One Step at a Time

6:15 this morning, Scout, my grumpy-old-man orange tabby, is stepping on my head as I begin to come out of another dream that involves my alter-ego desperately racing through a maze of sorts (need an analysis of this 😄 ). As soon as he sees some consciousness from me, he begins to pleadingly meow for one of us to get up and feed him-thanks to his hyperthyroidism-getting old is tough even for him. 

As the dream seeps out of me, the reality of my body pours in. This is every morning. Every morning when I feel swollen-filled up with wet sand in my arms, hands, legs, and feet. My body talks to my mind and says, “I don’t want to move. I don’t want to get out of this bed.” It’s a pleading that I spend one half to an hour every morning arguing with. Over and over I say to myself, “Get up. You have to get up.” I’m shooting for 7:00 to 7:15 each day, so that I stay on a routine for sleep. Sometimes, I get up and after a pee and brushing my teeth, I head to the kitchen to take the medicine and supplements that have helped me forge on. (I will post a list and reasons why soon.) On really bad mornings, I beg Kelley (who generally is already up having his morning coffee and getting caught up on what’s going on in the world) to bring me my meds. Generally, it takes about 30 more minutes for things to kick in, and I’m ready to move.

Today is a special day. I signed Kelley and me up for a group trip of hiking and kayaking. It’s the first such commitment I’ve made like this since being hit with Fibro and have actually followed through on. Friends, colleagues, and family know that since September 2018, I haven’t been a woman of her word. This has been really devastating for me. That has always been my motto- What I promise is what I do. However, I have canceled on commitments so many times this past year, I am now hesitant to prearrange anything at all. 

But my heart, my longing, is to do the things I love: hang out over drinks with friends to talk, laugh, and cry, go for a walk in the woods, go to yoga class at 8am (would love to do the 5:30am, but not sure that will happen), commit to a new job, volunteer regularly, learn to play ukulele at Thursdays Flybear Bookshop class, get down and play like a kid with my grand-daughter, Copeland, and so much more. The months of September through February found me mostly in my bed. December 7th was my first day of long term leave from my teaching career of 32 years. Those first few months, I barely did anything but try to be comfortable with heating pad, fuzzy blanket, pillow props, pain reliever, and sleep. I’d hear Copeland laughing and talking with her parents and Kelley in the living room. I’d drag myself out of bed determined to play, too, but soon realized that even just sitting in the chair was just too much for me. I’d slump back to my bed, many times crying uncontrollably for the loss I felt. I felt imprisoned in my own body and couldn’t see any way out of it.

The most debilitating part of Fibromyalgia for me has been the “Fibro brain fog” and the draining of ALL energy. (In a later blog entry, I will talk about what I’ve come to understand about why this happened to me.) In bed, I’d often find myself in a hurtful position and would stay there trying to convince myself to move for several minutes. It just seemed too hard to adjust how I was laying. The brain fog made it impossible for me to really attend to reading, writing, talking. I did start listening to audiobooks which helped me weather the worst of things. This time led to a deep sadness; I never wanted to use the word depression, but that’s what it was (and still is at times). 

This morning, as the rain poured down outside our bedroom window, I reviewed every possible way of canceling (once again) and just staying home. Knowing we had to be ready to leave the house by 8:15 (with all the packing for the day still to go), I was really close. However, my search of the Weather Channel App showed that Mesick wasn’t going to have rain all day. I also thought about the work Kelley had already put into getting the trailer and kayaks ready to go last night, and the fact that this new like-minded group in our area of Newaygo County would be really good to get to know. If I canceled this time, how would I be able to show my face at another time after all the planning and communication that went into this trip? And so, as Kelley woke up and went to feed Scout and Willow, I did my morning routine (well enough to go get my own meds this time). 

As I sit in the car writing this entry on our way to meet up at Manistee River Launch-Hodenpl Dam, my body is again pleading with my mind and heart. “I can’t do this! I’m not up for a four-mile hike and then kayaking down the Manistee. Can’t you feel the sand-filled, noodly arms and legs?” Yes, they both reply. But, I’ll open the door when we get there and step out into the dirt road, smiling at Mike who will be driving us up to the trailhead. One step at a time and soon I know I’ll be feeling strong again. Just hard to convince my body of that. 

I will write in an upcoming blog how I’ve gotten to this point; many, many nurturing supports. Certainly, not my willpower. I have come to celebrate my strength and courage, knowing that it’s fed and cultivated one supported step at a time.

***



After the trip update: We’re home at 8:58! Wow, that’s a long day for me. However, I’m feeling happy and energized. The day was perfect and the group of people- wonderful. I felt connected with “my people” right away. Soon after stepping out of the car, I was able to “turn on” and the pain and weakness soon went away during the walk. I had little noticeable pain through the 4-mile hike and most of the 10-mile kayak. Towards the end, I had to do my stretches (I’ll get into that in another post) because my neck and shoulders were seizing up. However, at the end of the trip (at Red Bridge which is really white in color), we were met by a stiff gin and tonic with lime. That made all my stiffness go away😊 Now for some sleep (hopefully). 

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