welcome to oneEDSvoice

- a positively charged Ehlers Danlos Syndrome community.
  • join today!

The price of celebrating the holidays when you have chronic pain

I am often asked why I keep myself to such a strict schedule and seem rather private during the holidays. It’s true. I have a routine I follow daily. I know my body can handle between eight and 10 hours of activity on a good day and even less on a moderate or bad day. I know I can only drive for an hour before my pain starts to escalate and if I miss my medications by more than 30 minutes, I will deeply regret it. But, the holidays bring family and friends to visit and parties for work and personal occasions, holiday shopping and cooking, among other traditions, and every year I have to pace myself.

Albeit true that the holidays only come around once a year, I would love to see so and so, going out to eat is more fun than my couch and I can push myself well past my limits, these responses pose a number of challenges for me, especially being newly engaged and trying to manage blending two families and friend groups together.