Honestly though, this week has been a week of hell. Not just for me as a mother, but for my daughter too.

On Wednesday 13th May, my daughter started having a seizure at 8:57pm. By 2am, her left hand had locked completely. We finally got home around 4am, exhausted, traumatised and running purely on adrenaline.

Then came the 14th May.

Another seizure started at 9:20pm. This time we ended up at a different hospital because our usual hospital was only accepting people into corridor care. Honestly, I wish we had just done corridor care because the experience at the other hospital was horrific.

There was a doctor on duty who refused to give her medication to help bring her around. He just left her seizing for two and a half hours while her body became stiffer and more locked with every passing minute, and she ended up with paralysis in both legs afterwards. Watching your child trapped inside their own body while begging for help is something I cannot even explain properly in words.

We eventually got home around 2am.

On the 15th May, another seizure started at 2:30pm and we ended up back at our normal hospital, thank goodness, where the staff actually knew how to treat her properly. She self-discharged in the early hours of the 16th because after days of hospitals, corridors, bright lights and constant trauma, she just wanted to be home.

Then on the 17th May, another seizure started at 8pm and lasted all night. She stayed in hospital overnight while I came home and managed about five hours sleep before collecting her again on the 18th.

Then on the 19th May, another seizure hit at 9pm. Another overnight hospital stay. Another night of fear, machines, waiting rooms and exhaustion. I brought her home again on the 20th.

This is the reality of a teenager trying to live a normal teenage life while suffering from Non Epileptic Attack Disorder.

A simple cold spiralled into this.

Multiple seizures. Paralysis in both legs. A left hand locked solid. Only one limb on her body was working properly.

People hear the word paralysis and automatically assume she cannot feel anything, but that is not what is happening here.

She can feel her legs completely. If you touch them, she feels it. She can feel pressure, pain, temperature, all of it. The problem is her brain and nervous system have basically decided to start buffering like bad WiFi.

The signals are there, but somewhere between her brain and her legs the messages are getting completely scrambled. The doctors describe it as a “miswiring” between the brain and nerves.

Honestly though, imagine your brain repeatedly pressing SEND and your body just leaving it on read.

That is currently our life.

So while people may see a teenager sitting in a wheelchair, what they do not see is how terrifying and frustrating it is to be fully aware your legs are there, you can feel them, but your body simply refuses to cooperate.

One minute she is a normal teenager worrying about makeup, hoodies, snacks and what series to binge watch, the next minute she is being wheeled through A&E at midnight while her left hand is locked solid like somebody pressed pause on half her body.

And then there is me.

Now let me tell you, fibromyalgia and wheelchair pushing are not a good combination. Whoever designed this week clearly hated us personally.

My fibromyalgia has gone completely through the roof. Between pushing wheelchairs, carrying bags, surviving on about three business days worth of sleep, hospital chairs designed by Satan himself, stress levels through the ceiling and walking up and down endless hospital corridors, my body currently feels like I have completed the London Marathon whilst being repeatedly hit with a folding chair.

Every muscle hurts.

My joints feel like they belong to a 104 year old Victorian woman.

Even my eye lids feel tired.

At this point, between the two of us, we look like a very chaotic rehabilitation double act.

Every single time I have arrived at the hospital this week, the first thing out of my mouth has been:

“Hi, I have arthritis in my knees and fibromyalgia. Can I have a decent chair, because those plastic chairs are horrendous?”

Honestly though, whoever designed hospital plastic chairs clearly has personal issues with humanity.

One night my daughter was stuck in corridor care and I spent nearly eight hours sitting on one of those chairs that feels like it was made from recycled disappointment and concrete.

By hour six I could no longer feel my bum.

By hour seven I was considering asking for sedation myself.

At one point I got chatting to another couple next to us on the corridor. The poor man had just experienced his first non epileptic seizure while driving and had crashed his car. They had done a brain scan and told him everything looked “clear”, which is both reassuring and wildly confusing at the same time when your body has just betrayed you in the middle of traffic.

Meanwhile, directly opposite him was my daughter, actively having multiple seizures on the next bed while I attempted to rearrange my entire skeleton on a plastic chair from hell.

Honestly, at this point I think I deserve my own allocated parking bay outside A&E and possibly a loyalty card.

Five nights in and out of resus.

Corridor care.

Observation units.

The same doctors.

The same nurses.

