In speaking with my Dominant this week, Spoon Theory came up. Briefly, the idea is that everyone has spoons–healthy people have an unlimited number of spoons and never/rarely have to think about how many spoons/how much energy they have in a given day to do things; chronically ill/mentally ill people have a more limited supply of spoons (and the number can vary slightly, depending on ‘good’ and ‘bad’ days), and so we have to plan accordingly.
My Sir hadn’t heard of Spoon Theory. After reading the article, he came back and asked, “My sweet sub, is your life like this?!”
I tend not to talk overly much with my loved ones–or anyone–about what my experience with chronic illness is like. Partially, I don’t want to be seen as complaining; partially, I don’t want to be a pity case; partially, I want to figure things out on my own.
So, though I’d told him I have migraines and etc, I laid it out for him then: that I have not been able to get out of bed for most of the last year. That leaving my room, let alone my apartment, has been a huge undertaking–I need someone to stand in the bathroom with me when I’m showering in case I fall (my ankle and knee joints are bad), so I have to wait until wife or Zyn are available and plan accordingly, as well as plan around dishes and laundry doing. And I can’t do the laundry with the arthritis in my neck, or put dishes away from the dishwasher, and so often I can’t do either the dishes or the laundry during the day while they’re at work to get them out of the way. And then the actual actions of showering are difficult as well–I usually skip shaving unless there’s a special event. My partners love me as I am, and I’m fortunate to have them.
And I told him that I’d had, until recently, a migraine pretty much every day–and that even now, the preventative does not prevent a migraine due to arthritis, just due to barometric pressure and other triggers. The blood pressure medication is helping, too, but it’s also tiring me out because of when I take it–I have an appointment soon to talk about changing that, but I have to wait, because the medication is tricky to change around.
And the migraine preventative hogs my body’s water supply. I’m a crier, always have been. I’m one of those people who tears up at long distance commercials and sappy movies I’ve seen a dozen times. But now, my tears are thick and difficult. Crying makes my face hurt. I drink lots of extra water, and it helps some–but there’s only so much water a person can drink in a day.
My energy is still low. I’m still trying to reclaim it. Emotional stress takes a huge toll on me and makes me physically hurt. Every stressor adds up. It amazes me to think there are people…that most people don’t hurt every day. To me, hurting is so normal that I feel like I should just be powering through it, even though I often can’t. And of course, that’s a toxic thought pattern that adds a layer of stress that erodes at my spoons.
I don’t ‘look’ sick. I look fat and lazy. I know that. I’m not a lazy person, though I am fat. It’s hard not to be fat with my combination of genetics and illness. It’s harder to get people to understand that if I’m sitting up, or even if I’m walking, I’m not necessarily ‘okay.’ I may just be pushing myself to get the thing done that needs done, because it has to be done.
Often times, I’m found sitting in my computer chair, reading. I have a very active brain, and I read a lot. This has confused some people–even my partners–into thinking that I must be just fine if my brain is processing information. But for me, this is a marker of recovery. Most of the time I spend in bed has been spent with My Little Pony: Friendship Is Magic–because it’s so non-threatening, so friendly, so pastel. Even that has been–as I explained to my Sir–analyzed by my foggy brain. I’m an academic at heart, and I need to engage my brain to feel alive. Reading alone, solitary, in quiet, can help recharge me and get me ready to deal with other things in my life and in my love ones’ lives.
Spoons work a little differently for all of us, I think–but this is what it’s like for me. The more pain I’m in, the fewer spoons I have. And though I’m slowly getting better with my new medications, I’m not fully ‘recovered’ yet–and may never be. I am probably always going to be counting my spoons, and being glad when my loved ones understand that I must allot myself carefully.