Flare-Ups, Fatigue, and Feeling Forgotten: My Life with Chronic Illness
When I have a flare-up or a relapse, it wipes me out completely. There’s no easing into it, no gentle warning, just a sudden, overwhelming wave that crashes over me and drags me under. In those moments, I’m pretty much housebound and bed-bound. Even staying awake feels like a battle I barely have the strength to fight.
The worst part is the way I lose myself. It’s not just physical exhaustion; it’s a loss of my sense of time and identity. Hours, or sometimes entire days, disappear, swallowed by the fog of pain and fatigue. It’s heartbreaking. You don’t just feel bad; you feel like you’re fading away. Like you’re this empty vessel, hollowed out and isolated, while everything else around you moves on without you.
The pain is raw and immense, and at its core, it becomes everything. In those bleak hours, all I can focus on is managing the pain just enough to survive. But the pain never truly leaves. It shrouds me, clinging to every fibre of my being. My body constantly reminds me of it, in every twitch, every deep breath, every slight movement that feels like a monumental effort. Strangely, the pain, you might think it would at least distract me or give me something to think about, but no, it consumes all thought until there is nothing but pain.
Watching TV, which used to be one of my simple pleasures, is impossible. My eyes won’t stay open, even if I try so hard to focus. The fatigue is crushing, crippling in its intensity. I spend nights feeling utterly helpless, knowing sleep will offer little relief and only come in short, restless bursts if at all. Just keeping my eyes open is a painful endeavor; eating feels like a chore I cannot face; even smiling or having a conversation is beyond my capability.
In truth, during these flare-ups, I don’t just feel ill, I feel broken. It’s like I’m trapped in an empty void, a silent space where my body is failing me while the world outside remains busy and bustling. Everyone else seems to be moving forward, living life, while I lie there, encased in this relentless pain, immobilised. It’s a surreal kind of paralysis, not just physical but emotional.
I am aware of how isolating this reality is. It’s an invisible battle most people don’t see or understand. I want to convey what it’s like to live in that zone because it’s not just pain or fatigue, it’s the loss of connection to everything I love and the person I want to be.
What helps during these times? Honestly, it’s hard to say. Sometimes it’s the small, quiet moments, when a friend’s text comes through even if I’m too tired to respond. Sometimes it’s the mindfulness practices I’ve picked up through yoga, guiding me to breathe through the pain without letting it engulf me entirely. And sometimes, it’s just surrendering, accepting that this moment is what it is and trusting that it will pass, even if it feels impossible.
If you’re reading this and you struggle through flare-ups, you’re not alone. And if you’re supporting someone with chronic illness, your patience and understanding mean the world. Flare-ups feel like a complete erasure of who we are, but beneath the pain, we’re still here, still fighting, even when we feel like we’re barely holding on.
Living with chronic pain and fatigue is an ongoing journey through darkness, but sharing our stories brings light, even if just a little. So here I am, telling you about those empty, painful days so that you might understand a little better what it feels like to be caught in that lonely, aching space. And maybe, just maybe, that gives us all a bit more compassion to hold onto.
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.
