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.

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

For a long time, I thought the hardest part of parenting was learning how to respond in the moment. What I did not expect was how difficult it would be to understand what I was even responding to.

I watched my child repeat movements, phrases, rituals. I watched behaviours ramp up when they were overwhelmed, tired, excited, or under pressure. I watched them disappear into patterns that looked comforting one day and distressing the next. And I kept asking myself the same question, quietly and then out loud.

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.

Being ill and having stays in hospitals is expensive. That is probably the clearest lesson the last couple of years have taught me. Not in an abstract, policy discussion kind of way. Not in a what if this happened sense. But in a lived, counted, receipts in my bag, fuel gauge blinking, body already exhausted kind of way.

I have lived with ME CFS for long enough to understand that illness already costs more than people realise. Appointments. Prescriptions. Travel. The quiet extras you never plan for. But hospital stays are a different level of expensive. They come with urgency. With fear. With decisions made quickly, while you are already stretched thin. And when several of those stays happen close together, the financial impact does not politely wait for you to recover.

It started with my younger son.

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.

When the passport finally arrived, I remember holding it in my hands and feeling something close to relief. Not excitement exactly. Relief mixed with exhaustion. If you have ever applied for a passport for a child under a Special Guardianship Order, you will understand why. It is not a simple tick box exercise. It is paperwork layered on top of court orders, parental responsibility, consent, uncertainty, and the constant fear of getting something wrong.

For a brief moment, I thought we were done. Passport sorted. Box ticked. Job finished.

But the truth is, the passport is only the beginning.

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’m watching Netflix, half watching, half thinking, which is usually how these things go. I put the Eddie Murphy documentary on because I love a good documentary. Eddie Murphy was a big deal in my house when I was growing up. My dad loved him. Not just liked him, loved him. His humour, his energy, the way he filled a room even through a screen. Some of my earliest memories are of my dad laughing at Eddie Murphy movies, properly laughing, the kind that makes you forget everything else for a moment.

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.

There are things I want my child to know about friendship that I wish someone had told me clearly, without sugar coating, especially because the world is not always kind to people who experience it differently.

Not everyone is going to like you. That is not a failure. It is not something you need to fix. Some people will not understand you, your communication style, your boundaries, or how you move through the world. That does not make you too much or not enough. It just means you are not for them.

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,

Let’s get rid of two dangerous myths that harm children far more than they help: the idea that love alone can erase trauma, and the belief that because a child is young, they will naturally grow out of it or are too young to remember. Neither of these is true. They are trauma myths adults tell themselves to feel hopeful and reassured, but they are not rooted in reality. In our case, these beliefs were reinforced by professionals, resulting in systemic gaslighting. I know this because I once believed them myself,

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.

That sentence took me years to understand, and even longer to believe. At first, it sounded like something people say to soften the blow, a well-meaning cliche designed to make parents feel better when they are standing in the wreckage of yet another emotional explosion. But it is not a cliche. It is not a consolation prize. It is a truth, and a heavy one.

When your child has a meltdown at home, when they scream or sob or push every button they know you have, it feels personal. It feels deliberate.

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.