My FND journey.

FND is isolating. It can steal your life if you let it. But there are people shouting so loudly that everyone can hear them — and because of them, the rest of us feel a little less invisible.

A huge thank you to @fnd_revolution on Instagram for constantly pushing the conversation forward. She shared the first edition of FND Today, a monthly magazine from Paul Edwards Publishing for patients, families and professionals.

The digital edition is free to download. Every person touched by it is one more person who can be heard and helped. That matters. Lived experience teaches us things no textbook can — it helps us relate to the vulnerabilities and complications people with FND live with every day.

You are not alone. And now there is a magazine to prove it.

Concussion behind me, bruises still colouring — and I looked in the mirror this morning and thought: no. FND does not get to decide who I am today. I do.

So I washed my hair, put on a lace cami, softened my eye with a warm bronze, brushed a glossy nude across my lip, and let the rest of me catch up. Small rituals. Big rebellion.

This is the face that stops men in their tracks — not because of the makeup, but because of the decision behind it. Be who you want to be, and can be. Even from inside a body that has been trying to write a different story all week.

Polished is not perfect. Polished is intentional.

Concussion. My ribs and elbow are bruised. I am still unsure of what happened this last weekend. The pain is excruciating, and I think that is what is so scary — when all you are left with is bruises and pain, but you don't know how you got there.

I just don't know where I fell, how I fell, how I fell. I am still sleeping like crazy. I rose from my deep sleep yesterday at 14h00. I still can't remember conversations. I know that I cried, but who with, I have no idea.

It's scary. When life is a blur, it scares me. I can't even tell you what happened before or after. The weekend has been erased, and my body is the only witness left.

FND turns the body into a crime scene with no suspect, no motive, and no memory of the crime.

I have been so sick. I woke up at 14:30 this afternoon. I have bruises everywhere, I knocked my head, and I can't remember anything. OMG it's so scary.

The day is half over before I even arrive in it. My body looks like a map of places I don't remember hitting. And my head — the one thing I need to think, to write, to make sense of any of this — feels like it belongs to someone else.

This is the part I hate most: not the pain, not the bruises, but the blank. The not-knowing. The fear that pieces of my life are being erased while I'm still inside them.

FND doesn't only steal movement. Sometimes it steals the afternoon, the memory, the certainty that you are still the one holding the pen.

I fell. Knocked my head, bruised my ribs and practically cracked my elbow. Yesterday is a complete blur. In fact, not so much of a blur as opposed to completely dead to me. I remember NOTHING.

I've watched The Devil Wears Prada 2 — this is the third time. Dear God, will I remember any of it? I'm frustrated, I'm scared, I feel helpless and hopeless.

I bought a quilt today. It's beautiful. I love it. That's about it. I have nothing else to say. I'm scared. I'm truly scared.

This is the part of FND nobody warns you about — the days that disappear, and the body that keeps finding new ways to fall.

This is me, just before I ended up in hospital in 2023. God help me — I am sick now, but back then I was beyond dead. The walking dead. My sweatpants wouldn't stay up. My body had quietly disappeared while I was still trying to live inside it.

I share this not for shock, but for honesty. So that anyone in this season of their own story knows they aren't alone, and that bodies — even bodies this tired — can begin to come back.

2023 and 2024 were horrendously bad. Central lines, oxygen, monitors, more admissions than I can count. There were days my body felt like it was closing the door — and nights I wasn't sure I'd see the morning.

I keep this photograph not to dwell, but to remember. To honour the version of me who held on through that. To anyone reading this from a hospital bed right now — please hold on. The chapter you are in is not the whole book.

And then — look how far I've come in less than a year.

My life took a turn for the better on 3 August 2025. I won't pretend I know exactly why that date held the key — only that something shifted. The right team, the right treatment, the right small daily choices, all finally pulling in the same direction. I am still healing. But I am here. And I am living.

I look at this photograph and I see a woman who had already lost so much weight her clothes were hanging on by willpower. The gold sequin top catches the light, but underneath it my body was being robbed — of nutrients, of strength, of the simple joy of eating.

Of all the FND and FND-adjacent symptoms, gastroparesis is the not-so-silent killer. It robs you of your heart and soul, of your body, of the person you recognise in the mirror. I hated myself in this season. I could not understand why my own stomach had turned against me.

I found my way through partly by finding community — people on Instagram like @gastroparesisawareness2024 who were sharing the exact information I needed, in real time, from real experience.

If you are living with this: please share your story. You never know who it may help. And if you are an able-bodied human reading this — lead with kindness. The body you see may be fighting a war you cannot imagine.

I hope I am helping someone out there.

Can you see the feeding tube? It was a nightmare. They kept placing it back down my nose in the hope it would reach far enough to feed me. My vagus nerve had collapsed onto my stomach, so the nerves that tell the gut to hold food and break it down simply weren't firing. Food had nowhere to go.

That feeding tube went back in probably thirty times in two and a half months. Gastroparesis was front and centre — I was vomiting up every extra smoothie they gave me, and the vomiting was so violent that the tube would come straight back out with it. Rinse. Repeat. Try again.