The same security guards buzzing me through the doors.

Imagine walking into A&E so many times in one week that you are casually saying:“Hi again, please buzz me in.”

That should never become normal for a family, but somehow it currently is ours.

Sometimes we get a different doctor and honestly, within about thirty seconds I can already tell whether this is going to be a smooth night or a “here we go again” night.

I will say: “She is on the system, please go and look at her medical passport and history.”

Because this is not new to us.

This is 5 years of hospital visits, neurological symptoms, scans, seizures, specialists and trauma all sitting on one NHS file somewhere that probably looks like a short novel at this point.

One night my daughter was left completely catatonic.

She could not move any part of her body, accept her mouth she was able to speak but with her lips closed.

No movement in her arms, legs, hands, nothing at all.

I kept telling this new doctor: “She cannot move.”

The doctor said she was coming.

Ten minutes passed.

Then twenty.

Meanwhile I am sitting there watching my daughter trapped inside her own body while trying not to completely lose my mind myself.

Eventually I said: “Please just look at this photo.”

I showed her photo evidence of what had happened earlier, and suddenly, the urgency appeared out of nowhere.

Amazing really, how quickly people move once there is visual proof.

Before that, it honestly felt like we were not being taken seriously at all.

That is one of the hardest parts of conditions like this. Because the symptoms can fluctuate so dramatically, some people look at the patient like: “Well they moved earlier.”

Yes… and now they cannot.

That is literally the problem.

Then, while my daughter was being wheeled into the observation area, we suddenly saw a doctor we had not seen in over two years.

And honestly, it was one of those bizarre moments where time just hits you in the face.

The last time that doctor saw my daughter, she had not even done her GCSEs yet.

Since then she has completed her GCSEs, done her A Levels, had her gallbladder removed, grown up massively and battled through more health issues than most adults deal with in a lifetime.

A lot can change in two years.

Especially when your life seems to revolve around hospitals, specialists and trying to convince people your child is genuinely ill while also trying to keep some sense of normality alive at the same time.

And the strangest part is how quickly hospital life becomes routine.

There is me casually walking into the linen cupboard opposite my daughter’s room and helping myself to blankets because I already know she will get cold during the night before anyone has time to bring any.

At this point I know the best toilets to use.

I know the quickest route to the canteen.

I know the code for the hospital car park off by heart.

I know which corridor has decent signal.

Which nurse gives extra pillows.

Which doctor actually reads the notes before speaking.

And I know the tea and coffee man will eventually appear through the night like some sort of NHS guardian angel pushing a trolley of survival.

“Tea? Coffee? Biscuit?”

Bourbons.

Ginger nuts.

Custard creams.

Honestly though, after five nights in hospital, those biscuits start feeling Michelin star level, even though I regretted the ginger nuts two nights in a row.

At 12:30am, slightly emotionally unstable, surviving on adrenaline and fear, a ginger nut can genuinely feel like emotional support.

And that is the weird thing about hospital life.

Tiny things suddenly become massive victories.

A warm blanket.

A decent nurse.

A hot tea.

A chair with mild back support.

Somebody saying: “Do you want a biscuit?”

Meanwhile your entire life is quietly falling apart around you.

Honestly though, that is not normal knowledge for somebody to have.

Especially not because of their teenager.

Five nights in and out of resus, corridor care and observation units changes you.

You stop feeling like a visitor in the hospital and start feeling like part of the furniture.

At one point this week I caught myself confidently directing another family towards the toilets and then thought: “Charlotte, why do you know this building better than IKEA?”

And that is the really sad part underneath all the sarcasm.

This should not be our life.

I should not know hospital layouts better than shopping centres.

My daughter should not know what resus looks like at 2am.

We should not have favourite nurses, preferred corridors and emergency overnight bags practically packed by the front door.

But this is where we are right now.

And honestly, sometimes dark humour is the only thing stopping you from completely falling apart.

But right now, this is our reality.

And whether we like it or not, we just have to deal with it the best we can.

On the flip side though, there is finally one bit of hope.

She is finally being seen by a consultant at The Royal London Hospital for Integrated Medicine. At last, she is under a team that actually wants to investigate what is happening to her properly and help her.

It has taken me years of fighting, pushing, researching, crying, begging and refusing to give up to finally get answers for my daughter.

Painstaking years.

But finally, it feels like we may be getting somewhere.