A Brief Repose

just let me breath this night air a moment

let me remember how to feel joy in my heart

cool night air whispers 

whisking away a year and a life of pain

I remember what it means to relish life 

to be thankful for the little things

I remember what it means to love you. 
I do love you 

with every grain of my being
tomorrow we go back to a life worth living

tomorrow we go back to the fight

but just for this brief and shining moment
we rest

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Telescoping

The fatigue is never ending 

bone deep silent screaming

can exhaustion scream? 
the weather shifts and my body crumples

falling.tumbling.stumbling 

weakness like hard cold hands pull me back into this place again

realigned and readjusting

trying not to curse my own name
can you believe I have value with so little productivity? 

Question heart

hands shake from medication and determination

pushing through or laying still

eyes slide over me unseeing

invisible 

I press my flesh into unreasonable contortions

sticky sweating slow implosion
persevere or something

it’s all the same

Fatigue

​I am tapped out. Exhausted. deep exhausted. The kind that rattles your bones and slithers beneath your skin, weighing you down. soul heavy.

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Still I knit. knit. knit. gotta earn that grocery money. medicine money. dentist money. Gotta earn my right to live. 

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I want pizza, a gallon of coffee, to not have to worry about groceries so much, to not feel so guilty about everything. 

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I want to feel not quite so tired, I want my muscles not to burn all the time. 

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But I am here in this life, at this time,and this is what life is, so I will watch this show, close my eyes a bit, and keep going. 

Knit. knit. knit. 

Doing ‘Well’ when You are Chronically Ill

My health has been doing relatively well lately. That is to say, I am not in an illness or pain flare currently. But what does that even mean for me and others with chronic health or pain conditions? 

For me, it means I may feel “ok” as long as I am sitting and doing quiet non physical things. It also means that simple activities like sitting up from laying down, standing up, or walking from one room to another doesn’t give me an asthma attack. 

However even when my baseline health is slightly improved I still have to be careful. Just because I can walk slowly doesn’t mean that cleaning sprees or even small organizational tasks won’t cause me asthma attacks and pain flares. I know at this point that keeping a decent base line of health, that allows me any sort of quality of life requires I not push myself. Pushing myself only results in my ending up overextended, which in turn could result in a days, weeks, or even months long flare. 

What this usually means is that I have more emotional energy to worry and plan but not enough physical energy to do even one quarter of the things that need doing. Things that need doing because of my health. 

I day dream, worry, and plan a lot during these times, about things like getting a part time job (how long could i keep it before i got sick again? could i even get hired? could i find a job where I was sitting all day and not talking on the phone? what hours could I work? how would i avoid smokers and perfume wearers? how much worse would it make my next flare? would it cause a flare in a few months? weeks? days?), cleaning house in ways i haven’t been able to contribute in recent years, and making unrealistic lists of things i need to do now that I might have energy.

 I’m never able to get as much done as I had wanted. Even when I am feeling ok, my stamina and health just aren’t what they used to be. I try to balance guilt for not being able to do more and realistic expectations given my limitations. Ideally I would prefer not sliding into a pit of internalized ableism and self loathing because I am not doing more. So I work hard to maintain the best balance I can, no matter how exhausting it is.

Sometimes it even works. 

A Different Sort of Debilitating

I have anxiety. 

Often my anxiety is situational, because of concerns about money or lack thereof, my health, the kids, the world, the well-being and safety of my partners and friends, my ptsd being triggered, or one of a million other things in response to real life stress. Sometimes it seems likely to be hormonal and/or dysphoria related, and sometimes it is from sensory overload or Autistic burn out. 

When I was younger I was ashamed of and overwhelmed by my anxiety, as it resulted in my being afraid of anything and everything. Truly everything as far as I could understand it. As I have gotten older I have gotten more self confident, more emotionally stable, and more content with who I am as a person. Anxiety doesn’t cause me to shame spiral anymore but it is still pretty debilitating pretty often. 

During times that my anxiety takes hold, no matter the reason, my fight or flight fear response flares so hard I am frozen. Any sort of activity would usually help me break free, but literally any choice sends me down an anxiety loop of what ifs and escalated fear so deep even my brain freezes up. 

knock knock

who’s there? 

nobody.nothing.despair.


