More About Me
How has life changed since your diagnosis?
I felt empowered to begin with, when I received my diagnosis, as it proved I wasn't just being lazy. I was warned by several other people with narcolepsy, that once the diagnosis sinks in, I could experience anxiety and/or depression. At the time I was already suffering with both conditions.
I have never seen myself as disabled. But, when I informed my work of the diagnosis, I had to go to an interview with OH. Some of the questions and concerns raised by work to the OH made me feel helpless, incompetent, quite frankly made me feel disabled. I had been doing my job without any risk to myself or others for 25 years and as soon as I disclosed having narcolepsy, I was perceived as a potential risk. However, my work are slowly beginning to understand the disorder and are very supportive. A lot of people don't know what narcolepsy is.
My life is dominated by how sleepy I am and what I can do.
I have never seen myself as disabled. But, when I informed my work of the diagnosis, I had to go to an interview with OH. Some of the questions and concerns raised by work to the OH made me feel helpless, incompetent, quite frankly made me feel disabled. I had been doing my job without any risk to myself or others for 25 years and as soon as I disclosed having narcolepsy, I was perceived as a potential risk. However, my work are slowly beginning to understand the disorder and are very supportive. A lot of people don't know what narcolepsy is.
My life is dominated by how sleepy I am and what I can do.
What are you most passionate about?
My family, gardening, enjoying nature, studying are what keeps me going.
What do you hope readers can learn from your health journey?
My main topics will be lupus and the early start of the journey for a diagnosis. I have to arrange a second autoantibody blood test in the next couple of days.
My other topic will be changing my narcolepsy medication, from daytime stimulants to night time sleep aid (Xyrem). My next narcolepsy appointment will be in May.
My other topic will be changing my narcolepsy medication, from daytime stimulants to night time sleep aid (Xyrem). My next narcolepsy appointment will be in May.
Diagnosis
I've had narcolepsy since I was 4 years old in 1978, but developed cataplexy in 2007, aged 33 when I had a severe bout of strep throat which I was hospitalised for. I've also been diagnosed with fibromyalgia in November 2017 after 20 years of going back and forth to the doctor's with widespread pain.
I'm now in the early process of finding out if I have SLE, as I keep having flare ups (last 15 months, on average every 6-8 weeks) of a rash, swollen glands, aching joints, exhaustion, loss of hair and again usually accompanied with a bacterial infection in the throat or ears. I used to get these symptoms once or twice a year, starting in 2004, but now they are regular occurrences.
My first lot of bloods came back satisfactory, so I'm having to have another autoantibody blood test done. My consultant for narcolepsy suggested that people with narcolepsy generally have another autoimmune disorder with it.
I'm now in the early process of finding out if I have SLE, as I keep having flare ups (last 15 months, on average every 6-8 weeks) of a rash, swollen glands, aching joints, exhaustion, loss of hair and again usually accompanied with a bacterial infection in the throat or ears. I used to get these symptoms once or twice a year, starting in 2004, but now they are regular occurrences.
My first lot of bloods came back satisfactory, so I'm having to have another autoantibody blood test done. My consultant for narcolepsy suggested that people with narcolepsy generally have another autoimmune disorder with it.
Treatments
I am prescribed modafinil and dexamfetamine to keep me awake during the day. I take pregabalin very occasionally when the fibromyalgia is particularly bothersome.
I'm hoping to be put forward for Xyrem towards the end of the year as my consultant suggests I am the perfect candidate. I'm at maximum dosage of modafinil and dexamfetamine, but the symptoms of narcolepsy have broken through. Xyrem would help me have a deep sleep at night, making me less tired in the day, but it's an incredibly expensive drug.
I'm hoping to be put forward for Xyrem towards the end of the year as my consultant suggests I am the perfect candidate. I'm at maximum dosage of modafinil and dexamfetamine, but the symptoms of narcolepsy have broken through. Xyrem would help me have a deep sleep at night, making me less tired in the day, but it's an incredibly expensive drug.
Suzanne Jones
