Living With Chronic Illness: A Painfully Slow Walk, and Why It Still Mattered
Today I woke up and noticed something small but important. I felt a little lighter. Not fixed, not suddenly well, just lighter enough that the walls of the house did not feel quite so close. I have been mostly house-bound over the past couple of weeks, living very much in a boom and bust phase; days blending into each other, measuring time by pain levels and energy crashes rather than clocks. This morning, there was a quiet pull inside me that said I needed to get out. Not to do anything impressive or productive, just to step outside and feel the air on my face.
We decided to take the dogs for a small walk (me, my hubby and daughter). Small being the keyword. I knew it would hurt. I knew I would be slow. Pain is not something I leave behind when I open the front door; it comes with me, settles into my hips, my legs, my spine. I grabbed my stick, took a breath, and reminded myself that slow is still moving. There is a strange kind of courage in choosing to do something that you know will hurt, simply because your mind and heart need it.
Every step felt intentional. I was painfully slow, moving more slowly than the world around me, more slowly than I wished I could. The dogs did not seem to mind. They matched my pace, pausing to sniff everything, fully immersed in the moment in a way I quietly envied. The walk itself was short. My daughter had gone ahead with one of the livelier dogs, looping around the path and passing us a few times. If someone else took these steps, they might not even think to call it a walk. For me, it was an effort, a careful negotiation with my body, silently asking it to just keep going a little longer.
What surprised me was how nice it felt once I was out there. I met other dog walkers and we exchanged smiles and friendly greetings. Nothing deep, nothing dramatic, just simple human moments. A nod. A hello. A shared understanding that we were all out there for similar reasons, our dogs pulling us into the fresh air whether we felt like it or not. Those small interactions mattered more than I expected. They reminded me that I am still part of the world even when I spend a lot of time indoors.
The sounds were gentle and grounding. I could hear squirrels and birds rummaging around in the leaves on the ground, busy with their own lives, unconcerned with my pain or my pace. There was something comforting about that. Life continuing quietly around me. The cold air felt sharp but clean, the kind of cold that wakes you up without being cruel. It was cold but calm, no biting wind, just stillness and soft winter light.
For a while, I forgot to compare myself to who I used to be. I was just there, moving slowly, breathing in cold air, listening to the dog's paws against the path. I let myself enjoy it without guilt. I did not tell myself I should be doing more or going further. I let the walk be exactly what it was.
Getting home was when reality caught up with me. The moment I stepped inside, the crushing fatigue hit hard. It is always like that, as if my body waits until I am safe before it collapses. The effort of the walk, small as it was, came back to collect its price. My muscles screamed, my joints burned, and the exhaustion settled over me like a heavy blanket soaked in water.
I shuffled up to bed, moving slowly and carefully, trying not to let frustration take over. This part is always hard. The after. The extra pain that arrives because I dared to do something normal. The fatigue that is not just tiredness but something deeper and heavier, something that feels like gravity has been turned up inside my body.
I do not like sleeping during the day. I avoid naps whenever I can because they affect my nighttime sleep, and night time is already unpredictable enough. I like the quiet of the evenings, the sense that the day is winding down naturally. Daytime sleep feels like stealing from the night, and often it comes with guilt layered on top of the exhaustion.
But sometimes the fatigue does not ask for permission. Sometimes it is so crushing that staying awake feels impossible. It is not a gentle drifting off. It feels more like being pulled under. Like my body decides for me that it has had enough and simply shuts down. I fight it at first, telling myself to just rest, to close my eyes without sleeping, but there are days when that is not enough.
Today was one of those days. I lay there, trying to ride out the wave of exhaustion and pain, reminding myself that this was the cost of getting outside. I do not regret the walk, even as my body protests. I needed that fresh air. I needed those smiles. I needed to hear leaves crunching under unseen feet and birds rustling above me.
Living like this means constantly balancing what my body can handle with what my mind needs to survive. Some days staying inside is the kindest option. Other days, even a painfully slow walk with a stick feels like medicine, even if the side effects are brutal. Today I chose the walk. I chose the cold air and the small moments of connection, knowing full well what would come after.
There is no neat lesson here, no tidy ending where everything feels better. There is just honesty. I got up. I went outside. I moved slowly and it hurt. I enjoyed it anyway. Then I came home and paid for it with crushing fatigue and more pain. This is the rhythm of my days right now. Hard and gentle tangled together, progress measured in moments rather than miles. And today, despite everything, I am glad I stepped out the door.
About me
About me
I am a married mother of four children. One of those children is our granddaughter, for whom we are legal guardians and kinship carers. I run a small business and I love to write, which is how this blog came to be. I write about family life, kinship care, and my experiences living with chronic illness and disability, including ME CFS, spinal stenosis, chronic pain, and fibromyalgia. I am also very aware that I am doing all of this in my mid-forties, which still surprises me some days.
