Dysautonomia and Temperature Regulation

Daily writing prompt

How do you feel about cold weather?

I have always hated cold weather. In fact, in the summer, I used to sit on concrete driveways like a lizard heating itself up on a rock. I still dislike cold weather, showers, and cold pools. I live in Hawaii and it never really goes below 60 degrees where I live, the average temperature is low 80s, and it can go into the 90s but never in the tripple digits. The humidity gets you, though. I loved the weather here, unequivocally, until this past year. When I developed Long-Covid, which triggered POTs (Postural Orthostatic Tachycardia syndrome), a form of dysautonomia.

A symptom of this condition is that the body cannot maintain its own internal temperature. So I get overheated so easily now that I literally have an ice pack I wear on my lower back and an ice scarf I wear around my neck so I can tolerate being outside. This is an improvement, actually. A few months ago, I could not go outside at midday. I had to stay in my bedroom with the air conditioner on.

A few weeks ago I went to Hosmer’s Grove, which is about at 8,000ft elevation so the temperature was 56-58 degrees. Prior to Long -Covid I would have needed a jacket, shoes with thicker socks and a warm beverage to tolerate that temperature. Now I went up with a shirt, yoga pants, and slippahs (flip flops). I felt so amazing.

My mind was clearer, I could take deeper breaths, and I felt my nervous system relax. But I was also still freezing. Lol. That, to me, is the biggest irony: Part of me still gets cold so easily. The cold makes my arthritic hip hurt more, and my joints generally feel sore.

Yet, POTs makes cold weather, showers, and pools my primary source of relief on “hot” days.

I do not know how I feel about cold weather. Being the true elder millennial I am, I wish I could put “it’s complicated” as my relationship status on MySpace between me and the cold. Then maybe post Evenesence’s lyrics to their song Bring Me Back to Life:

Without a soul my spirit’s sleeping somewhere cold
Until you find it there and lead it back home

Instead, this elder millennial will try her best to keep cool, but not too cold.

Hosmer Grove, Maui, Hawai’i. Which is located in Haleakalā National Park. Image description: Tall Eucalyptus trees with a foggy background and some small shrubbery in the lower foreground.

Hello,

I’m Casey-Lee

I have been an RN for over 14 years and have lived with chronic illness since 2019. While I have always fiercely advocated for my patients, I struggled to do the same for myself. I had to radically change how I viewed the medical system, adjust my expectations, and unlearn my tendencies toward people-pleasing.

Recognizing the challenges of self-advocacy inspired me to create this platform. The “radical” aspect is that we acknowledge the many systemic and personal factors that impact our community.

Many people experience multiple intersecting identities that create barriers to care. Such as being a person of color and disabled, a woman and disabled, or queer and disabled. Each requires unique approaches to self-advocacy.

Our resource hub will continually evolve to meet the changing needs of our community. I hope this space nourishes, empowers and provides practical tools for navigating healthcare as an advocate for yourself and others.

RadicalRNAdvocate