I suffer from fibromyalgia, for which I have receiving treatment for about a year. Despite multiple tests and many medical interventions, for now, my fibromyalgia is not well-managed. Perversely, it seems in some ways to get worse whenever something new is attempted to treat it. This weekend, I suffered a horrible flare–one of the worst I have had, and all of the mental preparations made ahead–the attitudes I intended to take, the help I planned to ask for–all of it was wholly inadequate to weather the barrage of severe pain and incapacitation. Although my usual penchant is for humor writing, I also write my way through this illness. Sometimes what you see here is nothing more than sensations lobbed like globs of paint at a blank canvas. I write to keep me sane, but I hope it might help someone else stay sane, too.
Saturday night finds me plunged into the solitude of complete exhaustion, senses only just submerged, my own voice an unfamiliar reverberation rippling around me. I can hear all of you, amiably chattering around me, but you are faint and garbled. The need to reply seems distant. I am aware only enough to be bored, but not enough to meaningfully engage my mind. I lie submerged, aware distantly of embarrassment, regret and great sadness. For a time, it seems right to simply remain here, under the weight of the water and be still.
Finally, though, regret becomes too large.
Pulling myself up to break the surface, pain crashes on me. Spikes hammered and thorns wound and bands pulled tight around me. Nausea. I can hear you clearly now, but the pain makes me angry with you, driving sharpness into my nervous system with each unheeded request to get ready for bed. The cold on my wet skin raises goosebumps, my teeth chatter. I find myself yelling.
I rose, with great effort to give love, and gave you only concern and bitterness.
So I sink back down, and now the embarrassment is greater. Pain has chased me underwater, with its torturing vines of thorn that wind round me as I shift. It is profoundly lonely to be in pain. Lonely for the love I can't give properly and the words I cannot find to say.
I must remember that I am not a village flooded and laid waste but a shoreline, awaiting what I am made to attend. I have only to experience, give voice to, and remember that the change will come.
Weeks now, they ebb and flow, and bring with them the gladness of a day when I can go walking or a series of days, like precious beads on a string, that feel purposeful. Joy and gratitude. Love and acceptance. These things come. They are there now, starfish under the heaving, dark wave, merely clinging to a rock, to be found later when the tide is out. The tide always goes out. And I will be full to bursting with love again, for the gifts it leaves me in the shallows.
For now, for today, I am submerged again, my world distorted by the wave I could not escape. So I wait, remembering the gladness I will feel at the onset of its ebb.