Every month, every week, every day is dedicated to spreading awareness about something.
When I think of October, I think of Breast Cancer Awareness and the pink ribbon that has become to be recognized around the world.
May is Lyme Disease Awareness Month 🙂
And here we are in National Kidney Month of March, as I have always associated it with- but now also think of National Sleep Awareness Month.
Living with Chronic Lyme has caused me to develop several sleep disorders. I’ve found this to be the most difficult part of Lyme to deal with and for many reasons-
After 3 sleep studies and nap studies, trying an infinite amount of medications & going to one of the top hospitals in the U.S. for sleep disorders, has done very little for me.
It didn’t take long to diagnose the chronic fatigue and excessive daytime sleepiness but it did take several years to also figure out I had narcolepsy. Many said it didn’t matter, for they were treating my fatigue the same whether or not I had the diagnosis (which they were for the most part- but it mattered more so for insurance purposes, of course).
I go through periods of hypo and hypersomnia- sleeping very little, to days at a time- but one thing remains the same- I’m ALWAYS tired.
The horrible side effects of the medications & negative social stigma that surrounds it, makes it so much more difficult to deal with. It’s hard to explain that simple tasks such as getting up out of bed, getting dressed, going to a doctor’s appointment or just running errands is extremely exhausting. Many times, I don’t have the energy to go out or even get out of bed. The Spoon Theory has helped me understand what I go through myself and how explain it to others.
As I’m writing this post right now, I’m having what I call one of my “sleep attacks”–I’ll have to edit it later but want to post what I can for now.
I can’t explain exactly how a “sleep attack” feels, but it’s like a wave of tiredness that all of a sudden crashes over you- this tells me that I’ve waited too long to take my medicine (I take short acting stimulants, while others take some that are extended release and some only take a medicine to sleep at night- one of many misconceptions of narcolepsy is that it causes insomnia.
The misunderstandings of narcolepsy & chronic fatigue can sometimes really get to me. Sometimes I get frustrated or upset, but try to remember that it’s not an issue people are educated about (at least I found in school- being a public health major) and if they are, is not something that’s easy to understand.
– Just because I’m tired, doesn’t mean I’m lazy.
– I’m not going to fall asleep in the middle of a conversation with you- my condition is managed as best as possible- and I don’t have narcolepsy with cataplexy, just narcolepsy.
– I can and am able to legally drive. Like anyone else, if I feel tired or have waited too long to take my medicine/waiting for it to kick in, I pull over. This usually only happens if I am driving long distance- which is something that I have to plan out ahead of time too.
– If I get some fresh air, it won’t wake me up.
– If I “just get moving” that won’t wake me up either.
– Sometimes when I’m so tired, it’s painful.
– If I slept 4 hours or 48 hours, I would still be tired- for I don’t get quality sleep- it’s not about the quantity.
– I feel tired and achy (due to fibromyalgia) all the time, even if it may not seem like it. Many people learn to hide it (as best as they can/when they are able to).
In honor of National Sleep Awareness Month, please take the time to learn about chronic fatigue, narcolepsy or any sleep disorder