Chronic Illness: Living Between the Boom and the Bust
I was recently watching a series of Fibromyalgia group session videos on YouTube, shared by my pain nurse through our local NHS hospital trust. One video in particular focused on the idea of boom and bust, that familiar cycle so many of us with MECFS/fibromyalgia live in. They talked about the mindset we often carry, the quiet determination that says, I’m not going to let MECFS/fibromyalgia beat me. That mindset rang painfully true for me. Because while the intention is strong, the reality is that over time it takes less and less for the bust to hit. The margin gets smaller, the cost gets higher, and the consequences last longer. Sitting with that realisation is what pushed me to write this post.
Boom and Bust
It sounds almost dramatic, like something that belongs in economics or history books, not in a body. Not in my body. And yet, this is the rhythm of my days, my weeks, my life.
The boom comes first. It always does. The moment where I feel just capable enough, just hopeful enough, just human enough to believe that maybe, just maybe, I can do a little more today. The boom is quiet sometimes. It’s not energy exactly; it’s more like permission. Permission to try. Permission to stand up. Permission to act like the person I used to be, or the person I imagine I still am somewhere under all of this.
And then comes the bust.
The bust is immediate and unforgiving. As soon as I bust, I am floored. There is no warning bell, no gentle tapering off. One moment I’m upright, doing something painfully ordinary, and the next my body has decided: that was too much. Stop now.
What makes it harder to explain, harder for others to understand, and sometimes harder for me to accept, is how little it takes for me to bust. I don’t need to run a marathon or clean the entire house. I don’t need to do anything impressive or strenuous. I can bust from walking up the stairs. From having a bath. From filling the washing machine. These tiny, forgettable tasks that people do on autopilot are major undertakings for me. Each one carries a cost, and I almost always pay for it.
People take these things for granted. I used to, too. That’s part of the grief, I think, the way my current reality constantly bumps up against my memories of who I was before. Before I had to measure my life in spoons and minutes and recovery time. Before “getting dressed” didn’t feel like an achievement worthy of applause.
I try to help. I really do. That part of me hasn’t disappeared, the part that wants to contribute, to be useful, to feel like I’m pulling my weight in my own life. So I do little things when I can. I fold a bit of laundry. I rinse a dish. I attempt something that looks, from the outside, entirely reasonable.
And then I bust.
The bust doesn’t just mean I’m tired. It means I’m done. It means I’m back in bed, sometimes for days, my body heavy and unresponsive, my mind foggy and frustrated. It means pain flares, exhaustion deepens, and the world shrinks to the four walls of my bedroom again. It means plans are cancelled, progress is undone, and that small sense of victory I felt during the boom evaporates.
Boom and bust. Over and over.
There is pacing, of course. Everyone talks about pacing like it’s the solution, the magic key. And yes, I try. I really do. I plan. I rest. I break things into smaller pieces than seem humanly necessary. I stop before I want to. I sit when I want to stand. I lie down when I want to keep going.
But pacing is hard when the line between “manageable” and “too much” is so thin. When just trying to be normal, just trying to do normal things, pushes me straight into a bust. I often find that I am pushing myself too hard, not because I’m being reckless, but because I’m being hopeful. Because I want so badly to participate in my own life.
Trying to be normal booms me. And the boom always leads to the bust.
I am lucky, though. I don’t say that lightly, and I don’t say it to minimise how hard this is. I am lucky because I have my husband, steady and patient, carrying more than his fair share without complaint. I am lucky because I have my older kids, who take care, attention, and time to help me in ways no child should have to, but do, out of love. They see me. They help me. They step in when I can’t.
That love keeps me afloat on the hardest days. It also complicates things. Because being cared for so deeply brings its own ache. Gratitude and guilt can live side by side, tangled and inseparable. I am thankful beyond words, and I am painfully aware of what this illness has taken not just from me, but from them.
Boom and bust isn’t just physical. It’s emotional. It’s the hope of the boom and the heartbreak of the bust. It’s the constant recalibration of expectations. It’s learning, again and again, that my limits are real, even when I don’t want them to be.
Some days, acceptance feels possible. Other days, it feels like surrender, and I’m not ready for that. I still want to try. I still want to help. I still want to believe that tomorrow’s boom might last just a little longer.
But for now, this is where I am. Living in the space between boom and bust. Learning, slowly, imperfectly, that my new normal sometimes looks like rest, that effort isn’t always visible, and that doing “nothing” can actually mean doing everything my body needs.
I am not lazy. I am not weak. I am not failing.
I am pacing a life that refuses to be rushed.
About me
I am a married mother of four children. One of those four children is our granddaughter, for whom we are SGO (legal guardians)/kinship carers. I run a small business and enjoy writing, so I blog. My blog focuses on my family life as well as my experiences of living with chronic illnesses and disabilities such as ME/CFS, spinal stenosis, chronic pain, and fibromyalgia. Oh, and I am only in my mid-40s.
