I’m becoming increasingly aware of how much I’ve allowed you to make me feel like I can’t, like I’m limited, like I might as well give up and allow depression and pain to defeat me. I’m starting to see through the cracks a little more — to break up the ice of complacency and fight back. I’m a young woman, still have so much to do and see, and I need to stop pretending that it’s OK that sometimes I’m like an old woman hermit — my bedroom becomes like a little cave sometimes.
I’m making plans to do more fun things like buying tickets to a Broadway show, or working on getting friends together for an overnight beach trip. You might protest, and I don’t know if you’ll kick up with symptoms when I go to do these things, but I can’t keep saying “no” to the things I want to do just because I’m afraid of how I *might feel. From now on, I’m going to try to say “yes” more and then deal with you in the moment as I go along.
I do hope you’ll be reasonable and just allow these things to go smoothly, but even if you don’t, I’m doing it anyway. Take that.
I’ve been trying to push you aside long enough to be inspired . . . to sort through thoughts about the things I find interesting or engaging . . . to think about what I want my life to look like outside of your boundaries. I do find that there are moments when I get into a creative flow and time passes without my notice, when I am able to put you in a mode of suspended animation and pay less attention to your nagging nudges.
Tonight, I’ve been gathering images and reference to put together a mood board for a creative project I want to do, and I have found myself really enjoying the process. It is low-key and not strenuous, allowing my mind and emotions to dance in any direction they desire, but as I type this note, I do feel your prickly pricks running along my shoulders, back, hips, legs. I feel bruised all over. I feel very, very tired in a way that someone without you as a constant companion might not understand.
So, here’s a question — Do you think there’s a way that we can work together to re-channel the energy you spend hassling me? Any chance that we could get that to flow into more positive directions, to support and invigorate my creative process? Sometimes I feel so stuck when you are being your least cooperative . . . and I want to spend more time ‘unstuck.’
Think about it, ok?
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?
This is not fun. I know I did a little bit of yard work and ran a few errands yesterday, but that shouldn’t leave me so totally drained and pained. I’ve slept a lot but have so many pains that I wake frequently, uncomfortable. Headache. Random numbness. Aches so deep I wonder if they might at some point implode me.
I know I wrote earlier about trying to ignore you. I guess you’ve got my attention now . . .
Anything on your mind?