I consider myself a fairly responsible person. I juggle tasks reasonably and have been a passably acceptable multitasker. However, when routines and unexpected moments burst open like a popped bubble, all bets are off. In fact, in just one such occasion, I almost caught my house on fire.
I have a chronic illness that will never, ever go away. I have fibromyalgia, which means that I hurt all the time, but some days are better than others. Some days I’m so exhausted that I can hardly function; other days I feel energized and like my old self with this distant pain that’s off in the distance. Regardless of how I’m feeling, I’m the best darn advocate for myself because no one else is going to advocate as well for my needs as I will. Yeah, today’s post is about dressing up and speaking up.
When our lives change, even for the better, our stress increases. When you have fibromyalgia, that usually means your pain and your fatigue change… and not for the better. As I wrote about earlier, I’m facing some a proverbial barrel of the gun in terms of changes: I’ve been promoted, and I’m starting a graduate school program. Yeah, I think I’m crazy too.
I have fibromyalgia. Some of my days are good days, and I feel as strong as I ever was, stronger even, in some ways. I can climb all the metaphorical and literal mountains that I used to climb. Other days, I feel so fatigued, it’s as if the weight of all my former aspirations and dreams and losses have manifested into 10-pound weights that are hanging all over my body. I fantasize about lying down on the floor and resting. I never know which day I am going to have, but I have more good days than I used to have.
I was standing near the hall, turned back to face my husband. I don’t remember what we were talking about, but I was teasing him about something. I remember briefly thinking—as I often do—that he was a handsome man and I was lucky he was my husband. Then I felt as if I had a net thrown over my body and my senses. The world went fuzzy and dark, and I couldn’t stand. My legs lost muscle tension. I half fell and half sat with very little grace on the floor. It’s not the first time I’ve partially fainted, and it’s not at all romantic. Moments earlier, I had stood and walked across the room, and my body sometimes cannot handle the blood pressure changes between sitting and standing.
When my friend asked me if I would be her bridesmaid, I wanted, wanted, wanted to say yes. I wanted to scream yes! I wanted to dance around in the street shouting, “she’s getting married!” because I was that stupidly happy for my friend. She deserves much happiness and much success, so the making-it-official day was definitely something I wanted to help her celebrate. Marriage is about more than the wedding, the ups and downs of a relationship, but the wedding ceremony itself is a time to come together with the people closest to you and celebrate the commitment to those ups and downs with a big hoopla. Except, I have fibromyalgia and a gazillion medical bills, so I couldn’t let the “yes!” escape my lips without considerations. I had to ask questions first. I had to plan for success around my illness; I did not want to let my friend down. I am hopeful that my own preparations and decisions about managing my chronic illness may help someone else think about how to tackle participating in such a significant event in his or her life.
I woke up yesterday with a dull ache at my right temple. I could feel the migraine coming, and I would have taken my onset migraine medication right then except if I take my migraine medication at the same time as my fibromyalgia medication, I’m destined for a day on the couch or in bed. Yesterday was not supposed to be a day on the couch. I made my choice and waited to relieve the pain.