Why am I fundraising for Narcolepsy UK and how?
With my friend Liza, on Wednesday the 17th of April we will be starting our 6-day walk of the West Highland Way - a 96 miles walk. As I am no longer on any treatment for my narcolepsy, this challenge will be even greater. After Ben Nevis 2 years ago, we are now ready to take on this new challenge, which will for sure involve quite a few nap breaks!
What is narcolepsy?
Narcolepsy is suspected to be an auto-immune disorder. It is the hypothalamus (small part of the brain) that is attacked leading to a lack of orexin. Orexin is the brain chemical responsible of the sleep-wake time. Therefore narcoleptics generally fall asleep in unusual places or circumstances such as in the middle of a conversation or during a meal. Sleep attacks, or Excessive Daytime Sleepiness (EDS), are comparable to 3 days of sleep deprivation but they are not the only symptom of narcolepsy. Sleep paralysis, hallucinations or vivid nightmares, autopilot mode, 'see food' diet, and poor night-time sleep are other quite common symptoms.
At some point, 90% of narcoleptics will also develop cataplexy (I am very lucky so far!). Cataplexy is a sudden loss of muscle control and is triggered by strong emotions such as laughter or surprise. In the most severe cases of cataplexy, narcoleptics faint and despite appearances they are still conscious but unable to move or speak.
No cure exists for narcolepsy but drugs and sleep hygiene methods can help control significantly this condition.
My experience with narcolepsy
It has taken myself and my relatives a long time to come to terms with and adapt to daily life with narcolepsy. This has now been almost 3 years that I am now no longer on any treatment and with regular naps, exercise, a proper diet and lots of sleep and life hygiene methods, I am able to manage my condition better. It is always very difficult for others to understand what it means and takes to be narcoleptic so let me give you some examples.
Some examples of the drawbacks:
- My most recent embarrassing sleep attack was during a one-to-one conversation with a colleague. I fell asleep just in front of her while she was speaking to me... Thanks again Esha for not making this too awkward!
- Guess what? For our first date Stephen took me to the pictures straight after a full day work! I fell asleep within the first 10 minutes but luckily he did not run away. Cinemas are just the worst setting ever: dark, comfy and warm.
- I am well known to always be hungry and eat everything I see, the famous 'see food' diet. The last time I went out at the restaurant with friends, I finished all their dishes and clearly could not help it, which made them laugh a lot.
Some examples of the advantages:
- Exercising is great for several reasons. For narcoleptics, it helps with mental health (depression is very common amongst narcoleptics as you can feel isolated), prevent the weight gain due to the 'see food' diet and regulate sleep. Any kind of exercise requires a lot of willpower especially when you are already tired in the first place but when I do manage, the feeling of achievement is just so huge that it makes every day easier.
- I love taking the plane. For most people this is an anxious time but as I fall asleep before take off and wake up after landing, no stress for me :)
- I can have naps at work and my boss encourages me to do so, how great is that?!?!
For those who want to know more about narcolepsy and its effects on daily life, go to the charity website at https://www.narcolepsy.org.uk or simply come to speak to me. You can also watch Teddy's video which explains narcolepsy in a simple way for kids, just search 'Narcolepsy simply explained for kids' on YouTube.
How can you help?
- You can help by telling at least one of your friends/family members about narcolepsy.
Your help is greatly appreciated.
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