Eventually the plan was clear: I had to gain enough weight to survive a major operation — a bypass from the oesophagus into the jejunum, the middle section of the small intestine. The jejunum is a muscular tube roughly 8 feet (2.5 metres) long, responsible for actively breaking down food and absorbing the vast majority of vital nutrients and water into the bloodstream.

Description of the jejunum with thanks to the Cleveland Clinic.

This photograph is from the day I urgently needed both white and red blood cell replacement. My body had run out of the raw materials it needed to keep going, and the transfusions were the only bridge to the next hour.

To every nurse who hung a bag, checked a line, and spoke gently to me while they did it — thank you. You held the ceiling up when I couldn't.

Then the kidneys began to fail, and everything swelled. The most alarming of it was in my feet — puffed and shining, unfamiliar to me. On top of that, I contracted C. difficile in hospital: a bacterium that causes severe inflammation of the colon (colitis). It typically infects people whose healthy gut bacteria have been depleted, allowing the resilient C. diff to multiply and release harmful toxins.

C. difficile definition with thanks to the Centers for Disease Control and Prevention.

I had pancreatitis twice — inflammation of the pancreas, a vital organ behind the stomach that produces digestive enzymes and insulin.

Pancreatitis explanation with thanks to the Mayo Clinic.

I am still in medically induced liver failure — and even that wasn't improving at the time. All I really remember is sleeping. So much sleeping. My little body was quietly fighting everything at once.

Finally, when I reached 35 kilograms, my team were cautiously confident I would survive the operation. This last picture is from the day I left hospital. My mom had bought me clothes from the children's section, because nothing else would fit.

I thought that would be the end of the nightmare. It wasn't. I had not yet been introduced to the behemoth that is FND. The bypass and I would have more teething problems too — another fatal face-off with death. But that is a chapter for another day.

Hope still springs eternal.

I have since gained weight in a healthy way. My story is not over — no, it has only just begun. I am hopeful that more improvement will come. I just need to keep fighting, and hold on to the magic carpet.

The crippling pain of FND is something that never goes away. What truly takes my breath is stress. Stress harnesses whatever pain level I'm already in and kicks it up by two thousand percent. The fear of how bad it will be — will I walk, will I talk, will I move, will I get through the day — is its own second illness.

I live with fear and anxiety every day. And yet, when I wake up, I get determined. I push through whatever pain is there. I walk. I talk. I journal. I remember what I've done, seen, read. Some mornings that determination is the only medicine I have.

Yesterday was so hard. I woke with my body contorted, hands and feet in spasm, my lower back seized, crying and screaming in pain. In moments like that my brain sends fear signals through every inch of me. The pressure to live a happy life blurs. Fear and anxiety arrive and make me a slave to the pain — I feel everything: blood moving, bones aching, my body curling into a ball of tears.

The genesis this time was small and ordinary — my phone was stolen. My banking, my social media, my emergency lifeline, my whole portable life, gone. I spiralled. I panicked. I couldn't breathe. Then the migraine. Then the seizures.

Functional seizures present like epileptic ones — but they aren't. I can't tell you if they're worse or the same; I can only tell you that I am fully aware the whole time. The more it takes hold, the more I panic, the more it grows.

From the outside you see someone walking without an aid, smiling, showing up. From the inside, my life is a constant boxing match with Mike Tyson — and my Mike Tyson never rests, never stops, is always present, always trying to consume me.

But no one wants to hear about a sad life every single day. So I get up off the floor. I land a few hits back — just so he knows how determined I am to carve out a new life, to live an authentic one, to refuse fear and pain as my masters.

I do this every day because I will not allow FND to define me.

Finding the strength to overcome — that is a daily dedication. The daily grind and push to do the things that healthy people take for granted. One thing I know for sure: you cannot do this without an incredible mindset and the will to do the impossible every day.

People see me walking. Walking in heels, no less. They see me dressing up and doing my makeup, and from the outside it is a mirage. The truth is that on the inside there is a raging bull — a person thirsting for the life they once had, wishing for it, praying for it, begging for it.

But looking back is lovely, and it will trip you up. It will be the reason you cry and beg for forgiveness for sins you never committed, in the hope that the nasty dream that is your reality would be just that — a dream. But it's not.

Without healthy relationships and an outlet to pour out your heart to a neutral person who can guide you, you feel less like a fighter and more like a burden. If truth be told, fighting is all there is to do. Because if you stop, you will regress. You will deplete your journey.

FND will not kill you physically, but mentally it will kick you in the gut, punch you in the throat, and ask you to thank it for the pleasure. FND is a narcissist. It will mentally collapse you if you let it.

My stubbornness, my team, and those who love me will drive me forward — catapult me into the future I can still have. The story is a little different now, but it is a story of inspiration, of someone who, with admiration, gives it her all.

Count me out, at your peril. FND is not my story; my fight is.

I am strong in will and in mind. I will breathe through the pain and fight like crazy to make myself proud every day.