Tuesday morning felt like a small win before it had even begun. It was spring, there was actual daylight, and for once I wasn’t waking up in the dark wondering what day it was. I was up early for my first-ever Rheumatology appointment, and I didn’t really know how to feel. Part of me was hopeful, but another part of me was already tired. When you’ve been dealing with symptoms for a while, you don’t walk into these things thinking everything will suddenly be fixed. You walk in thinking, please just listen.

Driving into the hospital completely threw me off. It didn’t feel like London at all. It was calm, open, quiet… and then there were cows. Actual cows, just standing there in the distance like this, was the most normal thing in the world. I’ve lived near this hospital for over six years, and somehow this was the first time I’d seen any of it. Typical.

The appointment itself actually went okay, which I don’t say lightly. I was in there for nearly an hour, and for once I didn’t feel rushed or brushed off. She listened. Properly listened. I didn’t even manage to say everything because there’s just too much, but I said enough to feel like maybe this is the start of something. She arranged blood tests straight after, and for the first time in a while it felt like things were actually moving.

At one point during the appointment, the doctor asked me if I had been stressed lately. I told her my daughter has FND and POTS, and she said that could be contributing to my stress.

And I just thought…

Of course it is.

But then I said something I probably wouldn’t have said before.

I said, “Can we possibly deal with me today, and not talk about my daughter?”

Because the truth is, I’ve spent years focusing on her health. Fighting for her, supporting her, putting everything into making sure she was okay.

And somewhere along the way… I put myself on hold.

So I said it honestly.

“I’ve waited years to deal with my own health because I was looking after her.”

And that moment felt important.

Not selfish. Not wrong.

Just… overdue.

Of course, life being life, there had to be a moment. I told the nurse I was desperate for the toilet after the appointment, and I mean desperate. So off I went, thinking I’d timed it perfectly. I came back, sat down ready for my blood test, and was handed a jug and a tube for a urine sample. I had literally just been. You honestly couldn’t make it up.

After the blood test, I was told to drink loads of water and wait around. So I sat there, watching people come and go, and ended up chatting to a lovely elderly lady about our arthritic knees. It sounds ridiculous, but it was actually nice. Just a normal conversation, no pressure, no pretending, just two people dealing with what their bodies are doing.

I was upset with the neurologist and his colleague last week after my daughter's phone call with the neuropsychiatrist; they had put all my daughter's illness down as just mental health, and it didn’t sit right with me at all. After a visit to a private researcher/doctor, he had told us that she could possibly have an immune-mediated disease. It felt like they weren’t even considering that.

So I wrote them a letter. Not just any letter — a strong one. I laid everything out, shared what I had found, and made it clear that this couldn’t just be dismissed. And to their credit… they listened.

But even then, that anger didn’t just disappear. It stayed there, in the background. Because once you feel like your child has been brushed off, it’s not something you just move on from.

And then something shifted.

Honestly, it felt like a miracle.

My daughter has now been referred and has an actual appointment at a neuromuscular department in a London hospital. A real appointment. Not dismissed, not written off, not pushed aside. Someone is finally taking this seriously.

And that brought a kind of relief I didn’t even realise I needed. Because when you feel like you’re constantly fighting to be heard, even the smallest step forward feels huge.

At least now… they’re not writing her off.

Wednesday was chaos. It felt like I spent the entire day driving up and down one long road. I dropped my daughter at college, went to my partner’s to do some work, and then got a call that she’d forgotten something important for makeup for a show. So I drove home, grabbed something to eat because I was starving, then drove back to deliver it. After that, it was Tesco, then the post office to return a broken Amazon cable, then sorting her old phone, only to be told the motherboard was broken. Back home, a bit of work, then back out again to take her dinner, home again to have chicken soup for dinner, more work, and then back out again to pick her up. By the end of the day, I didn’t even feel like a person, just someone driving back and forth on repeat.

