My older daughter woke from a bad dream at 2:30a and came to me for TLC. Neither of us could fall back asleep…fibro is a rotten bouquet garni of contradictions like fatigue and insomnia. We made a very sleepy Happy Birthday video for my Dad around 4am. I napped fitfully after school drop off then got ready for Husband’s celebratory work event, a ribbon cutting and block party for Rose Collaborative. I left the celebration to pick up my daughters from school in time to meet a new babysitter who was supposed to help with bedtime as Husband had lots of much deserved celebrating to do.
The sitter didn’t show up or respond to text or phone call.
With no sitter, and being a sucker for my 6-girl’s “I miss Daddy” tears, off we went to the block party. Much fun was had! We left for home as Husband headed out for a celebratory dinner.
In the past I would’ve joined him but with fibro, nights out are rare and tough for me.
No matter how much I rest during the day, I’m exhausted by early evening and in need of my fibro meds. If I go out, I wake the next day with a fibro-fatigue hangover.
Rosebud fell asleep easily, but Junebug missed her Daddy and had a hard time winding down. She said she wouldn’t/couldn’t go to sleep until he came home. Our 4-girl is a wild card so I couldn’t go to sleep until she did. There was nothing to do but watch cartoons and wait.
Husband lovingly prioritizes my fibro needs and would’ve come home at my first text of distress but he’d texted earlier in the night from a friend’s phone that his was out of juice. That was before things turned to shit.
As the clock ticked, I texted his friend: SOS, I need Husband, my day tomorrow is ruined and I’m not sure I can go to our friend’s wedding this weekend either. Unfortunately these messages didn’t make it to Husband until hours later. When he did read my texts he rushed home and everyone went to bed. I did make it to the wedding, but also suffered through a few unnecessary days of fibro fatigue/pain.
No sleep/interrupted sleep/not enough sleep = fatigue and pain for me. Living with fibro is a roller coaster of inconsistency, unpredictability, fatigue, and pain. It also reminds me to count each good or even semi-good day as a win and to figuratively and literally stop to smell the flowers. Substitute “fibro” for “world” and you have my current M.O.:
The world is violent and mercurial–it will have its way with you. We are saved only by love–love for each other and the love that we pour into the art we feel compelled to share: being a parent; being a writer; being a painter; being a friend. We live in a perpetually burning building, and what we must save from it, all the time, is love. —Tennessee Williams, New Orleans, 1982