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.
Oh Tara, "It is profoundly lonely to be in pain." is sad and yet true as I sit outside your pain unable to help. Let me know if there is anything I can do. You were my Star Thrower just last week. The fact that you can touch so many lives when you feel so terrible is amazing. Please let me know what I can do -- even if it is just dinner (with your recipe if that helps) or shopping, or having the boys over after school...
ReplyDeletemoving post, Tara. Some lovely imagery. This is a keeper; sometimes our best writing emerges out of our worst moments.
ReplyDeleteTara, your imagery of the shoreline and tide coming in and out is simply beautiful. I feel for you and the pain you are enduring with this dreadful fibromyalgia. Hope you feel some comfort and peace now.
ReplyDeleteAlthough my fibromyalgia is well-managed, I still have my moments, if you will. I understand completely, and hope that you start to see some improvement soon.
ReplyDeleteBeautifully written as always. I hope the tide sweeps out and leaves you lots of exciting creepy crawlies and sea glass soon.
ReplyDeleteTara, my heart goes out to you. As someone who has suffered with chronic pain for over 30 years, I know how it is to hurt so bad you can't function. To be able to chronicle your pain so beautifully during a difficult time speaks volumes to your strength. Hang in there.
ReplyDeleteMy knowing sympathies. I've realized that some of the new/additional pain I've had that has been different from my usual chronic fatigue stuff also resembles symptoms of fibromyalgia. It is such a literal and figurative pain in the ass.
ReplyDeleteI'm sorry to hear that, Sara. What you produce seems incredible to me. I often wonder if I have both CFS and fibro, too, or if that is possible. I would love to talk with you over email. I am very curious how you do what you do, balance your work and life. I need a lot of non-advicey sort of shared experience in this area now.
DeleteI don't know if it's particularly well-balanced at times, but I guess I try. If you want to email me, it's just sarahabein at gmail. :) And thank you.
DeleteI so dearly appreciate all the love and empathy. Even more than that, I appreciate knowing people like my writing. :) I DO feel better now. The tide is out again, and today is a better day. I have some actions to take–doctor's appointment tomorrow and decisions about my work life next year and possibly cutting back hours, so I feel like I am doing something.
ReplyDeleteIt means more than I can say to feel heard.
This is very moving, and educational about how fibro manifests itself. I'm sending you hugs and love.
ReplyDelete"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."
ReplyDeleteAnyone with chronic pain will understand this. It resonates so very deeply.
You are not alone in wondering that as well about the connection of FMS and CFS. They are sometimes the waves of that tide you write about. What is the hardest part...the pain? the fatigue? or the inability to escape the hopefully only periodic mental fog?
ReplyDeletehttp://www.beatcfsandfms.org/
I am trying to surpass the mental fog as much as possible and get to the source. The above is one article when searching for FMS CFS ATP and ADP. I hope you find it confirming your intuition, and give you some hope.
I want to know how EXACTLY. SIMPLY am I to feed my mitochondria!
One article I read actually explained why some of the things we are told to avoid are actually doing things at a cellular level to assist in the recycling of our cells energy producing recycling abilities.