Sooo happy to be sitting down and blogging it out today I’ve missed it! I make a really concerted effort to be consistent with a weekly post, both for my own self satisfaction and to stay accountable to you guys. But…it has been a struggle the past few weeks to find a window of time with enough brain power and low pain to actually put a coherent piece of writing together.
This is pretty common when living with lyme disease and chronic migraine though. There are only so many plates I can keep spinning in the air at one time (similar to the spoon theory). The option to throw a few more plates in the mix and push through just doesn’t exist — and I know, that if I add another plate to the ones already spinning, I can be certain that one (or more) of the other plates will drop.
Living with chronic illness and playing even the day to day “keep the plates spinning” game requires all of my mental and physical energy. I might have a day where I physically feel okay and have time to sit down and blog, but if my week has had additional stimuli, there is simply no brainpower left to actually get my thoughts from my brain into written form.
I could feel plates dropping like crazy from my delicate spinning routine two weeks ago as I tried to keep up with the Migraine World Summit interviews. Listening to between 2-4 lectures a day was incredibly informative and I really enjoyed it, but as a result, I had absolutely zero extra brainpower for thinking, writing or even carrying on a conversation, on many of those days.
I so badly wanted to take organized notes each day, but the mental energy required to just absorb the lectures left my brain feeling like it was moving through thick mud, completely unable to synthesize information. It was beyond frustrating to lack the mental capacity to scrap together an organized summary as I’ve done in previous years and accept that I’d hit my limit just by listening. Last year, taking notes wasn’t nearly as difficult for me, and this year shined an inescapable light on how much my symptoms and brain fog have increased and how much they have invaded so many areas of my life.
To keep the “summit plate” spinning, I had to accept not being able to take notes and summarize the information in the way I wanted to — and I had to drop many other plates just to keep listening along; including the “respond to emails plate”, “write a blog post plate”, “stay on top of my insta messages plate” and “meal plan/order groceries plate” (among many others).
Having to completely drop these tasks from my to do list in order to take on a new one created a ripple effect into other areas of my life and led to situations that made me feel awkward and uncomfortable. For instance, I feel guilty and don’t quite know how to explain myself when an email goes unanswered for over a week. I am hard on myself for not being organized about my health and staying on top of the IV therapy plan my doctor has set forth. I feel shame when I haven’t had the energy to check in with the people I love. The list goes on and on.
The next week, both my little brother and oldest friend visited me in New Orleans. Even though these are two of the most understanding people in my life when it comes to my health challenges, the extra interaction and stimuli from having them around required me to once again drop some serious plates — bye again “blog plate”, “return phone calls plate”, “laundry plate”, “journal plate”, “refill prescriptions plate”, “answer emails plate” and even just “reply to texts plate”.
The cumulative effects of a few weeks of spinning plates out of my normal routine leaves me feeling completely disorganized and exhausted, and takes a few weeks (if I’m being totally honest…sometimes months…) to recover from. I carefully try to pick up my usual plates and get them spinning and twirling in harmony-ish again, but it takes a lot of time and even more self-compassion.
I’m at a point in my life and health where it requires every ounce of my physical and mental energy to keep basic “taking care of myself” plates in the air consistently. Staying on top of doctors’ appointments, dietary restrictions, regular bloodwork, treatment protocols, my mental health and my most treasured relationships is a full time job. Some weeks, some of these plates drop because of physical symptoms. Other weeks, they fall because I’m out of my “normal” routine. It’s a constant game of catch up, with a to-do list of tasks that most people don’t think twice about accomplishing.
Trying to spin plates that are outside of my typical “act” is incredibly draining, even when the added activity or task involves something or someone I love. My heart hurt as I watched my boyfriend shuttle my brother and friend to and from the airport — while I lay in bed with an ice pack — trying to wrap my head around the fact he actually had enough energy to drive them back and forth (in addition to his normal routine and the added responsibility of having guests stay with us). He so very sweetly said each time, “babe, really, it’s not a big deal at all”. But to me…it was a big deal; both because I’m grateful for his help, but also because right now it’s just not an option to do something like that myself.
Spinning additional plates usually lands me pushing myself to a point of exhaustion where there is simply no other choice but to stop.
It’s like my gas tank hits empty and the only option is to sit there, broken down, and wait for more gas. When a car runs out of gas, someone else can go to the nearest station to get more fuel, but if I am the car in this metaphor — when the gas runs out, I’m done. Until my own body is able to generate a bit more fuel on its own. Sometimes, this can take a few hours of resting, then I’ll have enough to run on a low tank for an hour or so. Other times, I require a full night of sleep in order to feel as if I have anything back in the tank. Often, in those situations, I can still find myself the next day, trying to function on a low tank or running on fumes until I hit empty again.
So for all of my fellow plate spinners, or for anyone reading this who loves someone with chronic illness, show yourself or your loved ones compassion when the plates fall and when new ones are thrown into the mix. It’s not a choice to let things slip, but instead, it is one of the harsh realities of living with chronic illness and debilitating fatigue. For me, when I can truly acknowledge this, and accept that I am doing the best I can, I am able to let go of some of the heavy guilt that each crashing plate can create.
I share each step along my road to wellness and healing and hope that in doing so I can inspire you along your own path. Thank you so much for being here.