Compression gloves. An electric jar opener. Shampoo dispensers. They may appear to be small things, but to me, they're everything. (Thanks hubby!).
During a fit of frustration this weekend, I told my husband that I was tired. I was tired of answering questions about my health status with people who couldn't understand. And while I had said those words from an unhappy place at the time, there was some truth to them. It's really, really difficult explaining what it feels like to be forced into a menopausal state, to experience hot flashes and joint pain over a decade earlier than expected, to realize that everyday tasks like squeezing toothpaste out of a tube or shampoo from a bottle could hurt. To become exasperated at myself when my fingers would fail me, that I would drop things or take 15 minutes to tie a knot or struggle with high chair and carseat harnesses (that were impossible to begin with!) or find myself ugly crying in the kitchen when I could no longer open a jar. It's hard to verbalize that yes, I survived -- I finished chemo, then radiation, in a pandemic, no less -- but this survivorship thing? Boy, it's hard too, in a whole other way. On the outside, I look fine. My hair is growing back (although it's in this weird stage that I don't know what to do with), and we've been gradually re-entering the world and having somewhat of a social life. Technically, which is what I tell everyone when asked, I'm being managed by medication (an aromatase inhibitor) plus monthly injections at the infusion center (ovarian suppression) as adjuvant therapy, since I'm premenopausal. I read the literature and studied the side effects when my oncologist had first suggested it. He warned me about the joint pain and hot flashes, but I was still undergoing chemo at the time so honestly thought, "How could it be worse than it is now?"
I don't know if it's worse. I remember the bone pain that I had experienced with chemo, barely able to cradle my newborn, trying not to move at all out of fear of dropping him. Some days, I would camp out on the couch and just pray for the constant, gnawing pain to subside. Nowadays, it isn't the same type of pain -- it's consistent, but not unbearable -- and it's more like stiffness in my joints until I start moving. So in other words, it's just annoying enough but not something I would take OTC meds for. It's tolerable. The difference here, though, is that there truly is no relief in sight. And that is the hardest part. I feel like now, more than ever, I perhaps understand maybe an ounce of what it's like for anyone dealing with a chronic illness.
So I started to make some changes. A few months ago, I transitioned to more plant-based eating, switching two out of my three meals to be without meat. I walk when I can during lunch. The walking has helped my knees and hips, but I still wake up every morning with my fingers and hands in pain. Still manageable, but it sucks. It takes reminding myself, every day, that "I wish things could go back to the way before" is no longer an option. It's an understanding that from the day of my diagnosis, my life changed. Period.
In the end, I do want to talk about it. I do want people to ask, check in. I recognize it must be hard to understand, as with most anything else when you haven't experienced it firsthand, what it's like to feel crappy and push through it every single day. Is there a moral to this story? Be thankful for your health. Take care of your body. And thank God every day for husbands like mine, who sees me struggling and will do anything he can think of to help, who truly listens and supports me through all of the good AND all of the bad, and who never, ever lets me down.
And also? It's okay to not be okay. Check in with yourself too, and allow yourself some grace.
