Jo's 106km Isle of Wight Challenge

UPDATE
Thank you everyone for your kind words of support and generous donations.

I completed the challenge in 23 hrs 31 minutes, crossing the line at 8.31am on Sunday morning.

I'm so pleased it is over ...everything aches! :-)

Thank you all xxx

I am walking 106km (66 miles) around the Isle of Wight starting at 9am in Chale on Saturday 29 April and, hopefully, finishing early afternoon on the Sunday. I will be walking continuously through the day and night to raise money for Narcolepsy UK.

Narcolepsy UK is a small charity whose objective is to provide relief and aid to those living with narcolepsy.

Our beautiful daughter, Amy, became ill in 2019 following a viral infection. She was suddenly falling asleep all the time, unable to sleep at night, falling asleep in lessons and unable to concentrate. She was also dropping to the floor and slumping over her dinner when laughing or annoyed and because of this sudden dropping, and fear of when the next drop would happen, she needed to use a wheelchair. She stopped being able to do the things she loved, such as participating in sport or playing the piano.

Due to delays with appointments over lockdown and not recognising the symptoms, we continued to be perplexed by Amy's sudden change. It took a google search to eventually notice the similarities with narcolepsy. I was very lucky, the GP I spoke to agreed it could well be narcolepsy and we were sent for a sleep study at the UCLH and finally, in mid-2021, obtained the diagnosis of Narcolepsy with Cataplexy. We then started a new journey of trying various medications to find a combination that helped reduce symptoms.

Narcolepsy UK was there to guide us and help us through this difficult time.

Narcolepsy is a rare, incurable neurological condition that affects the brain's ability to regulate the normal sleep-wake cycle. In most cases of narcolepsy, there is a loss of neurons that produce hypocretin (also known as orexin), a neurotransmitter that plays a central role in the regulation of your sleep-wake cycle. The damage is thought to be the result of an autoimmune response arising from a combination of genetic predisposition and an attack on the immune system (by a pathogen like the influenza virus or, in rare cases, vaccination).

The symptoms of narcolepsy include:

• Daytime sleepiness - the irresistible, overwhelming need to sleep during the day at inappropriate times
• Fragmented night-time sleep - nocturnal sleep involves numerous awakenings
• Sleep paralysis - waking up and finding you are unable to move, often accompanied by terrifying hallucinations
• Cataplexy - a temporary involuntary loss of muscle control, in a response to strong emotions, such as laughing
• Hallucinations/vivid dreams - caused by rapidly entering REM sleep
• Sleepiness and fragmented sleep leads to problems with memory and ability to concentrate

It affects all aspects of your life, such as education, employment, ability to drive/travel independently and can have a detrimental effect on relationships with family and friends.

As you can imagine, Amy has experienced a very turbulent time trying to navigate life as a teenager, especially during the pre-diagnosis stage. Not knowing why you are experiencing these symptoms leads to increased confusion and, even after diagnosis, it can take a long time to come to terms with how to manage your new way of life, however, with the help of medication and increased knowledge, the future for those with narcolepsy can be improved.

Amy is now looking to the future by starting a new college course in September, working part time in a shoe shop and has been able to return to playing netball. She still gets tired at inappropriate times and is still affected with the above symptoms, especially cataplexy, but these challenges, and future challenges, now seem a little easier to navigate.

As a mum, I would dearly love to eliminate narcolepsy from Amy's life. Sadly, this is not possible, but I can participate in a challenge that can help raise valuable funds and awareness for Narcolepsy UK. With these funds, they can continue to operate and be there to help the next family that are suddenly going to find their world turned upside down by this awful condition.

If you are not in a position to sponsor me, and I completely understand if this is the case, then please do just send me a message of support on Saturday or Sunday - your support will spur me on to get to that finish line!

Thank you for taking the time to read this!
Jo x