(Or; how to allocate your energy as a person with fibromyalgia.)
This is a guide for people like me, because I know that there are a lot of people like me. It’s not a how-to, but it’s full of things that I wish I knew when I got sick. When you become chronically ill, your entire life becomes about resource allocation. Like everyone else, you only have so much energy to go around, but unlike everyone else, that’s often a matter of minutes each day.
Your whole life shifts. Problems like “do I have time to see my parents, go out on Friday, and go to yoga this week,” become “do I have the energy to make dinner and also eat it.” Your day becomes compressed into tiny little capsules of being able to do things (see friends! Have sex! Buy groceries!) interspersed with hours upon hours of lying in bed, listening to podcasts.
But amongst all of that, there was one lesson that I wish I had had someone tell me the day that I was diagnosed with fibro: it’s okay to make things easier when you can.
Learning from my father: Buy whatever makes your (chronically ill) life easier
My dad and I have a lot in common. We’re both pretty brainy people with fibromyalgia who run businesses that began as passion projects. We both really love my mom and sister. We both grew up with frequent sleep paralysis and night terrors – which, as a teen, helped me realize that my dad was always, always, a l w a y s going to be there for me.
My father has always instilled in me that there is no shame in buying things that are going to make your life easier. That means things like: a super-smooth new razor from Dollar Shave Club (at half the cost of a pink razor from the drugstore, and half the need for shaving daily), ten-second-foundation from Pür Minerals (this is my second pan), and the right lens for the job (this post was shot with the Sigma E-mount 60mm F2.8 DN.) You do not always have to be struggling to prove how sick you are.
(To cite that same article from Esmé Weijun Wang: one would hope.)
Tips from my mother: Allocate resources towards things that mean you can do more
My mom has taught me more than anyone else about resource management. We went to Europe together this spring, and she insisted on pushing me around in a wheelchair in every museum we went to. It was tough to get to a point where I felt like I could. Having a chronic illness is one thing, but showing people that you have a chronic illness is something else altogether.
If it’s going to mean you can see more things, she told me almost every day of our trip, then stop arguing with me and get in the chair. My mom has always been my biggest cheerleader when it comes to allocating resources in a way that’ll help me experience a “normal” life. And she’s always right. It’s worth it to make other people uncomfortable with my disability if it means I’m not going to be in as much pain.
Other things that I wish I had put in the “spend” category back when I originally developed chronic pain and fatigue: taking cabs to get to appointments, refusing meetings that aren’t going to be constructive, buying a really good mattress early on, and being “lazy” in long, hot baths with Yuzu Soap Bath Bomb Cubes to release tension through my thighs and glutes.
A generational focus: Make space for your own growth
My final category of things to “spend” (money, energy, intimacy, time) on are things that are just for me. It took me a long time to realize how important personal growth was – and I don’t mean picking a goal and sticking to it. I mean figuring out who you are, despite being chronically ill, and playing with whether or not that self-concept is something that’s still achievable for you.
This is the space for indulgence. I will spend on things that help ground me in a moment, when it’s hard to focus through the brainfog: Saje Spa Spirit and Serge Lutens Santal Majescule. I will spend on things that help ground me in my gender: Burberry Poppy Black and YSL Bronze Pyrite.
And perhaps most importantly of all, I will spend on things that help ground me in my body: things like like the Montelle Intimates Gatsby set, and anything else that makes me feel, for a moment, like this flesh belongs to me.
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Lashes: KISS Lash Couture “Little Black Dress” Lashes ($5.99 USD).
