This Friday marks the 25th anniversary of National Fibromyalgia Awareness Day. It’s interesting to me that on one hand, we’ve come so far: Fibromyalgia (FM) has been legitimized, testing has improved, and safer treatments are replacing dangerous meds. On the other hand, there are many who still don’t believe that FM is real. In honor of National Fibromyalgia Awareness Day, I’m sharing some facts for the public. Twenty-five facts that have already proved to represent just what having Fibro is like.
Last year, on the morning of NFA Day, I remember sitting up in bed with my laptop (in my “Nap Queen” pajamas), and saw that my article about twenty-five things people should know about Fibro was gaining some serious momentum. It has since been shared over 13,000 times!
This year, I’ve created a video to accompany the list. I cover six different topics: sleep, flare ups, sensitivities, warnings, insights and silver linings. Take a trip with me down fibro-fog-free Memory Lane. Let’s revisit those twenty-five things, with an upgrade.
If you can’t watch the video, or reading the list is more your style, scroll on.
- Every morning is a tough morning.
- I can sleep all day and still feel like I just ran a marathon.
- If I went out last night, I need a day to recover — its okay, it was worth it.
- When i’m tired, let me sleep.
- Certain foods make me flare up, i.e., peppers of any kind, sugar, caffeine.
- When I’m in a flare, leave me alone in a dark room (but check in). It makes me feel good.
- Yes, diet matters, but in flare mode, all bets are off.
- Yes, my face is swollen. No, I didn’t gain 5 pounds overnight. (I’m flared!)
- I have 3 different sizes of clothes in my closet to accommodate flare vs. non-flare days.
- Give gentle hugs please — my skin hurts.
- Bright lights, loud noise and too many smells overload my senses and make me nauseous.
- I play hide-and-go-seek with the elements — too cold, too rainy, too hot, too much sun.
- To you, car rides are joy rides. To me, they’re a painful roller coaster ride.
- Some days it’s OK to let my Fibro win. It’s a marathon, not a sprint.
- I can get moody. You would be too if you were in pain all the time, be patient with me.
- I can tell your mood as soon you walk in the room because my Fibro/spidey-senses are tingling.
- My day, week and month are carefully planned to accommodate my Fibro.
- If I cancel my plans with you, don’t be mad — I already feel bad.
- Your friend with Fibro who that has no pain doesn’t make me feel any better.
- “You should exercise.” My work day is my exercise.
- Going to the doctor makes me mad — it’s a reminder of my condition.
- There are no no-pain days, but my low-pain days are my happy days.
- Because of Fibro, the mandated downtime gives me the opportunity to write this blog, and I’m grateful.
- Because of Fibro, I get to spend more time with my husband.
- Because of Fibro, I’ve become part of a strong, supportive community that reminds me I’m never alone.