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A Snapshot: All In A Day (with Chronic Illness)

Chronic illness is often confusing, even for those of us who live with it. After 25 years, I still wonder how my body can be so unreliable and inconsistent--from year to year, from day to day, from moment to moment. For those living without disability, it can be difficult to understand how someone like me is out on the beach one moment smiling and walking and the next, needing to lie in bed with my collar.

On Thursday, I decided to capture a snapshot of the day, which started out with some beach time (about two hours, which is my max time). It was a sunny bright day, and I'm increasingly realizing just how sun sensitive I am.

I felt decent while sitting on the beach with the pups. I saved my walking energy for the walk from the house to the access point to and from the beach.

By the time I headed back and reached the stairs to our house, I was feeling like it was all I could do to get the dogs inside, get my shoes off, get them a snack and get myself to bed so I could be supine.

My autonomic nervous system was going wild with forceful heartbeats and tremulousness, the pallor had taken over my face, and I just felt generally unwell. But, because my ANS was so angry, I was unable to nap even with my guided meditation.

We had dinner, I tried to distract myself with some TV, and got into bed with my collar on--still feeling lousy and doing everything I could to try to calm my ANS (one of my biggest struggles). Unfortunately, the next day was a crummy one too--still recovering from the previous day.

I love being at the beach. Having the space to rest all day when I didn't feel well was much needed. It's just important to remember that chronic illness travels with us, everywhere we go, every moment of our lives. We don't get breaks or days off. It's with us in every decision of the day, as we weigh the benefits and consequences of our choices. It's easy to be caught unprepared for a flare up of symptoms. We're constantly carefully planning our days, while constantly having to readjust those plans as our symptoms change on a dime.



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Feb 13, 2023

So nice to see you smiling, and that look on your face with your hair splayed out! 🤣💖

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