Living with Narcolepsy | People of He... - HealthUnlocked La...

HealthUnlocked Latest
9,422 members132 posts

Living with Narcolepsy | People of HealthUnlocked - Meet Sherri

MarketingHU
MarketingHU

Happy Friday :-) This week we caught up with Sherri who gave us some insight into what it is really like to live with Narcolepsy - a disorder that affects your ability to wake and sleep. Have you ever felt like there is not enough awareness around a condition that you're living with? Tell us in the comments below.

"I have Narcolepsy, so it's like living with constant REM intrusions, yet waking every day feeling like I didn't sleep at all, since we narcoleptics don't get much of the deep sleep stage that's required to make you feel rejuvenated after sleep.

👉 Even with medications, treatments, and even home remedies, every single day becomes increasingly challenging since it's almost like living with a continuous, and progressive sleep deprivation. With that being said:

💃 🛌 It is frustrating when people assume that I am just lazy, when before the narcolepsy got bad, I was the busiest, hardest working person I knew, and I would give ANYTHING to be that person again.

⛔️ I often avoid making plans with people, because I know that the guilt of not being able to keep them because of a sleep attack is a lot to bear.

🚶🏽‍♀️Often times, people make comments insinuating that I look like I’m drunk, so please be careful judging people, since you would also appear drunk if you'd been living with constant and progressive sleep deprivation, as well as cataplexy (that's common with Narcolepsy), and involves sudden loss of muscle tone, often for me, my knees suddenly buckling.

🤷🏻‍♀️ Every now and then, we do have a really good day. So when that does happen, believe that we will try to take full advantage of it and get everything done that we possibly can, even if that means trying to stay up all night to finish a project, amidst a few sleep attacks.

⏰ We often find ourselves running extremely late for everything, despite multiple attempts to prevent tardiness. A general consensus that I have observed amongst the narcoleptic population regarding this phenomenon is that because when we have nothing pressing to do, that is often when we are in full, slow, narcoleptic mode, and we will drag everything out. But when it comes to adrenaline/fight or flight, THAT'S when we can roll- so I think we subconsciously wait until that final moment when that place we have to go suddenly becomes fight or flight, because we know that's the only time we can optimally function.

❤️❤️ So, on behalf of narcoleptics, I humbly encourage you all to try to have more of an open mind regarding our treatment as people and as patients. I encourage you to try to learn more about Narcolepsy if you feel like you have been experiencing excessive daytime sleepiness (since that is one of the hallmark symptoms, and narcolepsy is so often undiagnosed and misdiagnosed), or if someone you know has the symptoms, or has Narcolepsy with or without cataplexy, because it is grossly misunderstood, both by the general public, as well as medical professionals."

----

Sherri has given us consent to share her story.

----

Stories on HealthUnlocked have an incredible way of raising awareness around certain conditions, as well as inspiring people who might be in the same situation as you. Would you like to share your health journey? Email me at communications@healthunlocked.com to learn more.

xo

Leilah

5 Replies
oldestnewest

Thanks Sherri, brilliant insight to narcolepsy. I never understood it until then. :) xx

Dear Leilah, do tell Sherri thank you for her sharing. I did not know there was such an ailment as narcolepsy. I thought insomnia (which I have) and sleepiness from thyroid problems, but this is a new one.

Thanks Leilah for sharing Sheri's story tell her she is very brave and I so sympathize! I never knew what Narcolepsy was until reading her courageous story! 🙂

Hey! I have found some really great supplements that help with a total adjustment of my sleep cycle...they may help you too! You can find them in nhc.com/

Hi LeilahHU,

When I was first diagnosed with Narcolepsy, at the age of 38, it was like a sudden light bulb went on in my head. All those times I could not keep awake suddenly had a reason. All those times I was told off, or given the slipper at school for being “lazy”, all those times I was laughed at during university lectures during my first degree for falling asleep, all those times I excused myself early at social gatherings because I needed to lie down. Even when I was dating my girlfriend, now wife, her family thought it was strange I could not keep awake for long.

I am always so happy when I hear others have the condition, not because I want to hear others suffer, but because it makes me feel more normal. Apparently it affects 1 in every 2,500 people in the UK, so we are quite a rare bunch. So with a population of 66.65 million in the UK I reckon there are 26,660 of us, if my mathematics is correct. For that reason little research / medication is thrown at the subject; the percentage sufferers are not too high. Yet there is hope, and more and more work is being done now. My daughter bought me an excellent book called “Why we sleep” by Matthew Walker, and it has an entire section devoted Narcolepsy.

You probably do, but there is a Community called healthunlocked.com/sleep-ma... on healthunlocked, which I find helps.

As a personal tip, I find keeping a task list of tasks which take now more than 30 minutes helps me achieve great things; split your bigger tasks down to 30 minute intervals. I find I can keep focus for that length of time, and as it happens I later discovered it is also based on scientific findings – The Pomodoro Technique (


).

I really hope you have a great life. Narcolepsy is a minor hindrance; I have now learned to fit in to my routines. OK it is an absolute pain at times, but I can still live life, the world just has to learn to live around my embarrassing moments. The times when I walk around not knowing where I am; the times when I do not know whether I am awake or asleep; the times when I wake up not knowing how I got there; the times when I have multi-level dreams and I am not sure how I am going to wake up from them; or which level reality is on … Enough.

When I am definitely awake, I know I am definitely awake, and that is when life contines.

Keep safe and keep well.

You may also like...