The Reality of Life with Chronic Illness

I’m in pain. And maybe it is endless, it is, let’s face it. I’ll be seeing a number of specialists, taking meds, having surgeries, and unable to work for the rest of my life.

I’m having trouble accepting where I’m at and being okay with it. Unable to work, unable to write much, unable to think clearly, and the expectation to do those things. I can’t even shower without sending myself into a flare-up. Tasks that were once easy are an immense chore and it doesn’t seem easy for people to grasp the extent of my pain and disability.

It’s a constant battle accepting that, but I’m not alone, it’s not my fault, and people love me as I am. It seems straightforward enough, but I have to remind myself of these things daily.

There is still life and joy, moments that are worth it in the middle of all the pain. It’s difficult but it’s worth it.

Existing is exhausting. Life in general is hard but when just breathing, standing, and walking causes immense joint, muscular, and nerve pain, it’s discouraging. It’s a constant fight to keep going, which in the end is exhausting.

Often, when you get sick or injure yourself, you’re able to go to the doctor; they run a few tests and the diagnosis is straightforward. They send you home with some antibiotics and anti-inflammatories, and within a few weeks, you’re better.

I have no hope of getting better, just managing as best I can to function and not get worse with PT, daily exercises, and a handful of medications. This is the reality with chronic pain and chronic illness, it’s a constant fight and balancing act.

People tell me I’m strong. I know what they mean. But I don’t have a choice it’s fight or give up and die. So being strong doesn’t feel like a compliment when for me it’s simply surviving. If I had a choice, I would like a break, a chance to be weak for a time, to be able to rest, be pain-free for a moment.

It’s hard to grasp chronic pain and illness until you’re living it, and it’s even harder once you are, to accept it, to be okay that you aren’t getting better, and to find the will to keep going and get up each day, or most days despite it all.

We with chronic illness know we are strong but really, we are exhausted. Next time you see someone with chronic illness maybe rather than tell them how strong they are give them a hug or tea if they can tolerate it and give them permission to let go, and rest for a moment, lend a comforting shoulder or a cozy sofa with lots of blankets and treats, we really just need permission and a place to rest for a moment.

A week and a half of migraines…

I’m going on a week and a half of migraines… I’m exhausted. My head is spinning, I can’t think straight, I’m wearing my sunglasses inside and my noise canceling headphones to try to lessen the sensory impact on my sensitive nervous system. One of the worst things–how difficult it is to write. I want to write so bad. I miss it. I love it, and I feel as if this passion is being taken from me along with everything else, unless I can reshape it and rework it to work with my body and mind and my many new limitations, which have become a maze to navigate. As if writing alone wasn’t hard enough, now to try to get these two to work together. I’ll see what I can do.

This is one thing I’ve learned with disability and chronic illness, you have to get creative with how you do everything, even things you were familiar with, you have to invent new ways to do them that work with your body and mind and become your own inventor for all your accommodations.

I’m having to do that now and it’s a challenge. I don’t know how I’ll do that with my writing or where to start but here’s to trying because I’m not quite ready to give this dream up.

Writing Through the Fog

I want to write more but the mental fog, the burnout. It hurts knowing how much I love to write, how much writing means to me, and being too exhausted, in pain, and foggy to focus on it much at all. 

I know what my writing could be and maybe that’s part of what holds me back from writing the little bit I can. I fear my words and thoughts will come out jumbled. The thoughts get stuck and sometimes lost altogether before making it to the page. 

But I’ll try writing even though it may be jumbled, messy, and incoherent at times; at least I’m writing and that’s something. I’ll write in short jumbled snippets if I have to. So here it goes. You can follow along if you wish my writing may be messy but it’s me, doing what I can.

The Nature of Healing

“As I sit in the humid air, exposing my wounds, nature meets me, exposing her own wounds.”

An essay very personal and close to my heart had the honor of being published recently in the first issue of Mental Rhythm Magazine. They are a literary magazine that seeks to end the stigma around mental health, an issue I also care deeply about. So here is my very honest essay about some of my own experiences with depression and anxiety.

How Nature Helps Me as an Autistic Person

Being autistic means I am often overstimulated by my environment. Sounds that are tolerable to neurotypical people are disruptive, distracting, anxiety-inducing, and even painful for me. A few conversations happening in a room at once, music that’s too loud, or sudden noises are some sounds that are triggering. 

Other senses are also heightened for me. Flashing lights are disorienting, bright lights are painful, fast-moving images are disruptive. My senses of taste and smell are heightened and I notice things most people don’t and get easily overloaded by multiple or intense flavors or scents. Certain textures are very disruptive as well. For example, I can’t handle anything soggy. 

Normal life can be overwhelming when all these stimuli add together often causing me to be so overwhelmed that I have a meltdown or shutdown. I can’t focus, communicate, or function and pretty much freeze. 

Many autistic people have similar experiences with varying sensory sensitivities. 

I often get most overwhelmed being indoors because this environment is full of technology, people, and other stimuli that I am sensitive to, which all add up.

Because of that, nature has often been a relief for me from the constant sensory overload found indoors. Being outside, in nature, has brought calm and helped me out of meltdowns and shutdowns throughout my life. And I think that’s why nature has become so meaningful to me.

When I’m outside with plants and animals, I do not have to speak to anyone. I am free to rest and enjoy. Trying to verbally communicate my thoughts and feelings has always been a struggle. It uses most of my energy to verbally communicate, often leaving me overwhelmed. Then there are misunderstandings which is again exhausting when I spent so much of my energy trying to communicate. 

Plants and animals communicate in different ways. They communicate through body language and other nonverbal forms of communication, which makes it easier for me to relate to them because I don’t have to worry about trying to communicate verbally. 

In nature, I can just be. Plants and animals aren’t all talking at me, demanding things of me, they are also simply living and being. 

In nature, things are quieter. Yes, there are still sounds, but most of these are quiet and rather calming and peaceful, like the songs of birds or rustle of wind. Often they are simpler sounds just a few notes, compared to our indoor sounds that cover a whole range and can often be harsh frequencies or very complex and busy, becoming easily overwhelming.

In nature, life moves slower. Everyday life in a neurotypical society is often very fast-paced, we are expected to always be busy. Because of our sensitivities, autistic people can struggle to keep up with the demands of everyday life, which can lead to burnout if we keep pushing to keep up. We were meant to live life at a slower pace. Many animals and plants move at a much slower pace, spending most of their time resting, compared to their human counterparts. When I’m in nature, I slow down too, with all the plants and animals around me. I walk slow, I stop and watch, I sit and take it all in. 

These are a few of the reasons I find relief in nature as an autistic person. Being with nature helps me calm down and take a break from the many overwhelming sensory, social, and mental demands of everyday life. 

Introducing our Web Content Editor

I am honored and excited for this opportunity to help Deep Wild Journal share their message of writing from the backcountry, appreciating and caring for wild places.

Deep Wild Journal

We are thrilled to announce the addition of Corrinne Brumby to the Deep Wild staff. Corrinne is coming aboard as the Web Content Editor, providing much-needed assistance in our permanent efforts to help Deep Wild Journal find its true audience. But she’s got lots of skills and enthusiasm and will no doubt contribute in lots of ways.

A naturalist and nature writer, Corrinne spends much of her time exploring the wetlands and woods in Florida. She earned her MFA in Creative Writing–Nature Writing from Western Colorado University.

Corrinne’s essays, fiction, and poetry have appeared in Western’s Pathfinder MagazineThe Great Isolation: Colorado Creativity in the Time of the Pandemic, Magical Women Magazine, and Odyssey Online among others.

Welcome aboard, Corrinne!

View original post