Days after Infusion

I’m part of a Facebook group where people talk about their experiences with Ocrevus. Many report feeling terrible after infusions, fatigued and generally unwell. I’m fortunate that my negative effects have been minimal, but after bouncing back from the first two half doses in August, my first full dose last week was a little different.

On Monday, I went to my parents’ house after work for dinner. My dad asked how I feel in the days after treatment, what it’s like for me, and I paused. How do I explain it?

The day of the infusion, Friday, I was tired from Benadryl but hopped up on steroids. Tired won out by the time I got home, and I was able to take a short nap. My face was red and hot from the steroids and my lower back ached terribly, but I had nothing to do but relax all night, so I felt fine overall and focused on drinking lots of water and tea. The next day, I mostly took it easy but did get out for a walk. It felt great to be outside, and I walked along the river, my happy place, sitting for a while to enjoy the cold air and watch the Canadian geese, admiring how they know not to swim out too far from the bank’s edge, avoiding the swift currents that would carry them downstream. My legs were noticeably heavy and quite numb by the time I reached my car, something I haven’t experienced for a couple of months. I walked on Sunday, too, this time in the community center because of bad weather, and I was so tired at the end of it that I had to take a nap when I got home despite having slept in that morning. I felt blue all day, edgy and slightly depressed, something I have come to expect after steroidal treatment.

On Monday, I had to get back to work. I prioritized getting my exercise in first and was up early to make my way to the community center to get it done. Then I went to work, and by the end of teaching class, I was completely zapped. I’m sure my father saw it on my haggard face when I arrived at their house and he asked how I was feeling. Visiting with my mom and dad is always restorative, but dinner with them on Monday was especially so. I left feeling better, even if it was only to go home and collapse on the couch before going to bed earlier than usual.

Yesterday, I felt more like myself. I started the day at the community center to get a walk in, discouraged when my legs were numb again at the end. I rallied, though, and was able to teach my class and get caught up on grading. Expecting a big snowstorm for today, I doubted I’d be able to get a walk in, so Alvaro and I took Maggie to the lake for a second walk in the afternoon to get ahead of it. We were halfway around when I realized I had overdone it. My legs were dragging, protesting, and I finished on fumes. Of course, I should have known better. I did know better. But I want so badly to keep doing everything my way and in my time.

I keep saying that MS has taught me a lot about patience, but has it really? Resting feels like giving in. Skipping exercise feels like giving up. Patience feels like a flimsy excuse for weakness.

All of the schools in the area closed today because of the snow. My college, in an incredibly rare move, canceled classes for today last night. As a result, I’ve had the best morning, focusing on small pleasures: drinking strong coffee, reading the newspaper, chatting with my husband, playing with my dog. Besides making dinner later, I have nothing that absolutely needs to be done. And even though I did that second walk yesterday, I feel the pull nagging at me. The snow wasn’t as bad as expected. The streets are clear. An elderly person literally just walked by your house.

The community center is closed because of the snow, leaving an indoor walk out of the question. Alvaro is headed out soon, so I’ve asked him to scout for me, looking for a nearby walking trail that has been cleared so I can get out this afternoon, hopeful that today is the day my legs are going to feel normal again.

There’s only one way to find out, stubborn though it may be.

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