No Apologies
I have been thinking a lot about how I often compare my life to a roller coaster ride - riding the ups and downs of what any day will bring. Except this week it struck me that there is no end to the ride. Chronic by definition means "persisting for a long time" or "constantly recurring." It feels weird not to have a final destination. Yes, I realize the obvious, I am trying to get to better health- maybe one day a cure though I don't think that is how chronic diseases work. Cures are hard to come by so yes balancing as much as I can is the goal. But am I ever going to be done having to work on my healing?
This week I have been mad at myself. I am supposed to be adding new vitamins and foods and I have been paralyzed. I am a doer by nature- if there is a problem I want to fix it but right now I feel stuck unable to propel myself forward. I am tired of "doing." I spent months of this Fall and the entire month of December doing things and the momentum of finding answers for my acute problem- fixing it - and fighting to not miss my in-patient opportunity for an iron infusion trial carried me through those weeks. But now as I am healing- as my body is recovering from the months of inflammation and years of anemia I have come to a screeching halt.
I wish I understood why taking a break and just living and being in life -without the stress of adding medicine and food, feels so wrong. It feels like everyday I do not do something I am leaving myself vulnerable to going backwards and spiraling out of control. But when is a good day to react? How do I pick a day I want potentially ruined by doing a trial? It can't be the day of a big meeting and it can't be when we have a blizzard without safe access to an emergency room if I need it, and why would I ruin a weekend day when I finally have a moment to catch my breath? Except then each day I do nothing I feel guilty as if taking a break from working on my health is letting not just myself down but everyone around me who depends and relies on me to be in their life- my husband, my son, my family and friends.
I have shared my inability to get myself to do my next trial to my practitioners as I have met with each of them in the last two weeks and all have reminded me that sometimes it is OK to just be. Sometimes, part of the process is in fact taking some time to just live and let your body re-calibrate and heal. One of my practitioners reminded me. “this was not a race because there was no finish line, this was my life and I had to find the right speed at which I go. And there will be months like December where the leaps and bounds I make towards healing are huge and there may be others where just being as I am is enough.”
Even though I logically understand her words I still am working on shaking my feelings of the disappointment I have in myself as I try to remember that even the pauses are a part of my healing process. And I realize that if I have to spend the rest of my life living with my diseases that these breaks in medical activity are essential. Taking time after a particularly challenging few months to catch my breath and enjoy the life I fight so hard to have will only mean I am that much stronger when it is time to begin my battle again. Even rare disease warriors need a break. So for now, I have hit pause until it feels right to begin again and I do not have to apologize to anyone for doing so, even and especially to myself.
