When Your Get-Up-and-Go Gets Up and Leaves

In my life before the autoimmune disease, I was balls-to-the-walls, so to speak, all the time. I pushed myself hard to get things done. I didn’t know, as I do now, that who I am is more important than what I do. But that’s a story for a different day. The first thing I noticed, besides pervasive pain, was that I had no stamina. None. I was exhausted all the time. It didn’t matter how much I slept; I was always tired. I found a few long-term strategies to reduce my exhaustion, but while I was figuring out my treatment and how to cope with the disease, I had to make it through the day.

I learned to pace myself. It meant being realistic and

understanding that the game had changed. I had to limit how much I did at once, and expect myself to go slower. If it was very physical – and the definition for that changed to mean mere walking or bending, — I had to do a little, rest, maybe do a little more, and then rest. And often, that was it. I had to change the way I planned everything. And I learned the hard way that if I thought like the old me, things could get rough. Once, I had to call my family to rescue me at the grocery store. I had a cart full of groceries, but I was too exhausted and in too much pain to make it through the check-out and to the car. I needed to be realistic and plan. My joints couldn’t take much activity without getting more inflamed, and so walking or standing was difficult. The longer I was out, the slower I got.

I had to learn that I just hadn’t had a bad day. Rather than tell myself the next time would be better, I had to acknowledge that this was my current life. It sucked, but denying the truth set me up to fail. I could walk somewhere, but getting back might be hard. If you walk to the back of the store, you need to be able to get back to the front and then to the car. Now that I’m well, that seems like a no-brainer, but it was difficult at the time because I was so unsure of my limits and my body. I never knew when I’d get a blinding headache – which wasn’t quite every day – or my knees would get so bad I couldn’t walk.

I was a working mom with small children; I had things to do. I just had to live life in small portions. Luckily, I liked internet shopping and I had to learn to delegate. It was many years before I returned to the mall – it involved too much walking. I had to learn patience and how to ask for help, so the few good hours I had a day counted for the most important things.