Tired of "Paying" for doing Normal-Human things!

Christmas party… 1st one I had been invited to in years, because I have been so socially isolated by illness. I had to spend the entire day resting, meditating, napping, quietly writing/reading, to conserve my energy enough to make it. I had to eat at home before leaving, because I have too many food allergies to eat anything I do not know. I had to bring a protein bar to eat there to re-fuel and have enough energy to continue mingling. I had to use my walker…so had to deal with questions from everyone about what my condition is.

Had to bring my inhaler in case I had breathing difficulty… my epi-pen. I had to feel awkward eating a protein bar, while everyone else ate the yummy food… I ran out of energy and had to re-fuel again, I ate the fruit… nope, forgot I am allergic to watermelon and developed a rash all over. Had to be cautious the entire time about walking too much, dancing too much, talkin/singing along too much. Had to give myself a strict 4-hour time-limit.

The party was great, despite all the efforts… the next day I suffered badly with profound fatigue, body-wide pain, a headache, and respiratory distress for several hours as I had simply expelled too much energy the night before to be able to breath correctly the next day. Day two, breathing was improved, but the post-event malaise and fatigue were in full-force. Day three a bit better, finally by day 4 I was back to my baseline.

Pay-back, this is the life of us with chronic illness… we have to constantly decided what is worth pushing for, what is worth the risk, or even full-knowledge of the fact that we will have to pay seriously in increased symptoms and suffering for one thing we want to do. We do it anyway… because we need to, our mental health demands it, we have to sometimes jeopardize our physical health in an effort

to protect our mental health, and do the things we live, and live the chance to feel like a human again, experiencing the world, and not just caught up in a 24-hour bad movie of our sick lives.

We are here, we are trying our best, we are lonely, we wish we could participate in life without such harsh results.