Some days you may see me happily buzzing around town with my kids or my friends and then some days you may see me pacing like a turtle in tar with my arm crutch, or even being pushed by my hubby in my wheelchair. Puzzled by the inconstancy of my disease?… well crap! So am I! All I know is that I have good days and bad days and I definitely don’t get a choice over which days are which!
What people need to know about our good days and bad days:
- It’s next to impossible for me to make commitments to anything because I NEVER know how I’m going to feel.. So don’t pass be off as being flaky or non-committal… I’ve just had to learn a lot about going with the flow… and there’s no predictable flow
- Don’t assume because I’m up and about like a happy clam that I must be “faking” or “cured”. I will 100% take advantage of wellness and am not “playing sick” when I feel well just so the world knows I have this condition!!
- Don’t assume because I’m in bed or having a hard time moving that I must be “hamming it up” either! When I’m down, I’m really down! I wouldn’t be walking like Bambi on stilts for my own benefit! It sucks, ya’ll. That’s the truth!