Locked Out: 24 Hours In My Fibro Life

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Husband is out of town for a possible new work project and I’ve just come out of a five-day fibro flare. He was concerned he would need to cancel his trip but A. Thankfully it ended in time B. I’m resourceful even when in dire pain C. I adamantly refuse to let my health hold back his self-driven success.

8-10a: Due to fibro I have childcare help from when school gets out until bedtime when Husband is away. Rosebud has a mild cold and I’ve been up with her each night for hours, rubbing her back or reading books while slurring words due to my night meds, so I’m more exhausted than usual. I get the girls to school, rest a little, then go outside to garden for pure pleasure plus mental and physical health.

10a: I’m locked out of my house with no phone and new shoes that are not yet broken in. The lock was set differently because of a new sitter and I didn’t set it back due to habit, and fibro fog.

11a: I walked 10 minutes there and back to retrieve a spare key from a friend. I’m home again, sweating hot, and can tell my feet will blister. Because of the lock-out I missed an appointment that I was able to resked for the next day. My exercise today was supposed to be a grocery store trip: solely shopping for four people, loading, unloading, and putting away can be hard on my body. I don’t want to risk a flare, especially with Husband away, so I can no longer go.

11:30a: I dejectedly cancel a small gathering of moms from my daughters’ school at my house that I was really looking forward to: my appt. is now at that time tomorrow. Due to fibro’s unpredictability I cancel almost all the social plans I make these days. Even if it’s a date with a friend at my house, or cognitive therapy on the phone, those sometimes get cancelled too because of a bad night’s sleep and therefore the need to nap before school pick up.

Much of my sked revolves around or occurs between school drop off and pick up, though some days I’m too medicated, tired or hurting to do either. Primary parenthood, especially stay-at-home parenthood, is a consciously chosen but short leash. Parenting with chronic pain is an even shorter one.

2p: After my day and plans for the next went awry I wish I was headed to my therapist, but here I go to my daughters’ play/talk therapy session.

4p: The session was good for Rosebud (6) who talked and listened a good deal as usual, and for Junebug, who at 4 is an advanced, expressive talker when she’s in the mood. She talks more when her big sis is with her. As for me, especially today, it’s gratingly, emotionally painful to hear—almost daily right now—that my health worries them and despite what we explain (as best as possible on their respective age levels) they think I’m going to die or am dying of what they currently call fibroMEalgia. I again hear in between the lines of their confidences how much they need more consistency. We haven’t yet found it possible and admittedly may not. It’s hard enough for families who don’t have a chronic parent.

8p/8a: Bedtime with sitter help goes well and husband is home when we wake up in the morning. We all scurry out the door for our daughters’ PK/K Mardi Gras parade.

Brass band, smiles, beads or parade throws, and King Cake all around. I like to chat or play with my daughters’ friends and see teachers of past/present as well as friends. The school is our second home of four years. I have an endorphin-filled morning with Husband and our girls.

On the fibro front, one well-meaning hug is unexpectedly tight. It hurts.

I’m kindly asked how I feel or sweetly told I’m often thought of or missed, but I have on my “I’m at an event for my kids” armor, so I give my rehearsed, oft-repeated, slightly and purposefully flippant, “Every day is a new day” or “We’re topsy-turvy” answer in order to stay armored.

The other choice would involve tears.

Armored it is.

10a: By the time I finish my appointment and am back home all of my energy is sapped. Still, I’m lonely after the high of the parade. Among many other fibro-related wishes, I really wish my living room was full of adults gabbing and drinking mimosas post-parade as intended.

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