I snapped this picture after two hours of crying. I’m exhausted, sore, and depressed…very depressed. When my pain skyrockets, depression hits me with an unrelenting force that knocks me off my feet and keeps me pinned to the ground, assisted by the ever dreaded mom guilt and the ever present chronic pain guilt. I’m pretty sure mom guilt is easy enough to understand; it’s the guilt mother’s have when they can’t be and do everything society tells us we’re supposed to be and do. Chronic pain guilt is the guilt those of us living with chronic pain experience when it comes to how our disabilities affect our loved ones.
I am on a deadline, I’m trying to complete REBEL SONG and get it off to my alpha’s before I need to send it to my editor. I’ve been writing somewhere around three thousand words a day, and my wrists are feeling it. So much so that the other day, I cried quietly in the kitchen while I peeled potatoes, because it was agony but I wanted to try and get at least one healthy meal into my family’s bellies that week, and I felt guilty because I knew that if I wasn’t writing so much, I could have done the potato peeling. Potato peeling always hurts a little, because my wrist doesn’t have the mobility or strength that it once did, but it doesn’t make me cry unless I’ve overused my wrists in other ways…like writing.
And truthfully, I feel guilty that writing has taken away so many “spoons”, but I’m determined to chase my dream, and I’m really loving writing this book. Creativity comes in waves, and I need to ride out the one I’m on as long as I can…I need to finish this book, and continue breathing life into my dreams because dreams sustain us.
With the influx in my daily word count, I’m still trying to manage the household and the kids’ schedules. My son has a project due next week, and we’ve been working steadily on it for the last five days. He works best if he has someone there helping him stay motivated and focused on the task at hand, and I still have to occupy my youngest. Splitting myself into two places at once hasn’t been easy, and to say I’ve been frazzled lately is an understatement. Each day that passes, a little more slips through my fingers and the bucket of guilt I’m carrying multiples.
I volunteered on a class trip to the zoo yesterday with my second grader. I tried not to think too hard about what it would entail (like lots of walking and standing), and I did my best to focus on the good things. Like, I’m spending the day with my son, and I’m watching him learn and interact with his friends. And really, that part was awesome–it was the other part that was hard. The walking around part, the standing part. The hills and uneven terrain. There were over thirty stations to explore, and I struggled after four. There was some seating available, but what little time I spent resting was swallowed up by standing up and walking again.
I felt every step in my feet, my ankles, my hips and my back, and walking up the hill to get back was probably the absolute worst. Steep inclines are so challenging for me to navigate. I have to walk sideways, because my ankles don’t bend that way. My body strains itself in hundreds of other ways to compensate my inability to move that way, and my hips and spine bear the brunt of it.
The pain was so bad, that I passed out just after I put the kids to bed…at nine o’clock. I’d wanted to get in at least an hour of writing, but I slept until midnight. When I woke up, I went downstairs to get a drink, pop a Nabilone tablet and turn off all the lights before returning to bed.
I woke up at 6am, stiffer than a piece of driftwood. It took me forty-five minutes to get out of bed, only to use the washroom and return. I laid in bed for another forty-five minutes before I was finally able to drag myself up.
Residual pain from yesterday with the accompanying stiffness made for a slow morning, and my patience really wasn’t there either. On days like today, keeping myself upright requires the majority of my focus, and added stresses just suck.
I also had to take my youngest in for an x-ray today, which went about as well as I expected it to. When we got into the room, he kept running away and crying, and eventually the technician told me I should take him to the hospital as they’ll have more staff on hand to deal with him. It broke my heart, and yes–it was frustrating. He’s been complaining of his elbow hurting for a few days, and it’s swollen. We think we can feel an MHE bone growth, but we wanted the x-ray to see for certain. The results would have been forwarded to his specialist, and he could have told us whether or not we needed to be seen sooner than our August appointment. Taking him to a local hospital means double the wait time, and we all know how well little kids handle wait times.
It’s just been…a lot. The demands of parenting, parenting with a chronic pain disorder, worrying about kids who have the same condition, not to mention the chronic pain issues themselves, and the work demands and the daily grind itself all piled together weigh a lot.
Most days, I am very appreciative of my life. I truly am. I know that I’m blessed, I have a beautiful, loving family and an incredible job. Things could be a lot worse, and in the grand scheme of things my problems are not all that big.
But sometimes, they feel heavy. Sometimes, I need to acknowledge that it’s heavy. It’s akin to setting down the heavy load I’m carrying for a brief moment of respite before I pick it back up again and trudge on…because I will trudge on.
I just need to have my moment of acknowledgement first.