Meggie Fitzgerald's health hit rock bottom in the aftermath of receiving the 2009/2010 H1N1 swine flu vaccine Pandemrix.
A Tipperary woman who was diagnosed with narcolepsy in the aftermath of receiving the 2009/2010 H1N1 swine flu vaccine Pandemrix claims that doctors told her “there’s nothing wrong with you, it’s all in your head”.
Roscrea’s Meggie Fitzgerald is one of approximately 100 young Irish people who have been diagnosed with narcolepsy - a condition characterised by excessive daytime sleepiness, disturbed night-time sleep, vivid nightmares and hallucinations, sleep paralysis (a feeling of being conscious but unable to move) and a sudden loss of muscle tone known as cataplexy - following the controversial vaccine Pandemrix.
The 21-year-old says doctors labelled her depressed when she reported symptoms that continue to wreak havoc on her life, attributing them to her father committing suicide. “I went on holidays to France after my Junior Certificate exams and my whole body just shut down. I was freezing in 30 degrees temperature, going around in a tracksuit, and I broke out in the worst cold sores that covered my upper lip. I went back to my GP and he sent me to Cork University Hospital. When I was trying to tell them what was wrong with me they turned around and told me ‘there’s nothing wrong with you, it’s all in your head’. When you’re crying out for help like that and nobody is listening you start to believe what they’re telling you. Because we couldn’t find an answer they said I was depressed. Then they said it wasn’t me, ‘it’s your mam - she’s making you think you’re sick’.
“After five specialists my extended family started to think there was nothing wrong with me. I looked perfectly healthy, but I couldn’t get out of bed, was sleeping all the time and couldn’t go to school. They even started to believe I was depressed, that something else was going on and that I was constantly looking for attention,” Meggie tells The Nationalist.
“Eventually I stopped going to my doctor because my dad committed suicide and it was easy to label me with depression. It was only when my GP’s son came on board that we found an answer - it was narcolepsy. After five consultants and three different hospitals we finally found an answer, all because my GP’s son has a friend who has narcolepsy,” she continues.
The devastating effects of narcolepsy with cataplexy forced Meggie to give up playing camogie and hockey, and dramatically altered her studies at Presentation Thurles. “I would have been a very good student and suddenly I always wanted to sleep. I was literally getting up in the morning and counting down the hours, minutes and seconds until I could go back to sleep. I quit hockey when I was just about to go for Munster trials, I gave up camogie, and I was falling asleep in study - I just couldn't stay awake. At this stage I was in my Junior Certificate and I just kept thinking ‘it's my exams and I'm studying so hard’.
“They had to put a bed in the school so I could take naps. My GP wanted me to take a year out and repeat fifth year but I didn't want to leave my friends behind so I argued with him that if I was to repeat any year it would be my Leaving Certificate. So much was changing and I wasn't going to lose my friends, so I was taken out of school three days a week and I got home schooled. I was able to say ‘I’m tired now, come at 11’ and go for a sleep for a few hours. I was only really in school for two days for the social side of things,” Meggie explains.
Meggie cannot stay awake but struggles to get a proper night’s rest, with her plight compounded by terrifying nightmares that leave her paralysed. “From the minute I close my eyes I’m fast asleep. I hit deep sleep really really quickly and I automatically enter dreams - some of them are normal dreams and some are really really really bad nightmares that have me screaming out in my sleep and jolting. If someone is trying to wake me from a nightmare I can enter sleep paralysis where I’m awake but my whole body is paralysed. It’s so frightening - I can’t move anything and I’m still in the nightmare, before I slowly get out of the sleep paralysis,” she emotionally describes.
Managing narcolepsy is tiresome and has forced Meggie to approach everyday with extreme caution. “I woke up this morning at 8am and by 9:30am I wanted to get back into bed and sleep. At the moment I have three naps a day - one at 11am, another at 1pm and then at 4pm, but if I’m watching TV in the afternoon I often fall asleep again.
