If you are reading this, congratulations! You have survived another day. And that’s something when you’re living with or supporting someone with diseases like myalgic encephalomyelitis, fibromyalgia, long Covid, POTS, mast cell activation syndrome, and similarly complicated fatiguing illnesses. (Even listing them is exhausting!) Each day you keep breathing is a victory to celebrate. It sounds cheesy but it’s true. After 22 infuriating, soul crushing years of illness and pain, my one secret to keeping my sanity is simple: Gratitude.
It’s about finding the smallest of things to prove that I am a part of this world even if it’s a re-defined role – especially now in the thick of winter in Salt Lake City, Utah. I can see the snowy mountains in the distance. They look like someone sprinkled powdered sugar all over them. Sometimes during a snow storm, pain will keep me up through the night, but then I look out the window in the wee hours and the snow looks like magic sparkly fluff across the lawn and tree branches. Then I look up and see a beautiful Owl perched on the wire by our house, confidently and patiently waiting for a mouse to snack on. Peaceful fulfilling moments I most likely would have missed living a “regular life”. These moments don’t take away the pain, but they do give me perspective, even for a glimmer of a moment.
I’d like to encourage each individual affected by chronic illness to make February a month of love. Self Love. Love for caregivers and loved ones. Love for the medical personnel working each day to inch progress further. Gratitude for the hard-earned empathy and resilience only chronic illness can teach. Pride that you have made it this far and confidence that you can keep going.
If you are totally out of Love and Gratitude, I understand. I have absolutely been there, over and over again! I also recommend borrowing a little Love from the folks at the Bateman Horne Center. Each individual from the medical staff, research team, education ambassadors, administrators, board of directors, donors, and more – all are driven with love in their hearts and a passion to promote understanding and informed care for all who are marginalized with these illnesses.
No patient should have to justify their symptoms and illness to their doctor just because they are tricky to quantify with tests or scans. No family should struggle alone. No new doctor should emerge from medical school without a way to identify these illnesses and have tools to help ease suffering. No new patient should be shuffled from provider to provider (for years in many cases) before receiving an accurate and timely diagnosis and up-to-date treatment guidance. These are the things the BHC is trying to change.
So, for my February month of love, I’m focused on loving and being grateful for the Bateman Horne Center. They are NOT “for profit”- they ARE “for patients”. They are our advocates. Most of all I’m grateful to know that I don’t suffer alone and that the BHC is here for each of us. Especially when our gratitude and love have run dry. Here’s a big hug from me to you.
ME\CFS & FM endurer for 22 years