Thursday was my gym induction, and for once, I decided to be sensible. I told myself before I even walked in that I’d do five minutes on each machine and that was it. No pushing, no trying to prove anything, and definitely no further damage to my knee. Severe arthritis in my right knee isn’t something I can ignore, no matter how motivated I feel. I remember the Rheumatologist said I would need a knee replacement, but not yet, as they only last 15 years, so it's best to wait as long as possible. 

And this week, I actually exercised. Properly. I used the rowing machine and the bike, and even increased my time by five minutes on each. I did try the treadmill, but I regretted it almost instantly. My knee was not having it. Still, I showed up, and that’s something. The hardest part is getting there. Once I’m in the gym, I’m fine. I just get on with it.

Long story short, while I was talking to the gym instructor about all my allergies, he introduced me to a lady who said she has similar histamine problems to me. She told me about this product called DAO and said it might help with my food eczema, and that I should try cutting out dairy and gluten. So of course, I ordered it straight away from Amazon, thinking maybe this is the answer.

I took one tablet.

And got a banging headache.

So that’s that… I’ve stopped it for now.

Because again… nothing is ever simple.

Then there’s the food side of things, which feels like its own battle. The gym instructor told me to “eat less and exercise more,” and I just thought… that doesn’t work for me. I told him I lost 27lb without exercise, a couple of years ago, so it’s clearly not that simple. Too much protein makes me feel unwell, but too little protein makes me feel unwell too. It feels like a constant guessing game, a vicious circle that I can’t quite get right.

Saturday morning, I even went to the gym with my son, which honestly felt like a miracle in itself. Not just because I got there, but because we were there together. No rushing, no chaos, just a normal moment. And those moments feel different now. They mean more.

I finish every session with five to ten minutes on the hydro massage, and it’s probably the calmest part of my day. Just lying there, letting everything settle, no noise, no pressure.

I even gave up dairy for two days, which for me is an effort. But then Sunday happened.

The clocks went forward.

So not only was it already a grey, rainy day… we’d also lost an hour’s sleep.

Perfect.

We went to my cousin’s antique and vintage fair in Belsize Park. It was raining, one of those grey, miserable days, but I was out with both my kids for the first time in two and a half months. And that mattered more than anything else.

Even though we were only there for about 20 minutes, we made an effort to attend, and I have to support my family. We ended up in Venchi after, having coffee and salted caramel ice cream on a rainy Sunday afternoon. And honestly, it was worth it. In that moment, nothing else really mattered.

After that, I had a very urgent stop at Waterstones, because when you’ve got to go, you’ve got to go. I was desperate. I ran in, found the toilets, and they were honestly disgusting. Overflowing bins, sanitary everywhere… just not okay. But at that point, you don’t have a choice. You just get in, get out, and try not to think about it again.

At one point I said to a lady in a makeup shop, “shame about the weather,” and she replied, “we are lucky to be on this earth.” I mean… I was just talking about the rain!!!

Because when I really think about it, I try every single day. I try with the food, I try with the exercise, I try to understand what my body is doing. Not dramatically, just quietly, in a way that builds up over time.

Why do you have to fight to get anywhere with your health?

That’s the question. Because it shouldn’t feel like this. It shouldn’t feel like you have to push, explain, repeat yourself, chase, and prove something is wrong just to be taken seriously. It shouldn’t feel like you’re constantly trying to convince people that what you’re experiencing is real.

And yet… it does.

You sit in appointments trying to fit everything into a few minutes, then walk out thinking of all the things you didn’t say. You get told it’s stress, or hormonal, or “one of those things,” while you’re still living with symptoms that don’t make sense. So you go home, you start researching, you notice patterns, and you begin advocating — because if you don’t, who will?

That’s the part no one really talks about. You don’t just deal with being unwell, you end up fighting to be heard. But maybe that fight says something too. It says you know your body. It says you’re paying attention. It says you’re not willing to let things be brushed aside.

And sometimes… that fight is exactly what gets things moving.

Even though it shouldn’t have to be that way.

But then I look at this week.

I went to my appointment. I exercised. I didn’t give up. I showed up. I had moments with my kids.

And maybe that’s not perfect.

But it’s not failure either.

And for now…

That’s enough.