[Description: close up of a gray colored winter coat wearing a lilac colored button with the words "pain day" in red letters.]
...like I was saying...
It's taken three days to write this rant. Started off as an IG post, then an email, then blog, back to IG and now here we are.
I am in deep fibroflareland and this season does not lend itself to a visit that is full of long baths, massage/body work, and reflection on the meaning of pain. This is a dense forest voyage through all manifestations of pain that my body can create: constant dull aches; sharp, breath-stopping stabs; radiating beacons of burning that swim over the fascia of my entire body, unpredictably and with variegated intensity. Bone spurs akin to a rubber-mallet-drill-bit burrowing hollows into my skeletal structure.
To all the dear friends who have helped me pack and move and unpack and generally held me throughout the last transitions, hi! and thank you again. I just wanted to let you know me and the cats are getting acquainted with our new home slowly but surely.
Unfortunately though I'm experiencing seriously heightened fibro symptoms and as a result can't do much nesting, settling, getting any work done and am hella struggling and kind of sad, stressed.
I've run out of things to ask for help, feel amazingly abandoned by my doctors who spend my appointments lecturing me about why the pain treatment I ask about is not matched to what I actually need. Every day has been a struggle this year and it is really bringing me under.
You [doctors] know and concede that my condition is chronic, lifelong, and changeable. You encourage me to remain active, not to get too down about life. You consistently refuse to provide me medication to treat the acute, and frankly horrifying, episodes of pain I experience that increase dramatically during the winter months. You chastise me, saying that I’ve done so well with my pain without meds up to this point and I don't want to go down the pain meds route… addiction etc, withdrawal and so on.
So instead you prescribe me daily, long term open ended drugs that affect my neuropathy and stay in my system, causing a whole host of side effects. These drugs do next to nothing to help on days when every function of my bod is excruciating. You want me to remain active, be social, congratulate me on maintaining work commitments but offer no aid so that I might continue said commitments without compromising my health and comfort.
I'm being reminded of loneliness and the isolation of being in this particular life/body/city...I'm reminded of my two failed care collectives, how they dissolved without much warning when my circumstances changed. How as a result it has gotten harder to ask for the amount of help I actually need sometimes. Interdependence can be a wavering thing. Like poly it can be beautiful and life giving when it's working - potentially heart wrenching and dwelling in the pits of misery when it isn't.
I wear this button because every single day is a pain day for me. Every single day. Sometimes I hope this button will help communicate to those around me why I move the way I do, take the time and space I do, am the way I am.
So that maybe when the bus driver doesn't lower the platform on my way in, maybe they'll lower it on my way out after seeing how hard it was. Or maybe when I drop my cane in the subway station and stand looking down at it and around at the people passing by and ignoring me - maybe someone will see my button and help me. These dreams have not yet come true.
I am lucky enough, blessed enough to have some very solid chosen family in my life. Folks that have listened while I wept on the kitchen floor, sat through moody tirades, given my mutual crip hustler pep talks…all this week alone! Waves of gratitude for the love I have in my life that gives balm to the wounds inflicted upon me by illness and systems.
Tired and wanting to put this piece and myself to bed, I’ll end with this quote from my musical mentor’s newest album: 'love will keep us safe from death'* . <3
*Björk “notget”. Vulnicura (2015)