I use to be gregarious and outgoing. Now I struggle to leave my cave. This is how I cope.
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Little Girl Lost
Oh Daddy I miss you so much. I wish I could tell you all the things that have been going on lately, even though they aren’t momentous. Your quiet way of reassuring me made it easier to bear the heaviness of daily life in pain and illness. I am struggling with this restriction. Whenever I feel I am getting a handle on the limits of my body they change, whenever I feel I can manage the demands of…
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Acceptance...
It’s a bitch. I’m not very good at it. So here is my attempt number 817: Yesterday I was trimming a mat for a painting using an exacto knife. It took a while. Ever since my middle finger on my right hand has been numb. Is this a permanent thing? This forever numbness? If so, is that okay? How do I accept the limitations my body imposes without sliding into despair? How do I live life as a…
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Dead people are rude...
They never call, they never write, they never stop in to visit. This pithy comment you used to say to me was usually accompanied by a melancholy sigh as you remembered those you had lost. Now it is you who are the rude one Daddy dearest. It has been over a year since you had the temerity to die in my arms, unexpectedly and dramatically, making as big a splash in your death as you were wont to…
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Oh Father...
Oh Father It’s the waiting. the interminable waiting for you to return, to enter the room, to open a door, to call my nickname or ask me for something. it’s the feeling of a breath not fully taken not fully released, held eternally in expectation while time moves on without you. it’s the knowing that given a choice you would return you would call you would come back. you…
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Loss when you don't believe in Heaven...
I do not believe in Heaven. I believe this one life is the beautiful, shining opportunity we get to make the most of our time. So when my Dad died in my arms in late February some of the shock and soul-searing pain stemmed from my belief that he is gone. Gone, gone, gone. Never coming back gone. Also, that I will not see him again. There is no after-life wherein we get to hug it out and…
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Broken Hearts Resist Mending...
They say the first year of loss is the hardest. I wouldn’t know, I haven’t made it through the first year. All I can say for certain is that I am still struggling to breathe. It’s Father’s Day on Sunday and for the first time in my life I will not be writing a poem or baking a cake or choosing a new shirt for the man who gave me everything. Instead I will be trying to breathe. Trying to force…
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Life is currently a dumpster fire...
Life is currently a dumpster fire…
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#cancer#chronicillness#chronicpain#fibro#Fibromyalgia#goblinmode#SNF#spoonie#spoonielife#spoonies#spooniewarrior#support
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Grinched...
Grinched…
I’m not exactly vowing to get vengeance against everyone celebrating their happy holiday butts off but despite the myriad of shiny lights I’ve put up and the carefully thought out gifts I’ve purchased I kind of just want to crawl into bed and stay there until New Year’s. Some of that is because it’s cold and wintery and my body gets extra hurty when it’s cold and wintery. Some of that is because…
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Everywhere I turn, fire.
Everywhere I turn, fire.
Feeling a bit overwhelmed… It just feels as though every day I am surrounded by red hot pokers. People I love are struggling. Thinking about the reasons for the their struggles makes me scramble back to distraction or anything else because otherwise I want to cry because someone is sick or because their choices are making them sick or because their mental health is really bad and there isn’t…
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Not a dumpster fire...
Not a dumpster fire…
but very nearly a lamp fire. Art is not always the seamless and graceful creation of something beautiful out of randoms other things. Often it is the messy and curse-laden creation of crap out of other crap. Today I was attempting to make another lamp as a gift for my son for Christmas. My idea was to make an octopus with XBOX consoles for tentacles and LED light strips running in and around…
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Goblin Mode - not just OED's word of the year.
Goblin Mode – not just OED’s word of the year.
It’s the holiday season and I want to crawl into a cave and hide from everyone I know. It’s not you, it’s me. I’m serious. You’ve done nothing wrong. It really is me. My inner goblin has been greedily grasping at everyone solitary moment I’ve been able to muster for the past month. Her hunger is becoming insatiable. She wants to wander around a vacant room in no bra, loose workout clothes that…
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WHY IS THE AIR SHARP?
WHY IS THE AIR SHARP?
HOLY MOTHER OF HELL! WTF!? There I was, managing my life with small nerve fiber neuropathy when BLAMMO suddenly one evening my hands and fingers felt like I was playing with slivers of broken glass anytime I touched anything. This was not some gradual slide over time either. I work with my hands all the time. I use yarn, paper, glue, fabric, rocks, paints, cardboard, you name it. Usually I am…
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I got...distracted.
I got…distracted.
I had intended to return to writing here regularly but then I got distracted by art, and family, health, and pets, the state of the world, and the long list of chores that haven’t gotten done. I’ve been relearning to love myself as a disabled person. Relearning to view my contributions to the world and my role in it. Today I learned there is a term for me, dynamically disabled. Someone whose…
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Life Sentence
sometimes my body feels more like a prisonthen it does an instrument for my mind. i feel trapped within it’s boundariestoo limited by the shattered confines. there are too many things I cannot do,too many places I cannot go.too many times I have to livewhen what I want to do is thrive. sometimes I watch the world through the bars,these everyday eyes in this routine face. i seep desire and…
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#chronicillness#chronicpain#Fibromyalgia#poem#poet#poetry#smallnervefiberneuropathy#SNF#spoonie#spoonielife#spoonies#spooniewarrior
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To the Pain...
To the Pain…
Wesley: To the pain means the first thing you will lose will be your feet below the ankles. Then your hands at the wrists. Next your nose. The next thing you will lose will be your left eye followed by your right.Prince Humperdink: And then my ears, I understand let’s get on with it.Wesley: WRONG. Your ears you keep and I’ll tell you why. So that every shriek of every child at seeing your…
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In the dark...
In the dark... a podcast about crawling out of your cave. #depression #loss #grieving #chronicillness
In the dark… – SavvySpoons – Living a life of limited spell slots. Coming back from a hiatus Misty talks about struggling to find light in these troubling times. — Send in a voice message: https://anchor.fm/savvyspoons/message Support this podcast: https://anchor.fm/savvyspoons/support In the dark… 05:42 Breathing through pain. 09:00 The pandemic life was my normal. 13:38 It's a cooking…
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Pining for a pandemic...
Pining for a pandemic…
I’m a horrible human being. I’ve been close to tears for the last several hours with no idea why. I ran through all the usual suspects;Did I eat? Did I sleep? Did I miss a medication? Did I take too much medication? I did all the fixes I could. The feeling remained. A vague sadness like a recent breakup or a friend moving away soon. Something ending. Holy shit. The pandemic. I’m sad that…
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#chronicillness#chronicpain#covid#covid19#fibro#Fibromyalgia#pandemic#spoonie#spoonielife#spoonies#spooniewarrior
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