes me feel a little reflective.
That day seems like a very long time ago. I can't really remember what is was like before, in that hazy past when I was healthy, when chronic pain and illness weren't part of my daily life. Of course, it's not like I suddenly got sick on that day in October. I had been dealing with back pain for years, and some other new symptoms for a few months. The diagnosis just put a label on what was happening with my body (which was helpful) and gave me a lot of new things to worry about (not as helpful). It wasn't until the Spring of 2013 that things started getting a lot worse and I began to see in real terms how this disease was going to change my life.
So, it's not like my life changed all at once on October 30th, 2012, but still - it's a date I always remember, and it seems like a good time to give my loved ones an honest update on what's been going on with me. I know it has been a while.
I wish I had made the time to write a post in August or September, because it would have been great to share good news with all of you. Instead, I share it in retrospect, with a tinge of sadness mixed in.
For almost two months, I felt better. Probably the best I've felt in two and a half years. It was glorious. My feet were getting better. I had more energy. I would wake up in the morning feeling ok about life. I could spend a day at work and come home with some energy left to make dinner or spend time with my kids. I actually wanted to do things - hang out with friends, take on new projects at work, clean out the fridge, go on dates with my husband.
It was such a blessing to be feeling good when we went to Philadelphia for the World Meeting of Families. When we made those plans earlier in the year, I had mentally prepared myself for a lot of painful time in the car (my body does not like all that time sitting still in a small space), moving around the conference in a wheelchair, and probably needing to spend a few days of the trip in bed recovering from activities. Instead, I felt pretty good. We had some pretty long days, getting up early to drive into Philadelphia, spending the whole day at the conference, and then driving home late in the evening. But my body held up really well. Of course, "really well" for me was still not what you might consider normal - I still did the Papal Mass in a wheelchair and dealt with some significant pain in the car and when trying to sleep in beds other than my own. But it was a definite improvement.
My health and my pain levels have gone up and down over the course of these past few years, and I've gotten used to those fluctuations. I learned a while ago that it isn't helpful to grab onto one good day or week and wonder "Am I getting better? Is something I'm doing actually helping? Could I be turning the corner?" That only leads to a lot of disappointment. Instead, I've trained myself to appreciate good days but not hold on to them too tightly or expect the next day to be good too.
But I felt better for most of August. And then for most of September too. And I was beginning to think, "Hey, maybe I really am getting better!" I started a new medication at the beginning of August, and I was feeling hopeful that maybe this one was actually working. I didn't say anything to anyone for a while, not wanting to jinx it. Without really talking about it too much, Mike and I started to shift some things in our family routine: I started getting up earlier to help with the kids in the morning, so that Mike could go for a run. When we went to hang out with friends who live four blocks away, I realized I could walk to their house instead of taking the car. I started working more hours and spending less time resting. I tried to remember to be grateful for every good day, while keeping in mind that it might not last.
And it didn't. It wasn't a sudden change, just a slight shift, day by day. Needing to go straight to bed after a day at work. Sitting down to brush my teeth instead of standing. Wincing with knee pain when I walked up the stairs. Choosing not to blow dry my hair because my shoulders hurt too much. Feeling the pain of my feet resting on the ground when I sit. Long, long nights that leave me exhausted and sad. The feeling of "how am I going to make it through this day?" when I get up in the morning, It's all familiar, of course. Nothing new. But it was gone for a while, and somehow that makes it harder to handle right now.
I know what I need to do: I need to be grateful for those weeks that were so good, to treasure them and treat them as a beautiful gift. I need to adjust things in our routine, let certain things go, stop trying to do so much. I need to ask for help. I need to be careful about how I spend my time and energy, so I have enough left for what is most important. I need to get out of my own head, push aside the self-pity, and focus on generously loving others. Mostly, I need to turn to God with all of this and trust Him to take care of me.
So, I am working on doing those things. It's a hard moment now, but I know that my emotions will settle over time. I know that I have my amazing husband, children, family, friends, and faith community to support me. I know that life is hard for a lot of people in a lot of different ways, and I experience this cross in the midst of a life full of great blessings. I know a lot more now than I did three years ago, and I am grateful for that.
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On our pilgrimage to the World Meeting of Families, our family learned and prayed this daily offering, written by Saint Ignatius. We continue to pray it together when we drive to work and school in the morning, and I am so grateful that I have these words ingrained in my mind and heart. Perhaps God knew just what I would need right now.
Take, Lord, and receive
all my liberty, my memory, my understanding,
and my entire will.
All I have and call my own.
You have given all to me.
To you, Lord, I return it.
Everything is yours;
do with it what you will.
Give me only your love and your grace.
That is enough for me.
Amen to that.