“I have a very balanced diet and keeping hydrated is huge. Sometimes it’s just remembering to eat and keeping on top of it because I’m so tired and the actual effort of of picking up a fork and eating a bowl of pasta is so much more than it’s actually worth. When I really really get exhausted all I want is sugar but I have to try and avoid going for chocolate and sweets and actually eat something proper and sustainable and take a nap instead of reaching for that artificial energy like a Boost or a Red Bull like we all do. I’ll feel exhausted for two or three days if I don't manage myself well,” Meggie underlines.
Meggie’s university experience at NUI Galway couldn’t be more different to her peers. “If you ask any 21-year-old college student ‘how many times have you gone out this year?’ they probably won’t be able to tell you. I have only gone out once the whole year because I'm so tired. That’s fine for me because I know it has to be done, but when you have friends constantly asking you ‘are you going to come out tonight?’ it’s difficult. They will eventually stop asking me if I keep saying no.
“I live with friends in college who are very very good, but at certain times I have to go sit in my room on my own because I’m so tired and agitated. They haven't done anything to annoy me but if I stay around them I’m going to end up snapping at them.
“If we go to watch a movie or to the cinema it's awkward because they’re enjoying the movie and I’m asleep. It’s the little things like not being able to watch a hurling match or get excited in the first half when a goal is scored or if there’s only a one point difference because if I get so worked up in the first half I’m going to be asleep for the second half. It’s the same with movies - often movies have to be paused because my friends are like ‘we don't want her to miss this bit’ so they pause it for 20 minutes, have a chat and when I wake up we continue watching it,” she admits.
Law student Meggie is determined to become a solicitor and plans to sit her FE-1 Exam next year. However, the daughter of Anne Neville is devastatingly honest about her future job prospects. “My life has been thrown apart. Next year I want to sit my FE-1 Exam and I know I’m going to be able to them because I won't work unlike most people. After that I enter the world of work and I don't know what's going to happen. Employees won't know what narcolepsy is - when I try to explain it to them will they understand and accept it?
“At 21 years of age I need to know everything about my health. If I get a sore throat it can turn septic in half an hour. No 21-year-old should have to know every little detail about their health. If I go to hospital I have to be well enough to explain to the doctor on call what narcolepsy is because they simply do not know. The information hasn't been put out there by the Government - ‘narcolepsy has occurred because of the H1N1 swine flu vaccine, these are the symptoms and things that need to be done if you have a patient with narcolepsy who comes into A and E’.
“I’m allergic to the narcoleptic medication and on one occasion it caused me to go blind and we had to call an ambulance. In the ambulance I lost consciousness and they got me back and when I went to the hospital mammy was with me and she explained everything to the doctor. After about an hour giving me fluids, doing tests and getting me stabilized the doctor came out and said ‘you shouldn't accept another free vaccination from the State again’. That was extremely hurtful because I didn't accept it - a letter was sent out by my school saying we had to get this to stop swine flu and that it was safe. It wasn’t something that I voluntarily bought into,” she highlights.
Meggie praises her mother Anne Neville for being a rock of support, but fears that others with narcolepsy are falling through the cracks. “When nobody else listens to me she listens. When people were telling me I was going mad she stood by me and told me I wasn’t. I have a very strong mammy, but there are kids who don’t and they’re falling through the cracks. They could have this condition and their parents don’t know anything about it, they could be illiterate, drug addicts or alcoholics and people could be looking at them and going ‘ah look who their parents are, look at where they're from and their background’,” Meggie feels.
Meggie encourages people who have been diagnosed with narcolepsy to contact SOUND (Sufferers of Unique Narcolepsy Disorder), a campaign group set up by parents of children who have developed narcolepsy. The registered charity provides support for 87 Irish families who were diagnosed with the chronic condition after receiving the vaccine. SOUND wants the State to provide a pathway for the children and young adults with narcolepsy to move through life without each having to be assessed on an individual basis for supports they require.
“Sufferers my age, younger and older all connect with each other through SOUND. It’s also great for parents and helps them understand the symptoms of narcolepsy. Because it's an autoimmune disease you might not know if what’s happening to you is narcolepsy, so it’s a good little support system. The members of SOUND will help you - you’re not alone,” Meggie adds.