I’m switching things up for this week’s blog! Due to recent travel and a flare from sleep deprivation, my original plan had to take a backseat. Instead, I’m sharing a reflection I wrote for Medium about a particularly tough flare I went through a few years ago. I’d love to hear your thoughts in the comments!
Anyone living with fibromyalgia (or any chronic illness for that matter) will likely have a visceral reaction when they hear the word flare. We spend our days trying to avoid triggering our bodies into one, or nurturing our bodies to exit one. At times it can feel like a vicious and never-ending cycle.
I spent most of 2020 and 2021 in a constant state of flares. Intense musculoskeletal pain, burning skin pain, fatigue, thick brain fog, gastrointestinal issues, inflammation, and even a bout of shingles. Of course with the chronic pain came exacerbated mental health struggles. I felt like I was on a ride I didn’t want to be on and couldn’t get off.
Nowadays my symptoms are more manageable, and my flares are less frequent, less intense and shorter. I still have my difficult days, and while some flares appear seemingly unprovoked, the majority are due to a known cause and effect. I know my triggers. I can pretty much guarantee that if I go to bed after 2 am, drink alcohol, don't effectively pace/manage energy or experience emotional distress, I’m going to flare.
Despite living with fibromyalgia for many years, there is one particular flare that stands out. The intensity and speed at which it developed have stayed with me as the worst flare I’ve ever experienced. It serves as a reminder of how challenging and disabling fibromyalgia can be.
In February 2020, my previous business partner and I landed in Bogotá, Colombia for some meetings. Flights can be exhausting for me, and landing in a city with an altitude of 8,660 feet (2,640 meters) doesn’t help matters. As an aside, even pre-fibromyalgia I’ve always struggled with high altitude. While it typically takes people a day or two to adjust, I’ve spent weeks in high-altitude cities and my body never got used to it. Given this backstory, it would have made sense to have taken it easy upon arrival. However, we had a packed few days of meetings so there would be no time to rest and acclimatize.
The morning after we arrived, and with little sleep, I started feeling the tell-tale signs of an impending flare. But early in my fibromyalgia journey, I didn’t give it much attention and pushed it aside to focus on work. Pacing and partnering with your body’s needs is something I work on with clients, but back then, I was definitely in denial. By the time I finished a mid-day presentation, I could barely stand. I must have been running on adrenaline because my body was completely spent.
My business partner helped me back to our Airbnb and into bed before heading out for our final meetings of the day. At this point, my body felt like it had completely gone haywire. The full-body pain intensified, and one of my main flare symptoms—a burning skin sensation due to nerve hypersensitivity—was unbearable. It felt like a laser beam was penetrating every layer of my body, from muscles and tendons to the bones. The pain was so intense, it felt like my bones were on fire. I was trapped in bed, unable to move or sleep.
Honestly, I prayed out loud for probably the first time since my Catholic school days, promising that if God could just reduce the pain, I would try my best to be a better person. I was convinced that the pain would never end, that I might be trapped and unable to move forever. I couldn’t understand how my body could suddenly self-destruct. The pain and symptoms felt as if they were the result of a severe injury, like a car accident, or the accumulation of a serious disease—neither of which was the case.
I was stuck in a sort of no-man’s land until my business partner returned to our Airbnb. She tried to find some pain relief, but nothing was effective at that level of pain. I spent the night distressed and unable to get comfortable. The next day, we had a flight, but thankfully, I had help getting dressed and carrying my luggage. As someone who often travels solo, this experience left me worried for a long time about managing a similar situation on my own.
After returning home, I was out of commission for nearly a week. I couldn’t eat, and even walking up a small flight of stairs made me dizzy. I developed a chest infection and eventually went to the hospital for IV fluids due to dehydration. The infection and coughing lasted about a month.
To this day, I’m unsure what caused the flare. Likely a mix of stress, travel, lack of sleep, and possibly the flu or even Covid, though none I was around fell ill.
We all know that despite our best efforts, many things in life are beyond our control. Nobody knows this sentiment better than those of us with chronic illness. Reflecting on that situation, the worst part wasn’t just the loss of control or the sense of disempowerment, though I experienced those feelings. What struck me most was a profound sense of betrayal. And like any betrayal, regaining trust is a difficult and lengthy process. Over and over again, during and since, I’ve wondered-
How could my body sabotage me like that?? What if it does that to me again??
Partnering with our bodies is key to healing and navigating unpleasant experiences. However, we often overlook the essential first step: forgiveness. Forgiving our bodies for trying to protect us, even though, in reality, they sometimes cause us suffering in the process. It took me years to realize that my resentment, anger, and shame toward myself were likely fueling more flares and perpetuating a vicious cycle.
Nowadays, I don’t take flares as personally. While they remain challenging and taxing both emotionally and physically, I see them as opportunities to give my body the care it needs. We often hold preconceived notions about our bodies' capabilities, shaped by an ableist society that promotes ‘no pain, no gain.’ Yet, those of us with chronic illness or disability know our bodies don’t work that way. And by the way, this can become true for anyone at any time.
I now recognize the early warning signs when something is off. Instead of feeling disappointed, I approach these moments with curiosity and compassion, asking what I need to adjust. This has included prioritizing rest before and after travel, planning to prevent and manage flares, and communicating my needs for help—something I used to struggle with. It’s a journey of learning to be kinder to myself.
As for my promise to God, there’s always room for improvement, but chronic illness has deepened my appreciation and sensitivity to the human experience. Looking back at photos from when I was struggling with a mental health episode or a severe flare, many wouldn’t have known the pain I was in. All the layers and dimensions of the human experience can’t be captured in a few curated photos on social media. Many people are suffering in one way or another and we have a collective responsibility to not inflict further harm, but ideally share kindness.
Reflecting on the past, I realize that part of why the flare felt so devastating was because it caught me off guard. Yet, it also served as crucial preparation. The toughest moments often arise unexpectedly, but they also equip us to handle future challenges, as I've learned through my ongoing journey with fibromyalgia. Life’s unplanned situations almost always come with valuable lessons.
And, as the saying goes, we’ve survived 100% of our worst days — perhaps, emerging a little more humbled and resilient in the process.
How do you handle situations where you know your body needs rest, but life demands action?
Originally published through Betterism at https://medium.com on August 19, 2024.
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