Originally published May 12, 2015
May 12th is National Fibromyalgia Awareness Day. Fibromyalgia was suddenly introduced into my life in 2011 after my grandfather’s death. Within 2 weeks of my 1st symptoms I was crying at the ER not understanding why my body was so weak. I begged for an IV full of miracles to pull me out of the fatigue.
As I was researching for treatments those first few months I came across a story that spoke to me. Christine Miserandino wrote a true story about how she explained lupus to a close friend. The title of the story was “The Spoon Theory.” She beautifully details how people with chronic pain have a limited amount of energy each day. Healthy people and chronic pain sufferers wake up with 6 spoons worth of energy. Simple tasks like showering can suck up 3 spoons for a person in pain, leaving them to choose the rest of the day’s activities carefully.
Although the story highlights her battle with lupus, it is a theory that speaks for many with chronic pain (CFS, rheumatoid arthritis, fibromyalgia, myalgic enchephalomyelitis-ME, etc). I’ll only speak for myself but fibromyalgia means these things:
- I have to plan ahead EVERY DAY! I wake up with a certain amount of spoons. Cleaning the kitchen may not be an option in the evening if I have used all my spoons at work. My days off are also planned accordingly. Sometimes being exhausted at night may mean that I’ll feel worse the next day. I don’t want to use up all my spoons every day because the unused spoons don’t rollover.
- I am paranoid about getting sick. If you are sick and you interact with me I could be sick for weeks. My immune system is weak. I have literally fallen sick HOURS after being near a client who didn’t disclose that they “weren’t feeling too good today.” Most people with fibromyalgia or autoimmune disorders need to be VERY careful about being near sick people. I have literally passed out in stores not knowing that I had a fever.
- Fibromyalgia means I have to say no all the time. No, I can’t host such and such event at my house. No, I can’t help out with _____. No. Sorry but I can’t stay that long because I am useless if I get less than 7 hours of sleep. Getting less than 7 hours of sleep feels like having the flu.
- Sometimes I forget about things because fibromyalgia affects the brain. It’s called “fibro fog.” I could start a sentence and then forget what the hell I meant to say. I forget names of streets, people, where I am….you get the picture. You’d be a sweetheart to get me Post-It notes for my birthday.
But this post is not meant for me to gripe. It’s to boost awareness. I recommend finding a support group to help you share your thoughts and gain knowledge about your illness. The knowledge and support I gained from a local Fibromyalgia Support Group helped me and my family learn more about what to expect.
And I know I’m not alone.
And warriors like myself, who want to still do “normal” things, just want some understanding. I don’t mean to be a party pooper. I don’t mean to sit out on some activities. And I’m not trying to be rude by running away from you or your coughing child.
Recommended Resource: National Fibromyalgia and Chronic Pain Association
I also have a Pinterest board for Fibromyalgia support filled with healthy recipes, quotes and remedies for our painful symptoms. Follow me today!