You certainly made sure that we spent the weekend together. I was completely exhausted and in pain all through Friday evening, Saturday and Sunday, missing a Birthday Party Saturday night because I didn’t have enough energy to go. I could imagine how you would protest against the loud noises and commotion of the venue. In retrospect, I’m wishing I would have pushed myself a little bit more to at least make use of the time at home — more reading or sketching or something . . . Will you help me to remember this if it happens again?
Tomorrow is the first day of Autumn, and I can already feel your slight protests against the chill that’s creeping into the air.
That is why I’m writing you this note in advance–to ask if you would please cooperate with me as we transition over the next few weeks? The daylight hours are already shorter, which can be difficult for my mood and energy levels, so it would be extremely helpful if you would refrain from flaring.
I love Autumn — the crisp air, pumpkins, apples, hay rides, warm cider, time with friends and family. I’ve already planned some getaways and seasonal fun. Let’s enjoy together with no shenanigans from you.
Living with you is a process of stretching — stretching my body as well as my mind and emotions. It is a stretching of the expectations about what my life will look like. Each morning and evening, I spend time stretching my body. Every moment, I am stretched.
Sliding out of bed, slowly, feeling like a young woman in an old woman’s body, I put on my “stretching songs” playlist and lift my arms to the sky. I sway and bend in a variety of positions designed to help my body remember how it should function. My body never feels “right” or “loose,” and usually the stretching doesn’t help much because most of my pain is unrelated.
I’m still able to do a lot physically, even if it is painful, and I know a lot of people with a Fibro diagnosis can no longer do much — I still work full time and get my lawn mowed (usually) and keep up with my garden (for the most part), but I am being challenged to accept a picture of life that doesn’t feel comfortable. It feels limited. The number of sighs I can sigh seems unlimited. The number of gasps of pain.
Fibro, I’m wondering if you will ever help me to see what all of this is achieving. Is it something? Will there be a poetic ribbon tied onto the end of this story of simple, daily, sometimes-seemingly-useless rituals? I stretch, but I still don’t know.
Today, I feel like you are hovering all around me, like you’ve fashioned yourself into a suit of scouring pads, hugging me tightly at every turn. I can’t remove you while you scrub into me. Abrasive to my peace of mind. Bruising me with invisible bruises.
I feel the weight of you with each move I try to make. Whether I sit, stand or lie down, each position brings its own individual challenges — stabs, jabs, or prickles of pain. Shooting pain or radiating pain. A never-ending menu of surprises.
I stare at you in the mirror sometimes, and it’s like staring at myself but more elusive.
This week, I noticed that I have worn a hole in my sheet with restless legs in pain at night.
I have no questions for you now — just making these observations so that I can remember these days.