It all started with pain and stiffness in her legs. Jayne had a feeling something was wrong, but didn’t seek medical attention until one morning when she woke up and couldn’t move her legs.
The doctors ran numerous tests- MRIs, blood tests, CAT scans, and lumbar punctures. She also experienced excruciating pain in her eyes whenever she moved them, a condition known as optic neuritis, leading doctors to believe she had multiple sclerosis.
“It’s like having a hot poker in your eyeball. It’s horrendous,” Jayne said.
This has also affected her vision in her left eye, which is at about 60% of what it was. But Jayne Menzies, 51, who lives in Ashford, didn’t get her actual diagnosis until three and a half years later. That’s three and a half years of not knowing what was wrong. Three and a half years of wondering whether things would ever get better. Three and a half years of losing hope.
“It made me feel awful, like an imposter,” she said.
“I felt like they didn’t believe me and it was all in my head. And then I got angry because I thought ‘Why is this happening to me?’”
Eventually, it was a neurologist who phoned her up one day and told her she had functional neurological disorder.
An estimated 50,000 -100,000 people in the UK have FND, yet many healthcare professionals haven’t even heard of it. Women are disproportionately affected, making up between 60% and 75% of patients.
“It was a relief to finally have a diagnosis. But all they did was tell me to look at a website, and they discharged me,” said Jayne.
She has now had FND symptoms for almost five years, and has had repeated incidents of waking up and being unable to function from the waist down.
She joked half-heartedly: “I’m falling to bits.”
Since then, Jayne has had to battle with explaining her condition over and over again, even to doctors. It was through her FND support group, not her doctor, that she found out about treatment options, based on what had and hadn’t worked for others. After being in the support group for a couple of months, she decided to volunteer to be a peer support volunteer to help others going through the same thing.
Then Jayne’s seizures unexpectedly began ten months ago. Non-epileptic seizures are a common symptom for those with FND. Experts say the best way to deal with them is to ensure the person is safe from danger and wait it out.
“I was sitting down and I just blanked out,” she said.
“It was like somebody had switched me off and switched me back on again.”
She now experiences regular seizures, some big, some small. Sometimes she can feel them coming on, but she is still unsure what triggers them.
“As it got worse I started shaking a bit like somebody having an epileptic fit.
“I can hear people but I can’t communicate with them.
“People ask me if I’m okay and I can hear them but I can’t do anything about it. It’s horrible.”
Because of her seizures, Jayne needs to make sure she is in a safe place if she is about to have a seizure. Sometimes this means if she knows she is going to have a bad day, she will stay at home in bed.
“I’m just a bit scared about going out by myself,” she said.
Jayne’s seizures were also a big contributing factor to her leaving her job. She previously worked at a supermarket, but was having regular seizures, and her mobility was deteriorating.
“The biggest impact for me has been my independence and mobility. I was always quite independent.
“I had worked since I was 14 so not working blew my mind.
“Now I’ve always got to rely on people, and I don’t like that.”
One of the people who helps Jayne is her boyfriend Alan. But she said she sometimes feels like a burden on Alan and her family.
“He didn’t sign up for this. I wasn’t like this when we first met and I’m basically disabled now,” she said.
“I find that really hard, especially some days when I just want to go to bed and lay down and he doesn’t understand.
“It’s just hard. Physically and mentally.”
Thankfully Jayne has managed to retain her sense of humour.
Jayne’s sister, Fiona, recalled visiting her in March of this year. Her and Jayne had taken Jayne’s mobility scooter out to the shops near Jayne’s house and were returning home up a hill when a young boy on a bike rode alongside them. Him and Jayne locked eyes as he sped up to overtake them and she flipped from the ‘tortoise’ setting of her scooter to the ‘rabbit’ setting, racing the boy on his bike.
“It was as if she was saying “I can go faster than you mate”,” said Fiona.
Jayne said the main things that need to change is a set care pathway and medical professional’s outlook on FND.
“Don’t just dismiss us and say there’s nothing you can do- there’s always something you can do. “We’re not making it up. Be more understanding to people that have got it.”
She said she hopes by the time children who have FND get to adulthood, treatment and awareness will be a lot better.
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