by Karey Shane

It’s difficult to describe the depth of loneliness that creeps into the soul of those with chronic pain and fatigue. Hundreds of waking hours in isolation eventually turn into tens of thousands of hours. Facebook photos on a person’s good day show nothing of the days in between where functioning beyond a bath and maybe eating two small meals a day are the norm – one might be brown rice crackers, berries, and a handful of cashews, the other just a protein shake (or perhaps both are protein shakes.)

When my pain and fatigue are intolerable, I turn my bathroom into a spa-like place. I realized years ago that if I couldn’t go to the spa, the spa would come to me. That’s when my journey in self-care began. The other day, my plan was to lie down for a rest in my quiet space spa, as I like to call it. It’s just two bath mats placed end to end like a bed, covered with a far-infrared heating pad, topped with a long towel and a towel roll for a pillow. I will have cranked the radiator up to full heat so I can lie down and be surrounded with warmth.

All of a sudden, I was too weak to make it that far–just a few feet away. I slid down along the bathroom cabinet wall and leaned my back against it. I felt as though threads had been stitched to every muscle cell in my body, then tied to the center of the earth. Every move I made meant pulling at the threads and resulted in ripping, inevitable pain. I felt depressed. Useless. Stagnant. My muscles hurt. Every move I made was punctuated by a groan. A sketch pad was nearby where I had planned to work on my fluid business plan. I muttered out loud, “Dang it. I’m just going to draw how I feel.” So that’s what I did.

Chained

No Strength

In a few minutes, I looked at what I had drawn, and I felt seen. I felt seen, even if the only person who saw me was me. I felt understood, even if he only person who understood the loneliness and physical weakness in the ink on paper face staring back at her was me. I didn’t feel so alone. And that made that moment easier to bear. I hope whoever sees my little sketches feels seen and understood, able to hold on with the hope that you, whoever you are, are part of a community who suffers with you. You are never alone. Know that even if you feel like you bear your pain alone, there are many who bear it with you. May that net of shared pain feel like a safety net you can allow yourself to fall on as you let go and surrender to what is.

I see you.

Love, Karey

Karey Shane is a Certified Aromatherapist and owner of AROMASOUL and Co., partners with Operation Underground Railroad (OUR).   She has been living life in slow motion with ME/CFS for the last nine years; still learning to surrender to the unpredictability of having a strong day or waking up to find she’s too weak to get out of bed. Passionate about healing trauma and the limbic brain by combining aromatherapy with mindfulness, she donates a portion of her small-batch, self-care essential oil-based product sales to OUR for survivor rehabilitation and prevention. On her strong, pain-free days she serves as the aromatherapist at an undisclosed center for survivors of human trafficking. Karey earned a BA in English from the University of Utah and from her bed wrote an underground novel on child slavery, Secret Speakers and the Search for Selador’s Gate, which earned a starred review from the School Library Journal, the audiobook being performed by Booklist’s Voice of Choice, Simon Vance. Karey is a wife, mother, grandmother, and is very grateful for her therapy dog, Chummy

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Patient Voice  is a special place online for members of the ME/CFS and FM community to share their stories. Our goal is to highlight the strength, joy, humor and beauty that can be found in a life changed by ME/CFS and Fibromyalgia. Our aim is to lift your voice a little higher and help your story be heard loud and clear. This is only possible thanks to our community of contributors. Together we are building a special place online where we can completely inspire and support one another.

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