News is coming at the ME community at a crazy pace right now. Each time I go online, there is another controversial article that requires a response. First there was the NPR chronic pain piece and ensuing debacle. Then came the infamous Reuters article, and this week we’ve seen media coverage in the UK that is shockingly bad. On the happier side of the spectrum, we have the Emerge Australia Conference and the upcoming NIH meeting on accelerating ME/CFS research.
And it’s only Tuesday.
After the NPR story, I started mentally drafting an article about misogyny, ableism, and NPR’s shocking ignorance of the landscape into which they dropped that stink bomb. The Reuters article deserves to be demolished with a factual wrecking ball. I haven’t had the capacity to give the UK stories and critical responses more than a glance.
Meanwhile, I’ve been working on my analysis of NIH’s grant review panels and application approvals. As I collate the data from multiple FOIA requests, I am finding inconsistencies. NIH gave me data that differs from the data they gave another advocate. There are even inconsistencies among the responses NIH has given me. For example, in one response NIH told me no meeting was held on a particular date. But in another response, NIH told me how many grant applications were reviewed at a meeting corresponding with that date. Catching these errors takes a lot of time, and careful cross-checking instead of accepting NIH responses at face value. And when I find errors like this, I have to file additional FOIA requests to get clarification.
Amidst all of this, I am writing a book.
It’s all too much. I do not have the capacity to write thousands of words a day, or push forward multiple projects. My ME brain cannot multi-task or focus on more than one thing. Small interruptions, like a short phone call or text from a friend, derail my concentration and short circuit what I’m trying to do.
I am constantly asking myself, “What’s the most important thing I need to do?” Trade-offs are familiar to everyone with ME. Take a shower or answer an email? Pay a bill or cook some food? Read to your kid or do some stretches? Read a news article or research a treatment? You can only pick one thing at a time, and hope there will be capacity left for something after that.
Self-care is a necessity, not a luxury, for people with ME. The more I pay attention to my choices, the more I realize that I suck at self-care. Since I first got sick, I have consistently chosen to sacrifice what my body needs in favor of what my family needs, what advocacy needs. It’s a vicious cycle that leaves me wondering if these choices have made me sicker. How well might I be if I had put my own body first?
I am trying to do better. Now I ask myself, “If I can only write one thing, what is the highest priority?” I have chosen to write words for the book, rather than write words about all the controversies this week. I will watch the NIH meeting from home to save the energy of attending in person. I am asking the people I love for help and understanding.
We all have limits, regardless of health or circumstances. Everyone, at some point, has to choose to do one thing and sacrifice another. No one can have it all. People with ME, and other chronic diseases, have to make choices about activities others take for granted, but the principle is the same: what is next most important thing I need to do, and what other thing do I have to give up?
We need to rely on each other. I am learning to trust that even if I cannot participate in an advocacy issue, there are others who can. I am changing my focus from “What needs to be done?” to “What can I do?” It might sound like a distinction without a difference, but for me it is a tectonic shift.
So if you are struggling or overwhelmed, I see you. If you need to take a break from something, I support you. Do what you must to turn down the fire hose and drink from a water fountain instead. I’ll be standing right next to you.