I have a friend who has a little boy with a disorder I have never heard of. She has explained how those, who have no idea what the disorder is, makes rude comments or statements that upsets here. So, this brings me here.
Before you talk about anything, please know the topic you are talking about or at least know what the person is dealing with before you judge them. So this brings me to my life and helping you each understand a bit more about me. I have narcolepsy. It is something I will have to live with. (Along with many others, some worse than others).
I'm sorry this may be long.
But it's good if you understand.
I want to take a moment and help educate people on Narcolepsy. Let me begin with saying that Narcolepsy does not have a cure. I live with this disorder everyday and will have to the rest of my life.
NarcolepsyA quick summary, narcolepsy causes periods of extreme daytime sleepiness and may cause muscle weakness. Most people who have this disorder have trouble sleeping at night as well. Some people who have the disorder fall asleep suddenly, even if they are in the middle of talking, eating, or another activity. ( I will talk about my life and how it has affected me since being diagnosed.)
It can be improved by medicines, lifestyle changes and other therapies. For me, the way we have found to improve the symptoms is through medication.
Now narcolepsy can cause Cataplexy, hallucinations, and sleep paralysis.
- a condition that causes sudden loss of muscle tone while you're awake. It can affect the whole body or just certain parts. If cataplexy affects the hands, you may drop what you are holding. Strong emotions often trigger this weakness, it can last seconds or minutes.
- Vivid dreams occur while falling asleep or waking up.
- Sleep paralysis
- prevents you from moving or speaking while waking up or sometimes falling asleep. It usually goes away within a few minutes.
The two main phases of sleep are non-rapid eye movement (NREM) and rapid eye movement (REM). When most people first fall asleep they are in NREM. After about 90 minutes of sleep, most people go from NREM to REM sleep.
Dreams occur during the REM phase of sleep. During this phase, muscles normally become limp. This prevents you from acting out your dreams. People who have narcolepsy often fall into REM sleep quickly and wake up directly from it. As a result, they may have vivid dreams while falling asleep and waking up.
Hypocretin, a chemical in the brain, helps promote wakefulness. Those with narcolepsy have low levels of this chemical. However, it isn't well understood what causes low levels. Researchers think that certain factors work together and cause a lack of hypocretin. These factors may include heredity (which is where I fall under), infections, brain injuries, and autoimmune disorders. (autoimmune disorders occur if the body's immune system mistakenly attacks the body's cells and tissues).
Research is ongoing on the causes of narcolepsy and new ways to treat it.
Narcolepsy & My LifeIt's been a year and a half since I was diagnosed with narcolepsy. I remember the it like it was yesterday. I fought horrible heads for almost a year with no answers! It took one doctor sending to a sleep neurologist. He did a sleep study and day study. It was horrible. I had cords galore attached to me. (I remember thinking how can people sleep with all of this attached to them). Well, a week or so later, I went in for results. The doctor explained I have narcolepsy without cataplexy. This means that my body can still function while in an episode. However, I have family with cataplexy & it can get worse.
After diagnosis, I did my research. I went through the the grieving phases. "This can't be right?" "Why me?". I went through denial, resentment, acceptance. I couldn't believe I will have to be on medication the rest of my life. You look at me today, I am fine, I'm a normal person. But what people don't understand is the struggle I have to deal with. Without medicine, I can feel multiple episodes often. Or having to making sure I get a prescription before I run out.
When I go anywhere, the medication has to go with me. I have an alarm that goes off everyday at 2 pm. When I'm with people who don't know, they ask why do you have an alarm. I respond it's to remind me to take my medicine. Then I usually receive a look with why do you take medicine. I usually answer, it's to help prevent my episodes of narcolepsy. Either then, they say "oh you have narcolepsy? (you don't look like you do) Isn't that where you fall asleep." or "so you have to take that? Why do you have to take it? Can't you stop?"
So I'm here to help educate you.
If I don't take my medicine, I will lose my license. Or if I don't have an alarm set to remind me to take my second dose; there may be a time where I'm driving and have a few seconds of an episode.(I do not drive if I feel tired or I pull over when I start to feel as if an episode may happen) A few seconds is enough time to have an accident. I can still do my normal activities and daily responsibilities.
There was one thing that upset me and I have accepted it for the better. When I was diagnosed, I had already finished my Associates Degree concentrated in Criminal Justice and partially in my Bachelor's. I had so many options after graduation. Well, now being diagnosed with Narcolepsy that has cut my job choices.
On a brighter note, I have learned to love myself. I have learned the feelings of what an episode feels like or the oncoming of one. I know my limits. This means, now that I know the symptoms before an episode, I am able to react in the necessary environment, like pulling over when driving if I feel the symptoms. Even though this is a lifetime disorder, I would rather now live with it than without it. It is something that makes me me. I have the possibility to educate people now. & That is just what I do :)
(Thank you for following along and sorry it was long)
If you have any questions feel free to ask please :).