Uncertainty

I've always been a planner, a scheduler, a maker of clear daily To Do lists (yes, those are all just nice ways of saying I'm a control freak). I've been a really reliable wife, parent, employee, and friend. So one of the things that's most difficult for me in dealing with this illness is the uncertainty that comes along with it.

I don't really know how I'm going to feel on any given day. Yes, there are some clues - If I spent time on my feet the day before, they're likely to be really sensitive the next day, or if I expended a lot of energy on family activities or church or socializing or housework, I'm likely to feel more drained and be dragging through the day. If my back and hips were bad going to sleep, it's more likely they'll be bad in the morning. If I don't sleep much because some kind of pain was keeping me up, my energy level is going to be lower and I'm likely to have a higher pain level. But even with all those things, I still don't really know what to expect. (One night last week, I slept for four solid hours straight and I woke up with a ton of energy. I have no idea why I was able to sleep that night, but I got more done around the house that next day than I had the whole previous week. It was awesome). Sometimes I do really well at work, and sometimes I'm so uncomfortable it's hard to focus and I'm just watching the clock until I can head home and lie down.

So, I have to build a lot of flexibility into my day and into my life, since I never really know what I'll be able to do and what I won't. (Sometimes I wonder what this variability looks like from the outside - One time you see me I'm limping with a cane and looking really run-down, and then a few days later, I'm walking smoothly and looking healthy and happy. It's bizarre, I know.) Mike has been so wonderful about this. I know it's not easy coming home and not knowing whether you'll find a clean house, laundry done, and dinner in the oven, or your wife curled up in bed and crying. It's amazing the way he just rolls with it and adjusts his plans to fit how I'm feeling, without a protest or complaint. My kids are great too - They understand when I just can't do something, even if I had told them I would . It breaks my heart a little when Benjamin says "Mom, do you want to play a game with me, or are you too tired? If you can't, that's ok." But it also makes me feel really good about the compassion he is developing. I'm so blessed to have a life (family, friends, job, other commitments) that can really accommodate my need for flexibility. I feel a lot of compassion for others struggling with chronic illness that don't have this luxury.

There's also a lot of uncertainty about my future. I was thinking about this yesterday: Five years from now, I might look back on this period of time and think "Wow, I could do so much back in 2014! I can't believe that I complained about my pain then. Things are a lot harder now." Or I could be doing a lot better then, and I might look back on this time as the hardest point in my illness, the rough time I had to get through before I started feeling better. Or perhaps things will be much the same in five years. I really have no idea. Maybe I'll be unable to walk next summer, or maybe I'll be in total remission and everything will be fine. Maybe I'll find some treatment that will make a huge difference for me, or maybe even the things that are helping now will stop working over time. My mind wants to settle on one or the other, to be able to predict what's coming and plan accordingly, but I just can't do that.

And maybe that's not such a bad thing. Really, even when we think we have it all figured out, there's a lot of uncertainty in any human life. We can't predict everything that will come our way, and for all of us, I think learning to accept that and just roll with the punches is a good thing. Even more so, as a follower of Jesus, I try to remember that my life is not just about my plans, but about God's plans for me. And God is always full of surprises. Who knows what He has in mind for me next? (Not me, that's for sure.)

So perhaps learning to live with uncertainty is a good thing, especially for a personality like mine. When I have a good day, with less pain or more energy, it feels like such a gift. 

On Easter, I felt great. I have no idea why, because I was in a lot of pain at the Easter Vigil the night before, even with a good dose of pain killers running through my system (why, oh why, are church pews sooo uncomfortable?). We got home late, and I didn't sleep well. But somehow, I felt really good on Easter Sunday. I'm sure Resurrection joy and the beautiful weather had a lot to do with it, but I even wore cute white sandals with my Easter dress (the first time wearing shoes without my orthotics in about six months!), and it didn't even bother my feet that much. We had a really wonderful day with good friends, our church community, and my parents, and I barely noticed my body for much of the day. After my parents left, I even had enough energy to go to the park with my family and enjoy the rest of the sunshine. It was such a wonderful day - my best day in a long time - and I went to bed so happy and grateful. On Monday, I felt awful again - my feet hurt and my whole body ached and I really just wanted to spend the whole day in bed. But I think I'm making progress on dealing with this uncertainty, because I didn't feel surprised or upset Monday morning - I just felt really grateful for the wonderful day on Easter.

So, yes, my life is more uncertain now and sometimes that drives me crazy, but I think I'm a better person because of this uncertainty. And maybe I'm learning a little about what it really means to trust God.

Thank you all for your love and friendship! I appreciate you.

Love,
Sara

Trust in the LORD with all your heart; lean not on your own understanding. - Proverbs 3:5

Why I Haven't Posted In A While

When I first started writing emails to update folks about my health, I resolved never to write an update when I was depressed or frustrated or scared or in a lot of pain. I thought this was important for two reasons:

First, I am severely tempted to complain all the time, about everything, and I don't want to use this communication as a way to whine. (Side note: This is not a new illness-related development. I've always had a strong temptation towards complaining, even when I had no real problems to complain about. One of my most transformative Lents ever was the year I gave up all complaining - to other people and even to myself. It really did change my life. I certainly still struggle with this, but that practice really opened my eyes to how damaging this habit could be - to myself and to the people around me.) Sharing my struggles openly with people who love me is good for my soul; complaining is not. Sometimes it's tricky to figure out the difference, but I definitely don't want this blog to just be an outlet for my complaints.

Also, I'm a very emotional person. I always have been this way (thanks Durako genes!), and I'm definitely struggling to keep a handle on negative emotions these days. When I'm feeling really upset, I'm not terribly rational and I have a tendency to exaggerate all of my problems in my own head. (The pain management book I read called this kind of thinking "catastrophizing," which sounds about right.) I'm learning that these negative emotions are real, and I may not be able to turn them off completely, but I can also choose to let these emotions come and go and try not to feed them or dwell in them any longer than I need to. (Can you tell I was reading a Buddhist book recently?) Anyway, what I think and say in highly emotional moments is definitely not something I want to be writing, sharing, and remembering for the future.

So, because of these two particular struggles of mine, I decided a long time ago to always wait until I was in a good place emotionally before I would write and share anything. (I have slipped up on this from time to time, and I still feel a bit of regret when I look at those posts. But I'm just learning and moving on. I trust that you all still love me anyway and don't think I'm too much of a melodramatic whiner.)

That said, I haven't posted for over a month... So, what does that tell you? :)

To be honest, it's been another rough span of time, both physically and emotionally, but I feel like I'm coming out of it a bit now. Lent was hard and heavy in a lot of ways, but Easter is sooo good for my soul. Physically, things are not much different and I have some more medical decision-making to do sometime soon, but I'm working on pulling out of sadness and self-absorption and returning to gratitude and generosity and joy. Thank you to all the kind friends that have reached out to me and offered love and support. My life is so much better because of you!

Anyway, I want to write a few more posts soon, but I just wanted to let you all know that I'm still here, and I'll share some more updates and thoughts in the next week or two.

Happy It's-Still-Easter everyone! Alleluia!

~ Sara

Do not lose your inner peace for anything whatsoever, even if your whole world seems upset. If you find that you have wandered away from the shelter of God, lead your heart back to Him quietly and simply. - St. Francis de Sales