So here I sit, trying to soothe away the hammering of my heart,the adrenaline burn in my joints. Reminding myself that everything is currently as ok as it ever is, and there isn’t actually a saber tooth tiger over that next ridge waiting to pounce on me. 

everything is fine. everything is fine. 
I force one foot in front of the other if I am able, or rest if that is all that is possible, ride the storm out so that I may survive as intact as possible, to move freely on another day, maybe tomorrow, or the day after that. I remind myself it is ok to conserve my energy if it is needed, that I can rest before I am pulverized, that I don’t have to be bleeding to be worthy of rest, help, or healing. 

You don’t have to be bleeding to deserve rest, help, or healing either. Your struggle is real. Your hardship isn’t imagined just because it isn’t the narrative of the easy majority. 

We are both real, both valid, you and I. 

ground to the bone but existing. 

I am always learning to love me better, more sincerely. To embrace myself and let this flow over and around me in honesty and acceptance. Whatever that means on that day, in that moment.

 I love you too my friend, I can’t promise that it will all be ok, but I can promise I am here to listen if you need an ear. I am here to support you if you need a familiar hand to hold. 

Someday I will be able to breathe again

Taboo

I know society says I am not supposed to talk about my pain, anxiety, and struggle. It is only appropriate to suffer gracefully and in silence. 

conveniently. 

prettily if possible.

I should be inspiring or invisible. 

But I am not very good at either, so here we go. 

Let’s talk. 
I have chronic pain and fatigue. I have acute asthma/AERD. I have anxiety and depression, that could be situational. it’s hard to say….there are other things that impact my ability to cope but that is a long and tedious list so I will forgo that. 

It has become increasingly difficult for me to do anything at all over the last few years….and I do mean anything. Right now I am having an asthma attack because I got up off the couch, walked into the bedroom, sat down on the bed, and plugged my kindle in to charge and write. 

People tell me I am resilient these days, strong. It’s my most received compliment. But I am not strong, or resilient, or inspiring. I’m just a person struggling through this life. I get up every morning and do what I have to do, because it is what I have to do, not because I am stronger than anyone else…certainly not to inspire you. 

Those of us stuck in the trenches of chronic illness and disability don’t feel super human strong, resilient, or inspiring. We don’t want to be your lesson in fortitude. When we receive compliments for merely existing* it feels at the very least well intended but patronizing, and sometimes downright hurtful, tokenizing, or harmful.** 

Sometimes empty compliments like these seem to communicate “oh my, I find your life unimaginably horrible, I am so glad I do not have to live it. whooo.” As you can well imagine, that can be painful to hear. 

Chronically ill and Disabled people are all different, complex, talented, damaged, beautiful…we all have different gifts and weaknesses. Many, if not most of us would much rather be complimented for our work or skills, for the people we are, than for simply not believing death would be better then the lives we have. 

*h/t to Jena Gong for the verbiage 

** there are some types of invisible or mental illness in which it may be appropriate to tell a person that they are strong and resilient for continuing to be alive, and they should not be discounted or erased either. 

Liminal

​I’m not doing well right now. 
I worry about dying, asthma or an infected tooth. 

I worry about leaving my family alone.
I worry about being a burden-dragging people down

im so tired of fighting so hard to repeatedly have it come to nothing

I worry I’m giving up,  burning out, or burning up
I worry about not being able to work for weeks because the kids and I are sick, because it’s dangerously hot, because I have a toothache
no margin for error 
my hands only hold errors and despair

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I have intrusive thoughts and don’t know who I’m supppsed to reach out to. 
I am to tired to figure it out. 
to tired to find the right words, pay the proper respects
to tired to find the bridge 
to tired to be the bridge 

maybe next week I will be inspiring 
maybe next week I will be educational 
maybe next week I will be productive 
maybe next week I will be worthy 
maybe next week I will be proud

today all I have is survival
today all I have is grinding step after step after step 
today all I have is that I am here and I wrote this 
today that will have to be enough