Good day to you all of my comrades out there in internet land*! (*not an actual place)Here are the moments in the day when I have great joy! the kids and husband are both still asleep and I have been up since about 3:30am, trying to get my body & brain to keep resting. Now is when I am not fighting the horrid monster I call narcolepsy all that much. When I first wake up I am chipper, full of energy and usually pretty happy! Also, this is when I tend to try to do something I really have been wanting to do, such as write my blog, make some breakfast, watch a show, or play a game. However, usually about eh, 45 minutes into this flow of energy, I completely crash! I get overwhelmingly sleepy, my eyes start watering & burn to keep open. The thought that I must sleep starts getting PAINFULLY loud.
Unfortunately this is just about when my kids wake up & Paul comes around, ready to go work & I'm stuck in this zombie-like funk for a few hours. Usually I try to just catch a few winks right before the crowd arrives by ending early, but some days I don't really even bother trying to do the thing I want. I just laze for a a bit and casually sleep & snack & do this or that until they wake up.
Now please understand, this is when I am on medicine. Medicine you say? Well, let me explain. Being narcoleptic, I basically have a brain that doesn't work right! haha! See you knew I was kinda nuts didn't you! Well now we have proof! LOL When I was 12 years old, my teachers called my grandparents (who were raising me at that point) in for a conference. The particular teacher taught reading. I LOVE reading & Miranda (my ultra-awesome BFFL) was in my class. We're talking 8th grade people! My hormones were not nice to me and the sleep disorder was coming into full swing.
Regardless of the fact that my chatty friend and I (what 12 year old girls aren't chattie?) were closely seated, I was always falling asleep in her class! The teacher suggested that they check up on me. It was quite comical because the teacher accused me of "staying up all night playing Nintendo by telling my grandma that I told her I was doing it! My grandma kindly responded that we didn't own a Nintendo I'll never forget the look on that teachers face. She turned about 30 different shades of red! Thus started my life a a narcoleptic guinea pig!
Wait a minute?! What was that? Why would I call myself a guinea pig? Well, let us just say that in 1995 there weren't too many 12 year olds diagnosed with Narcolepsy, let alone treated for it. Narcolepsy wasn't a main stream illness at that time. None of my teachers knew what it was, nor my parents, nor my friends, nor half my doctors! I was diagnosed as a "textbook" case of Narcolepsy though. Numerous sleep tests later, they said I basically fall "asleep" less than 15 seconds after the lights go out & then I re-enter the sleep cycle over and over again all night long, never finishing any of them.
It basically was explained to me that I have a brain that thinks that the hormones are released to tell me to sleep correctly, are actually foreign and so they attack them as well as the place where they are released. Many studies have shown that the longer you have Narcolepsy, the worse that receptor becomes damaged.
So basically, long story not short, When I sleep at night, it's in short spurts, (maybe 20 mins if I'm lucky) and never is it actually restful. I usually have Night terrors all night long, including sleep paralysis. Night terrors is well known in infants and small children, however, it occurs in narcoleptic's frequently because the brain doesn't realize it's dreaming & processes them as real. Hypnogognic hallucinations are especially frightful because they are dreams you have when you are waking around in broad daylight, fully awake, but your body thinks you should be sleeping!
It is all very scary to say the least. Growing up as a teen, it was horrid. I was always on edge, paranoid, and afraid to sleep. The medications that they kept putting me on were a combination of stimulants & antidepressants. The doctors honestly had no clue what they were doing and were giving me apparently illegal dosages of drugs like "dexedrine" "adderal" "wellbutrin SR" etc. Not all the meds were overdone, but enough were that I have permanent dry mouth, I struggle with memory loss, & have issues with dependency on some medications if I take them too long. I even suffer from drug tolerance which means I can't take a medication for too long because my body gets used to it more quickly than normal.
All that being said, Now I have been given a great doctor by God alone! He has been such a help! He has explained so many things to me about Narcolepsy and helped me find out what works best for me! I also have found an anti-anxiety/anti-depressant which works to help alleviate my chronic pain, fibromyalgia, and overwhelming coping issues based on my lack of sleep. Could you imagine how you would feel if you LITERALLY HAD NO CHOICE but to stay awake every night for all of your life! All you would get is a quick 20 minute nap every now and then but while you attempt that nap, you have to also watch a tv which would constantly play some kind of graphically morbid horror flick?!
Paul said to me yesterday, "The only thing I can't wrap my head around is that you have choice. " Puzzled, I asked him to explain. "Well, I can choose to stay up a few nights, like an idiot, & have to deal with the tiredness the next day, but I had the choice. You don't. You cant' choose to sleep, you just don't have the choice, yet you still have to deal with all the tiredness."
It encourages me that God gave me such an awesome husband. He has shown me things about myself that I would have never been able to put into word! Such as, the fact that I really am a clean freak, but I just have so little energy that I end up getting frustrated and taking it out on others by #1 expecting them to do it and #2 sounding demanding or frustrated with people when I ask them to do something I can't! He nailed it!
In life it's so true that I have so much I know how to do, want to do, and CAN do! But I don't have the ability to do it because my brain doesn't give me the option. There are days when I feel like a giant waste of space. I just get so tired of felling like I'm a burden to the my husband. I also feel churches will never really understand or care about people with disabilities or special needs. While I know not every one can understand or minister to people with invisible illnesses, I feel sometimes, like it's me who is invisible.
On a closing note, thanks for reading my blog! I'm sure it's been a long read this time! Sorry about that. I am blessed and find great joy in my family and especially my husband who goes out of his way to be supportive and caring. I love you Paul. Thanks for being my one and only, always and forever! (Come what May!) I know that no matter what happens, we're going to make it!
Blessings,
God's Beloved Angie
