Photo of Rebecca and Marigold relaxing on the porch
Photograph taken from Rebecca’s vantage point on the couch on her front porch. Her feet are propped on a table, and iced coffee from Gimme! and a ceramic tumbler on the table. Marigold dog is standing further out, looking off the porch across the street. There are lush green ferns on the porch, and leafed out trees past the porch. A hanging basket of yellow and peach flowers hangs in the upper left corner.

Here’s the thing about having a really disabling chronic illness. It’s unpredictable. And very difficult to plan for the future. While I have several conditions, the one with the most dramatic impact on my life is ME/CFS. I could improve. I could worsen. There’s no way to predict. It’s not well-understood as a disease process, but there is fast-paced emerging research. Which means there could be treatment in a few years. But there’s no way to know.

For most of us, the unknown is pretty uncomfortable. I had a long-standing habit of thinking I could control things. (Ha!) But one of the things I came to understand (in part through my dear friend and amazing life coach Jaya), is that denial of reality is not helpful for me. And that’s what’s often going on for me when I’m in a cycle of attempts to control and frustrations of it not working. It’s what I now personally call “beating my head against reality.”

Luckily, I have a meditation practice, and that has helped bring me to a place of a decent amount of acceptance of my current physical reality. Once I’m willing to see my current reality and accept that it is true, quality of life can become a priority. Not trying to get better (that would of course be awesome). Not waiting to see what might happen down the road (although I track my symptoms carefully and monitor research advances regularly). But how can things be the best they can be, now.

Quality of life may mean different things to each of us. Some things it has meant for me: Symptom relief. Finding a good aide. Asking for help. Investing in a new tablet so I can read free books from the library without having to exchange physical objects in a place. Asking friends to rearrange my furniture so that it works better now that I spend 95% of my time in bed. Learning to rest more often. Staying connected with friends and loved ones.

The needs and answers keep evolving, and I’m finding it works well to approach much of it as an evolving experiment.

I became bed-tethered about nine months ago. At the time, my home did not change. It’s just that now I was in the same room all the time. But over time I started noticing, hey I’m in bed everyday. I haven’t been out to the couch in several weeks. And realized that the laptop I was using to watch TV was becoming sort of inconvenient. And I had a spare monitor lying around. So it came into my room and I brought the Fire TV stick in from the living room. And now I could watch shows without dealing with balancing and positioning and overheating concerns. And then I realized I’d been in my room for many months. Why am I keeping the TV with the better picture and the volume remote in the living room when I never go in there? So the TV came into my room and the monitor went out.

Something similar has been happening with my nightstand. I realized slowly that the more that I could keep next to me, the less time I could spend standing up (which is actually bad for me). But there isn’t a lot of space next to my bed. About 14 inches. But oh, I have this rack in the basement. And if someone brought that up, I could add it on top and have three bins. Oh, if I re-purpose my mom’s old letter holder I could have a place to keep my tablet and my planner and the remotes and some pens. Oh, I’m doing something really awkward to manage my laptops and keep them in reach. Let’s try something differently awkward that might solve other needs that I’m noticing.

I’ve got a couple of new and big experiments in the lab right now, and I’m looking forward to sharing how they’re going once there’s some more data. Have you run any interesting experiments, or found ways to improve your quality of life?


Quality of Life
Tagged on:                 

Leave a Reply

Your email address will not be published. Required fields are marked *