My journey with Myalgic Encephalomyelitis (ME) is one that I could never have anticipated, and yet it has shaped my life in ways I am still trying to comprehend. It has been four years since I received the diagnosis, which, in the grand scheme of things, is not that long. But to me, it feels like a lifetime. A lifetime of limitations, of losses, of learning to navigate a world that no longer fits the way it once did.

Of all the chronic illnesses I have been diagnosed with, ME is the one I would get rid of in a heartbeat. It is cruel beyond belief. It strips away the ability to live life in any predictable or reliable way. There is no cure, no universally effective treatment – only management, and even that feels like a fragile balance. Some days, I can do more. Other days, even sitting up is too much. The unpredictability of it is one of the hardest things to live with. 

There have been times over the last four years where I have been completely bed-bound, unable to do anything but lie in the dark, too exhausted and in too much pain to even sit up. Those periods were terrifying, but I always held onto hope that I would find my way back to a more functional state. And, at times, it did. There were moments when I could leave my flat for short trips, where I felt like I was reclaiming slivers of my old life. But now, since sepsis, those moments are fewer and farther between.

I can now only leave my flat for essential appointments, the ones that must be attended in person. Anything that can be done from home, I do remotely. My world has shrunk in ways I never thought possible. I require a wheelchair to mobilise outside because my legs are too unstable to carry me for any meaningful distance. Inside my flat, I often rely on a walking stick to move between rooms. Even then, most of my day is spent in bed, waiting for the couple of ‘functional’ hours I am granted each day. Those brief windows of time where I feel somewhat capable of doing small tasks, of engaging with the world beyond my bed. 

One of the most distinct and cruel markers of ME is the way your body punishes you for overstepping its limits. When I push too hard, even slightly, I pay for it. The flares are brutal, and the warning signs are unmistakeable. When I have overdone it – whether that means sitting up too long, engaging in too much conversation, or even just focusing too hard on something – I feel it almost immediately. My legs burn as if they are on fire, a sensation so intense that it is impossible to ignore. It is my body’s way of screaming at me that I have no rested enough, that I have ignored its pleas for stillness.

The thing about ME is that it is not just about fatigue. That word does not do justice to the bone-deep exhaustion that no amount of sleep can fix. It is like being weighed down by an invisible force, making every movement feel like wading through cement. It is pain that radiates through my muscles and joints, an unrelenting ache that never truly disappears. It is cognitive dysfunction – brain fog so thick that I forget simple words mid-sentence, struggling to focus, and sometimes feel as though my mind has simply stopped working altogether. It is sensory overload, where lights are too bright, sounds are too loud, and even the touch of fabric on my skin can feel unbearable.

Since sepsis, my body has become even more fragile. I used to have at least a little energy to ration throughout the day, but now, every action comes with a cost. The simplest tasks – brushing my teeth, getting dressed, making a cup of tea – feel monumental. I have to think about every movement, weigh whether it is worth the energy expenditure, knowing that if I push too far, I could be bedridden for days. My life has become a delicate balancing act between doing too much and not doing enough.

Sleep offers no relief. No matter how many hours I spend resting, I wake up just as drained as before. And even on nights where exhaustion consumes me, sleep doesn’t always come easily. The pain, the discomfort, the sheer weight of my body’s brokenness keeps me tossing and turning, desperate for rest that never truly arrives. When I do sleep, I wake up feeling like I have run a marathon in my dreams, my muscles aching as if I had been fighting through the night. 

The isolation that comes with ME is another layer of cruelty. I have lost the ability to maintain relationships the way I once could. I miss out on gatherings, on conversations, on simply being able to exist in the world in a way that feels normal. Friends and family understand to an extent, but unless someone has lived through it, they can never fully understand. My dad was actually diagnosed with ME when I was a baby and, though he doesn’t struggle any more, it means that my family have a very good understanding of my day-to-day life.

I miss spontaneity. I miss being able to say yes to things without immediately calculating the toll it will take on my body. I do not know what the future holds for me in terms of ME. It is scary waking up each day, not knowing how the day will go, what your body will cope with. And it is terrifying when you experience a decline – is this what is going to tip your body over the edge? Is it just a temporary flare, something that’s going to stick around for a long time, or, god-forbid, be permanent? 

What I do know is that, since sepsis, things have been worse than ever before. I have lost more than I ever thought I could, and I am still trying to come to terms with that. But I have also learned resilience in a way that few people understand. I have learned to exist within my limitations, to navigate a life that looks nothing like the one I imagined. And, most of all, I have learned that survival is not just about living – it is about adapting, about finding ways to exist within the cracks of what was lost, about holding onto hope even when it feels like everything is slipping away. 

My next post is going to talk about what people with ME want you to know, as well as exploring some of the ways other people with the condition describe it to others.

Until then,

All my love,

Anna x