33rd Story of Transgression: I Live from My Bed

This is a series of self portaits taken this morning, reflecting how I feel. I am experiencing both fatigue and pain.

Since Sunday I have been in recovery from Saturday’s storytelling event. Being unwilling to force myself to endure the kind of pain I did when I first experienced Fibromyalgia 6 years ago while parenting (and pregnant!), working full time, and volunteering means that I spend a lot of time in my soft bed. Pushing through is something I’ve done some kind of way for 20+ years. I’m over pushing through unless I really want to. 

Activity that can require recovery time in this phase of my illness = walking more than a mile, an hour on my feet doing chores, or sitting on hard surfaces for long periods (which means 98% of public seating in all venues). An event like Saturday, where I was out of the house for 8 hours, is hard on my body and requires days of recovery. As did my daughter’s graduation, sleeping in beds that weren’t mine, and travelling by plane and car. Essentially if I leave the house for more than an hour to two I will have to manage more pain. There are some things that are worth the extra pain – like following my creative dreams or spending time with people I love. Some things are not, like working a desk job. 

Alcohol makes these things easier in the moment because it helps me forget my pain entirely for a few hours. It also costs me loss of sleep and potential hangover symptoms if I get carried away so recovery takes longer.

I am isolated because of my disability and my inability to leave the house consistently to meet people. Social networking is my lifeline for human connection. I spend a lot of time in bed with Instagram.

Mostly I get bored. I am a highly intelligent woman that likes a lot of intellectual stimulation. But I’m not capable of reading books for hours or thinking deeply on a whim. The brain fog is the worst. I’d write and create a whole lot more if I had a clear mind.

Learning to honor my limitations is a big lesson in a world that would have me push through every kind of pain with a smile on my face. Today is not a smiling kind of day.

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