Warning: graphic content
Megan Jackson, 21, from Leeds, has been diagnosed with functional neurological disorder (FND) and suffers memory-wiping seizures whenever she gets too happy.
The devastating condition, which affects how the brain receives signals - impacts every aspect of Megan's life, from what she watches on television, to how she spends her spare time.
Warning - the below video contains graphic content that some readers may find distressing.
Megan's partner, Tara Sorkin, 22, has even written a diary, filled with pictures and information to help her remember - and she even plays their favourite songs to jog Megan's memory.
The illness has meant some of Megan's happiest moments have been ruined by the condition, with simple pleasures such as winning a bet on the Grand National sparking a seizure which meant she forgot she'd even won.
Meanwhile, surprising news can also cause a severe memory lapse.
"It's so depressing. I have seizures pretty much every day," says Megan.
"I only need to laugh then I have a fit. It affects every part of my life. I can cope with the seizures because I really don't have a clue what's going on when they're happening, but it's the memory loss [too].
"Sometimes I forget who my girlfriend is and that's terrifying. Sometimes I forget family members. It's like my memory lapses.
"The most bizarre thing is I can wake up and forget I like certain foods. I'll buy something then the next day think 'why did I buy this - I don't like that?'.
"The worst part is when I wake up from a seizure and have no feeling in my legs. I can be stuck like that for days and I have to wee in a cup or throw myself off the bed and take myself to the toilet.
"It's so sad that at 21, I have to make myself miserable - but not too miserable - so I don't have a fit."
Now, Megan has launched a GoFundMe page in the hope kind strangers will donate towards her seeing a specialist to put an end to her daily struggles, otherwise she faces a long waiting list to see an NHS neurologist.
Megan was first diagnosed with the condition when she was 17. For months, mum Sanchia Jackson, 45, would rush Megan to A&E after the teenager suffered up to 35 seizures a day.
After a referral to a neurologist, Megan was diagnosed with FND and offered cognitive behavioural therapy, but following seizures, she would completely forget the session.
"The [seizures] were so scary. They explained it's like a computer with too many windows open, and once you open another window, it just crashes. That's why my body has a seizure. That's how it deals with stress," she continued.
"They said to me I have to be on a waiting list to have CBT. I finally got my appointment for that but I was only seen once.
"Every time I had a seizure, which was every single day, my memory would restart, so I'd forget the appointment I'd just had.
"I've not had any help since and that was five years ago. I've been left in the wings for so long."
Megan's relationships are hugely affected by the condition, with Tara unable to ever surprise her girlfriend with presents - or a proposal.
"Part of my illness has probably stemmed from not being myself. I only recently came out as a lesbian since meeting my current girlfriend," she said.
"When I met her, my fits were way worse because I knew I had to tell my family. It would just come out in my fits otherwise.
"We've only been together a few months and we've been through way too much. We shouldn't have been through this amount of trauma and I've forgotten her at least four times.
"She's really good with it. She writes diaries to me every day and keeps them in my notebook on my phone.
"It's like 50 First Dates. Everyone refers to it like that. She puts our songs on to try and jog my memory, but it depends how I react to it.
"Sometimes if I come round and someone says 'this is your girlfriend, Tara', I'll be like 'what the hell - I'm not even gay'. I think no one knows [my sexuality] because I've forgotten.
"It's so traumatic for all of us, especially when it's someone so close to you who you spend so much time with. Even if she shows me pictures, it means nothing because I've got no feelings there for the person at all. It's so sad.
"I worry about life events such as being proposed to. We were talking about our wedding day the other day. If she proposed to me, you'd have to get it on camera because I'd be out like a light. You can't casually bring getting married into conversation."
On several other occasions, Megan's emotions have triggered seizures, meaning some of the most joyful times in her life have been ruined by her fits.
"Heightened emotions cause me to have these seizures. Sometimes it barely looks like I've had a fit, but for some reason my hand stops working, [or] I'll have slurred speech or stammer," she says.
"Whenever I get stressed, it comes out in weird ways. If you try to suppress it it makes it worse, so you've got to ride it out. There are certain programmes I can't watch because they're too funny or too sad.
"There's a programme called This Country. Every episode makes me laugh so much that it can put me into a seizure. The whole family know not to put it on when they're around me.
"When I was 18, I once bet some money on the Grand National and my horse came in. I was getting so excited that I was going to win that I passed out.
"When I woke up, my mum said 'Megan, do you remember you've just won some money on the Grand National?' I had no idea it was even on that day, then I checked and I'd won some money, so I passed out again.
"It's like a vicious circle. I can't be surprised or anything. Loud noises and fire alarms are really dangerous. Fire alarms set me off, then I'm out of it and I can't get out the door quick enough.
"I could wake up anywhere without any [working] legs. I can never go out by myself."
Last summer, Megan was forced to leave one job after a particularly severe seizure. But weeks later, she tried washing her work clothes as she had forgotten she was no longer employed.
"I can't work. I've been let go by so many jobs. [Even a few weeks after losing one job], I had a really bad fit where I lost a lot of my memory," she explained.
"I woke up, went and got all my work stuff. I washed all my work clothes and I said to Deanna, 'I've got to go get my washing because I've got to dry it before tomorrow'.
"She said 'Megan, what do you mean?' I said 'Well, I've got work at 08.15am'. She burst into tears. She said 'Megan, you don't work there anymore. You don't have a job anymore'.
"That was the scariest thing. If I didn't have anyone there, I would have gone to work. I can't hold a job down and I'm not in receipt of any benefits because the government takes forever to decide if you can have them or not."
Megan has since launched her TikTok account, where she has more than 280,000 followers, and is committed to helping others with invisible disabilities - specifically FND.
"The reason I set up my TikTok account was because this generation is so influenced by social media," she said.
"When you look at my Instagram, you'd think I'm a regular 21-year-old girl who goes out, sees her friends, goes on holiday, when in reality, I'm extremely disabled and I don't get to do as many things as I'd like to.
"I can't drive, I can't go anywhere on my own, I can't bath without being watched. I wanted to make more people aware of hidden disabilities. I want to be a voice for others going through what I am. It gave me a purpose.
"I want to share my journey with people on TikTok as they are donating. The neurologist appointment will be around £300, then MRIs are £500. The likelihood is the therapy I need is CBT.
"I either need to go to an in-patient unit where I can get all the different types of therapy at once, or I'll need to go once a week. If I do that privately it's going to cost so much money."
You can donate to Megan's page here.
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