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this shit is hard
Jun. 9th, 2023 11:44 amSad, angry, hopeless, uncertain, fearful…I have a lot of feels around scleroderma’s ongoing assault on this body I live in. I, me, this flesh, brain, organs…breath. Sometimes the anger or fear are so sharp they wake me from sleep; sometimes I wake crying. Occasionally I wake grateful that the cats seem well and happy and I get to be here with them, enjoying my little loft home that I got the grace to make for us, that while my hands will never be fully healed, they are better than they were some months ago, and the same goes for my guts, now that the sleroderma has fully involved them. Then there’s my lungs, how tired and out of breath I get doing simple household chores…
So. I am doing therapy, the psychological kind, as well as now, finally, seeing a hand specialist for OT (I should have been seeing one years ago, but no rheumatologist ever suggested it). These are good things. But.
Oh gods, the wailing in my heart, the sorrow and hurt.
There is no normal…showering, dressing, preparing food, all are fraught and difficult.
And then there’s writing, the actual process of which has always been a refuge, an energy giver, a reservoir and joy for me. The career side less so. Though sharing the writing is a part of its life, the emergent point of its existence. A glimmer of good stuff on that side in the midst of the hard weeks post-hospital has now dimmed, and my focus in writing is challenged by the gabapentin cotton wool I have to be in to not tear the skin from my fingers.
Am I tired? I am so tired. And there is no cure, no course of treatment, no other side or end in sight but the end. There are better days, stretches of them, is the hope, there are loved ones, sweet friends and family…
But goddamn, it sucks, this sucks. I want to be happy, to have joy and light in me, to give and share good stuff. I want to be able to travel, but it seems so scary right now, in the uncertainty of how my guts will react to it. I do not want to end up in the hospital again.
So I do the chores I can, take care of my hands, eat carefully, watch the light move across the windows, do crosswords, make digital collages, build beautiful weird things in sims, write some, read, watch stuff, go for walks and get out of breath, meditate. It’s kind of a victory that I can get myself to movies now, and watching a film in a theater is an escape I relish.
I need a hug, a huge hug that holds me and supports me and makes me feel safe and loved and cared for. And I could really use some wins, some unfading glimmers of light in the writing career, some good stuff.
Trying to sit with the uncertainty, the fear and anxiety of it, meditate with it…makes me cry, is what it does. I am here, doing my best. But man, this shit is hard.
So. I am doing therapy, the psychological kind, as well as now, finally, seeing a hand specialist for OT (I should have been seeing one years ago, but no rheumatologist ever suggested it). These are good things. But.
Oh gods, the wailing in my heart, the sorrow and hurt.
There is no normal…showering, dressing, preparing food, all are fraught and difficult.
And then there’s writing, the actual process of which has always been a refuge, an energy giver, a reservoir and joy for me. The career side less so. Though sharing the writing is a part of its life, the emergent point of its existence. A glimmer of good stuff on that side in the midst of the hard weeks post-hospital has now dimmed, and my focus in writing is challenged by the gabapentin cotton wool I have to be in to not tear the skin from my fingers.
Am I tired? I am so tired. And there is no cure, no course of treatment, no other side or end in sight but the end. There are better days, stretches of them, is the hope, there are loved ones, sweet friends and family…
But goddamn, it sucks, this sucks. I want to be happy, to have joy and light in me, to give and share good stuff. I want to be able to travel, but it seems so scary right now, in the uncertainty of how my guts will react to it. I do not want to end up in the hospital again.
So I do the chores I can, take care of my hands, eat carefully, watch the light move across the windows, do crosswords, make digital collages, build beautiful weird things in sims, write some, read, watch stuff, go for walks and get out of breath, meditate. It’s kind of a victory that I can get myself to movies now, and watching a film in a theater is an escape I relish.
I need a hug, a huge hug that holds me and supports me and makes me feel safe and loved and cared for. And I could really use some wins, some unfading glimmers of light in the writing career, some good stuff.
Trying to sit with the uncertainty, the fear and anxiety of it, meditate with it…makes me cry, is what it does. I am here, doing my best. But man, this shit is hard.
