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.
You’ve gotten into my arms a lot so far this week. I was trying to do some light work in my garden & you set off the alarms! From shoulders to fingertips, you were a blaring, raging siren screaming at me to stop. I felt the energy drain from my whole body & my arms began to tremble in resistance to this force of pain pushing from within. I don’t know how to process moments like this–there’s no tidy category in which to file this combination of ache, weakness, and powerlessness. May I please use my arms without quite so much ruckus for the foreseeable future?
As I anticipated in my last post, you took your chance today to take me down for the count. I woke up this morning feeling exhausted, ate some breakfast, mowed the lawn and then . . . napped for almost the whole day. I didn’t intend to sleep for so long, but you had me pressed heavily into the bed, each cell of my body feeling drained, nerves groggily firing with pain and discomfort. I slept, then stirred, then slept again.
Tonight, I feel that surreal buzz that comes with evening hours that feel like daytime. I called my Mom, then went back out to do a bit more yard work, made some dinner (delicious yellow summer squash sauteed with onion and garlic, fresh blueberries, sharp cheddar), and put away some laundry. There is more that I should do to catch up on some housework tonight . . . but before I do, I wanted to take a few minutes to write to you . . .
Are you glad that I pushed you the past couple of days? Glad we saw the comedy show and MacBeth and caught up with some friends? It’s nice that getting out of the house a bit more helped me to feel a little bit more human . . . but I guess I’m wondering if my attitude of pushing you isn’t correct. I tend to sometimes see things as too much all or nothing. Sometimes I feel like I either need to act like you’re not with me at all or just allow you to fully take over, but maybe there’s a better balance.
I know I look at this as me against you a lot of the time, but tonight I’m wondering if I need to stop looking at the long (and potentially frustrating) sleep today as you ‘getting me back’ or as revenge for the week’s activities but just as a natural piece of the reality of your needs. This is not easy for me to understand or accept, but maybe I can.
This blog and these letters are about me learning to live with you.
Maybe I can.
Tonight, we gardened. It was a nice night — slightly humid as though rain was gathering up in the clouds. We were surrounded by the echo of children’s voices playing in a neighbor’s yard. I dug holes in the dirt, and you protested when I bent over to lift large clumps of the earth into my garden-gloved hands.
I moved some flowers that seemed to not be in the happiest place they could be, and I planted some new ones–two shocking fuchsia dahlias that will add a splash to the mix I’m mixing. It seems like every week I find a new plant to add — last week it was two beautiful lilies that remind me of my great-Grandmothers. Every time I see them now, I am reminded of my roots that go deep into the earth of Pennsylvania via Germany and Maine via Quebec and France and . . . beyond.
Oh, Fibro–I’m surprised by how easily I push you to the side when I’m in the garden, even if you’re nagging at me, causing me pain or just discouraging me from trying, from leaning in and breathing deeply. There’s something about that place, of breathing in the sharp smells of late spring earth, that transcends your boundaries for a while. I may have aches and pains tomorrow from the work, but they will be worth it. I am thankful for this patch of ground that I call home and thankful for the time, treasure and ability to cultivate and care for it.
This is our home, Fibro. We are living here together. That is why I want to make it the best that it can be. Maybe you’d be willing to lend a hand?