From 12th to 16th September, my daughter was staying at an epilepsy centre in Buckinghamshire, wired up to an EEG machine while the team looked for unusual activity in her brain.

Four days and four nights of continuous monitoring. A whole 96 hours attached to wires, staying in one room and waiting.

Meanwhile, I was on daily visiting duty, driving back and forth through the countryside. Sounds lovely, doesn’t it? Rolling fields, pretty villages, a peaceful little drive.

Except I was too busy gripping the steering wheel to appreciate any of it.

The country lanes were narrow, the bends had blind spots, and I was permanently expecting a lorry to appear in front of me. Then one would, and I’d be wondering whether breathing in would somehow make my car narrower.

Whoever describes these routes as relaxing clearly hasn’t met me coming round a blind bend.

Once I arrived, the staff were really lovely. Friendly, welcoming and very excited about their new equipment.

“You’re the first person to use it!”

Oh, lovely.

Then someone else would come in.

“You’re the first person to use the new equipment!”

Yes, we’d heard.

I must have heard it at least five times from different members of staff coming in and out of her room. By the fifth announcement, I was wondering whether my daughter should be unveiling a plaque. Perhaps there was a ribbon-cutting ceremony we hadn’t been told about.

My daughter, meanwhile, was understandably bored. She couldn’t leave her room, so there was a lot of lying in bed and trying to make the hours pass.

The Wi-Fi was diabolical, which really helped when she was already bored and couldn’t go anywhere. Her laptop wouldn’t connect, so she only had her phone to look at between visits, making the days drag even more.

You’d think being connected to all that impressive equipment might at least come with a decent internet connection.

They could monitor her brain activity around the clock, but getting her laptop online was apparently a step too far.

I visited every day, and we played Kalooki to help pass the time. Thank goodness for a pack of cards. No password, no signal and no little circle spinning round while you slowly lose your patience.

On two occasions, nurses came into her room and asked, “Did you just have a seizure?”

“Not that I know of,” she replied.

Well, that certainly gave us something to think about between rounds of Kalooki.

Those moments made me appreciate why she was having 96 hours of monitoring. There was a recording for the team to review, including moments when she hadn’t noticed anything herself. What they meant was something we still needed the specialists to explain.

And what did I do with the rest of my week?

Well, I asked my friends if anyone was free to go out. Everyone was busy. Clearly, they hadn’t received the memo that I had a gap in my diary and expected a social life to appear immediately.

So I did my work, drove back and forth to the hospital and nursed a toothache with salt-water rinses. Nothing says “living your best life” quite like standing over the sink with a mouthful of salty water.

I made my own dinners, saw my boyfriend and played some loud house music on my record player. The neighbours may not have chosen to attend my little event, but I suspect they could hear it.

I do hope they appreciated the music selection. There were no requests.

Somewhere between work, hospital visits, cooking and my occasional appearance as the neighbourhood DJ, I actually managed to relax.

My daughter was very relieved to come home on Friday. She’d had quite enough of the bed, the wires and the internet that barely deserved the name.

Underneath the boredom and our attempts to pass the time was the hope that the stay would help give us some answers. The cards and the jokes helped, but that was why we were there.

Then came another hospital visit.

By Tuesday night, things had taken another turn. My daughter didn’t sleep, and on Wednesday morning she told me she’d been awake all night and couldn’t take her medication, eat or drink.

I called 111. They told me to contact a doctor. I spoke to one, but my daughter said she didn't feel well enough to go to the surgery.

So I called 111 again. This time, they told me to call 999.

Then came the waiting.

A few hours passed, and 111 rang back to say they would send an ambulance. By this point, around six hours had gone by.

My daughter went in the ambulance, and I drove to meet her at the hospital.

So there we were, back in A&E. This time, we’d sought help for her mental health, alongside the worrying fact that she wasn’t eating, drinking or taking her medication.

Nothing prepares you for this.

For sitting beside your daughter, knowing she needs help, while trying to take in everything happening around you.

For sitting amongst people from all walks of life, each with their own pain, worry and reason for being there.

The woman next to me told me through her mask that she was due for dialysis in two and a half hours. She had a hacking cough and then explained that she had a chest infection. I felt for her, while quietly wishing there was a little more space between our chairs, pleased I wore my mask, as the last thing I need is a chest infection with asthma. 

A man walked around with an injured eye and his trousers down by his knees. I didn’t know his story. I was sitting there with my own. I think A&E had lost him, as I saw him in the restaurant. 

Paramedics came through the doors with more patients. People were being cared for in corridors. There was constant movement, conversations, footsteps and waiting.

Outside, the rain poured down (so pleased I got my car washed on Monday)!!!

And there I was, in the middle of it all, trying to hold myself together.

I could feel a tear coming. I tried to blink it away because I wasn’t sure that, if I started crying, I’d be able to stop.

After about an hour in A&E, my daughter was given a room. Around an hour after that, she began having a non-epileptic seizure.

My phone was on silent, but my brilliant GALARM app sounded an alert. I looked up and saw what was happening.

My heart sank.

She’d spent 96 hours wired up to an EEG machine without one of these episodes happening. There had been those two occasions when nurses asked whether she’d had a seizure, but we were still waiting for the recordings to be interpreted.

Now, back in A&E, she was having an episode that lasted around an hour and a half. The timing felt so cruel.

I asked the nurse to get a doctor, but we were struggling to understand each other. When you’re trying to get help for your daughter, a communication barrier makes everything harder.

Eventually, I went to find the doctor myself. She prescribed sedation, but the nurse brought tablets when an injection had been prescribed.

I went back to the doctor to query it. She checked, confirmed it was an injection and then explained to the nurse what needed to be done.

Meanwhile, I was watching my daughter and waiting.

The nurse said she needed to cross-check the medication. Of course I wanted the checks done properly, but I also needed someone to explain what was happening. Instead, I felt responsible for chasing people and clarifying instructions while my daughter was having a seizure.

After an hour and a half, the nurse appeared with the medication. Even then, preparing it seemed painfully slow. I’ve watched other nurses prepare it much more quickly, and by that point every moment felt unbearable.

Then she said, “I apologise. I haven’t been at this hospital for a year, and things have changed.”

I appreciated the apology, but it wasn’t reassuring. If she was unsure, I needed her to get someone who could support her.

By then, my patience was gone. I was frightened, exhausted and watching every movement, wondering how much longer it would take.

Eventually, the medication was given, and my daughter came out of the seizure. She stayed overnight and slept.

When I returned on Thursday, I found she had been discharged without seeing a doctor that morning.

After everything that had happened, I couldn’t understand it. She’d arrived unable to eat, drink or take her medication, then had a prolonged seizure episode. I needed someone to review her and explain what happened next.

Eventually, she did see a doctor. He prescribed antibiotics and put her on a drip. So we had gone from being told she was discharged to her receiving further treatment because she had an infection.

I wanted to sit beside my daughter and be her mum, but I felt I had to keep getting up, finding someone and asking another question.

Finally, once her drip had finished, we were able to go home.

By then, I was exhausted. After the phone calls, the waiting, the seizure and chasing people for answers, I was relieved to be taking her home.

Earlier, I could laugh about country lanes and dreadful Wi-Fi, but by the end of this hospital visit, I had very little humour left.

Honestly though… I just wanted my daughter home, and a moment when I could finally stop holding everything together.