'I woke up to bed wet now I'm having 15 screws drilled into head'

Tilly Jones was thriving in her dream job working on costumes on film sets for shows like Killing Eve when her whole life suddenly turned on its head.

At the time she was just 24 and she remembered: I woke up alone having wet the bed, blood over my pillow and face from chewing my tongue and very sore.

I was clearly on another planet because I got in my car and started driving to work. I rang my boyfriend who told me to turn around and go home immediately. I had clearly had my first tonic clonic seizure.

One week later, she suffered another tonic clonic seizure, which is where you lose consciousness, and she was diagnosed with epilepsy a brain condition which disrupts the electoral communication between neurons in the nervous system.

It is not known what triggered Tilly's seizures, and the only thing she suspects is sometimes working 16 hours a day as a costumer, where she often had to call her mum while driving home to help keep her awake.

And despite getting her diagnosis in April 2017, Tilly now requires 15 screws drilled into her head to pinpoint the part of her brain that is malfunctioning, before a second brain surgery will remove it.

A GoFundMe has been set up for her (Image: Tilly Jones)

Tilly, 33, requires this extreme course of action because no medication has stopped her seizures, which she now has at least once a week.

One of the eight medications she has tried even made her suicidal and slowed down her brain function so much that she couldnt even remember words.

One bad day involved having nine seizures and as for a recent one, her boyfriend, Tom, said: She had one a couple of weeks ago where she was struggling to breathe, and started to go blue, purple. They are the really terrifying ones.

And speaking to this reporter about her brain surgery, which is expected to happen next year, Tilly, who lives in Stamford in the UK, said: I am excited because I am so sick of my life at the moment. I get bored.

Because I cant do very much, if I do too much, then my body punishes me with a seizure. So I am excited about the proposition of being seizure free.

But Im equally terrified. I was awake all night recently because I was thinking of the letter Im going to write to my friends and family because what if I wake up brain damaged.

Tilly struggles to remember things she has done with loved ones (Image: Tilly Jones)

What if I dont wake up? But then the thing is also with a seizure, which I dont think people realise is, is every time you have one, you are causing damage to your brain. So I am going for it.

Speaking to Tilly, you would never realise she has faced so much pain and suffering in recent years, simply because she has an infectious personality and is not afraid to make light of her situation.

However, the reality is that her life has been transformed in the past decade, and she has been stripped of her independence and even part of her identity after having to quit her job for good two years ago.

Due to the severity of her seizures, she has been left unable to work, and before having to stop she was spending small fortunes on Uber rides just to get her to different film sets, after her condition cost her a driving license.

She now lives with her partner, Tom, who has to watch her walk into town, despite it being just five minutes away.

She wants people to have a better understanding of what living with epilepsy is actually like

And speaking about her life now, she said: Its not just the seizures, its the day-to-day living. Its the fear of knowing if youre going to have a seizure and never feeling safe.

She said she has to be babysat 24/7 which drives her mad considering she is 33 and used to thrive off being independent.

However, the seizures are just one part of her struggle, and she said another symptom has been memory loss.

I find that heartbreaking, she told us. I dont remember my friends weddings. I dont remember anyones 30ths.

Someone will say, Tilly, do you remember when we went for a meal there? And theres absolutely no memory of it. Nothing.

She added: Im heartbroken by family and friends who are terrified to be on their own with me in case I fit. One of the hardest parts of the condition is that its invisible.

Tilly and her boyfriend Tom (Image: Tilly Jones)

In recent days, Tilly has been given a nice boost, after her friend Sophie, set up a GoFundMe for her.

She was hesitant to accept help but Sophie insisted and more than 8,000 has already been raised for Tilly who now has to live off benefits which covers her rent.

The money will help with therapeutic support, specialist treatment, help with daily life, post surgery funds and also for Tilly to freeze her eggs.

It will be years before she can try to conceive after her brain surgery and by then she will be in her late 30s.

And speaking to us, Tilly said: Ive always wanted to be a mum.

She hopes brain surgery will finally stop the seizures (Image: Tilly Jones)

Writing on the GoFundMe, Sophie said: Tilly is incredible. She is the most hilarious and honest person you will ever meet, and despite all of these awful things happening to her, she is still very much Tilly. Funny, creative, so driven and wonderfully generous.

Absolutely anything you can give will help.

We just want Tilly to know that she has people around her who are rooting for her, supporting her and who love her more than anything.

To make a donation to Tilly's GoFundMe, you can do so here