There is anger, disappointment and frustration that comes with finally getting a medical appointment and then walking out realising you forgot to say half of what you meant to.

If you live with a chronic illness, you will probably recognise this feeling. You wait weeks, sometimes months, for an appointment with a doctor, surgeon, or consultant.

Living with chronic illness means medical appointments quietly become markers in time. Weeks or months pass waiting for them, and then suddenly you are sitting in a consultation room trying to summarise a complicated body in a few short sentences.

I recently had another appointment with the TMJ surgeon who will be treating my jaw problems.

I never sat down and wrote an official bucket list. I was not someone who pinned grand ambitions to a corkboard or talked about ticking things off before a certain age. But like most people, I carried a quiet list in my head. A collection of assumptions really. Things I thought I would do later. Things that felt inevitable rather than urgent.

Buying walking crutches has been one of the best decisions I have made during my chronic illness journey. I have been using them for well over a year or two now, and that still feels strange to write. For a long time, I told myself I did not need them. I told myself I was not there yet. I told myself they would be an inconvenience. I convinced myself that using crutches would mean I had somehow failed at coping with my illness. Looking back, I can see how wrong I was on every single count.

There is a very particular kind of quiet that comes with a flare day.

It is not peaceful. It is not restorative. It is the quiet of a body that has shut you down without warning. The quiet of plans cancelled, messages unanswered, the world continuing without you while you lie still and try not to make things worse.

Living with ME CFS has changed how I understand hobbies completely. Before illness, hobbies were about improvement, productivity, growth.

I refuse to call it CFS. From my perspective, ME is not just chronic fatigue syndrome. It is so much more than that. The renaming of ME to CFS in the 1980s, while perhaps intended to make the illness more accessible to doctors or the public, inadvertently caused stigma. Chronic fatigue, as a term, trivialises the reality of this disease. Anyone can feel fatigued after a busy week, a sleepless night, or an intense workout. But ME is not that kind of tired. It is a full-body, mind-and-spirit exhaustion that goes beyond what words like fatigue or tiredness can convey.

For a long time I believed this question had only one honest answer, and it was no. Not because I was dramatic or negative, but because my understanding of a good quality life was built on a body that worked, energy I could rely on, and a future that felt open rather than conditional. When you live with ME CFS, fibromyalgia and other chronic illnesses, those reference points quietly collapse. Not all at once. More like erosion. You keep expecting and hoping the old shape of life to reappear, and it never quite does.

Flare-ups are not neat. They do not announce themselves politely or follow a predictable pattern. They arrive quietly or suddenly, and once they are here, everything else has to move aside. Living with ME CFS has taught me that flare-ups are not something to push through or power past. They are something to meet where I am, even when I do not like where that is.

Over time, I have learned that how I handle flare-ups can make the difference between a shorter crash and a much deeper one. None of this is about curing anything or fixing my body.

Nicole Pedra’s video popped up on my Facebook feed the other day. One of those moments where you stop scrolling without even realising you’ve stopped. I watched it once, then again, nodding along. It felt like my body was responding before my brain had time to catch up. I followed her straight away.

It was titled Things Chronically Ill People Do Just To Function, and honestly,

I never planned to become someone who could explain ME CFS in detail. Like most people, I assumed chronic fatigue was just being tired all the time. I thought rest fixed things. I thought pushing through was the answer. I thought doctors would have clear solutions.

ME CFS taught me very quickly that none of that is true.

Trying to watch a scary, violent, gory film when you are an empath is its own strange experience. On the surface, it sounds simple. You either like horror or you do not. You either press play or you do not. But for me, it is never that straightforward. I want the story. I want the meaning. I want to understand the characters and the psychology and the why behind it all. What I do not want is the intense physical reaction that hijacks my body the moment things turn dark.

Pre-Chronic Illness, I used to look at people with chronic illness and feel a deep sense of admiration. I thought they were brave in a way I could never be. Strong in a way I did not possess. I would say things like there is no way I could ever survive being chronically ill. I hate taking paracetamol. Imagine needing pain medication every single day. I would fall apart.

Living with chronic illness in the UK is not something you ever plan for. It slowly becomes part of your identity, your routine, and your relationship with the world around you. One day you are managing life as you know it, and the next you are learning new words, new limitations, and a new way of existing inside a body that no longer works the way it used to. When chronic pain is involved, that adjustment becomes even more complex, more isolating, and often more invisible to everyone else.

As a chronic ill person living with chronic pain, my approach to self-care is significantly different from that of someone without a chronic illness. While self-care is important for everyone, those of us managing conditions like ME/CFS, fibromyalgia, spinal stenosis, or other chronic pain disorders have unique challenges and considerations that shape how we care for ourselves each day.

Living with ME/CFS and Fibromyalgia has completely changed how I experience everyday life. Things that once felt neutral now come with consequences, and cleaning is one of the clearest examples of that. Cleaning is often framed as a basic life task, something routine and unremarkable. For me,

When ME CFS was first mentioned to me, it wasn’t even in a dramatic or definitive way. It was more of a quiet suggestion, almost a passing comment, like something to tuck away for later. At the time I didn’t really know what it meant. I knew the words, but I didn’t understand the weight they carried. I went away and did what I always do when something doesn’t sit right in my head. I researched. I read.