There is something about the bathroom that people do not talk about enough when it comes to chronic illness. It is one of the smallest rooms in the house, yet it can demand so much energy. Standing, bending, reaching, balancing, heat, steam, noise, bright lights.

I have had days where washing my hair has taken everything out of me. Days where I have sat on the floor because standing felt impossible.

There is a version of me that still exists in memory, the one who could pack a bag in twenty minutes, book something spontaneous, and just go. No planning around energy. No second guessing whether my body would cooperate. No quiet fear sitting in the background.

Living with ME CFS and fibromyalgia has changed that completely. Travel is no longer just about where I am going. It is about how much it will cost me physically, how long recovery will take, and whether the experience will be worth the inevitable crash that often follows.

Living with ME CFS and fibromyalgia has changed the way I speak to myself more than anything else in my life. Not in a motivational quote kind of way, but in a quiet, often fragile, very human way. When your body becomes unpredictable, when your energy disappears without warning, and when even simple tasks can feel like climbing a mountain, your internal dialogue can either become your harshest critic or your gentlest support.

For a long time, mine was not kind

March has been one of those months that has quietly crept up on me and then completely taken over. It has been filled with appointments, tests, referrals, follow ups, and more waiting than I ever feel prepared for. On paper, I have managed quite well. I have shown up. I have answered the questions. I have done what needed to be done.

But underneath that, something else has been building.

That familiar feeling of appointment fatigue.

There is a version of me that existed before chronic illness. I can still picture it clearly. I moved quickly, thought quickly, and parented in a way that felt instinctive and responsive. I was always doing, always planning, always showing up in the ways I believed a “good parent” should.

Then came ME CFS and fibromyalgia, and everything I thought I knew about parenting quietly unravelled.

Pacing is one of those things I had to learn slowly, and honestly, often the hard way.

When I was first told about pacing with ME CFS and fibromyalgia, it sounded simple enough. Rest before you overdo it. Stay within your limits. Avoid crashes.

But no one really explains what that actually looks like in real life.

Living with ME CFS and fibromyalgia has changed many parts of my life in massive ways, but the part I have worked hardest to protect is the relationship I have with my husband, my sons and my daughter. When your energy is limited, when pain flares up without warning, and when even simple daily tasks can feel overwhelming, it can be easy to slip into guilt

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,