I was scrolling through facebook today and saw a post for “walk 50 miles with your dog this month” for XYZ charity. I looked at my dog and said, “When this new medication makes me feel better, we can do this.”
A friend asked me to go to a large mall in the area, and I declined but added, “When this new medication starts working, I’d love to go and walk around.”
A colleague asked me to come and chat about the book I wrote, but her office is on the other side of campus. I responded with, “When this new medication starts working, I’ll stop by soon.”
I’m always waiting to feel better.
After 20+ years, I still struggle with accepting my disease and the limitations it has place on me. I always say, it’s not the end of the world, rather it’s another way of living in the world. For the most part, I think I have done a good job making a good life for myself. Then I catch myself with “when” statements. I’m always waiting for that better day to come and honestly, it probably won’t happen. Things have become much more difficult over the past year. My mobility is decreasing, my weight is increasing from steroids and depression, and my heart is breaking.
I have to learn how to move forward on what I can do instead of always waiting to feel better. It’s a mind shift that I am struggling to work through. Wish me luck.
I wrote a nice blog called my moment of when. When I stopped waiting, when i stopped talking about hurting, when I got up and moved. My moment of when is a discussion I have to remind my self of almost every week. Your insightful blog helps me remember to remind myself of my moment of when.
Wow, Kelly, what a powerful, thoughtful post! It’s so hard to juggle and balance those feelings of acceptance and living life as it is now with constantly waiting (hoping) to feel better. Thanks for voicing what so many of us feel –
Live with ME/CFS
Thank you Sue!