Narcolepsy

Tonight I enjoyed spending time with my family at our family friend’s pool. Then we went to get ice cream at a fast food restaurant. Oh and I watched some America’s Got Talent before bed. It was nice. Now I am going back to sleep because I am finally sleepy again after battling some nighttime insomnia. I will say that all of this comes along with my recently narcolepsy diagnosis, which is characterized by excessive daytime sleepiness and severe nighttime insomnia. If only I could convince the sleep doctor to put me on a medication. There I am finally opening up about my new diagnosis!

Anytime a word they put down triggers fear or upsetting memories. So i try my best to explain why but go emotional and sometimes overboard.. Others state i keep repeating it. Or they tell me get therapy; I would but cant afford it with a lot going on in personal life...

As growing up as a kid I was told to keep my thoughts to myself and if I was bullied or teased to avoid it.. I did tell the teachers or speech therapist but i was told it was wrong of me to tatall tail? I grown to fear adults amd making friends plus open up to my family. To a point i feared interaction with my family. I put on a mask act silly or polite or try to mimic helpful behaviors or likes from family or rare friends. I would later on draw a lot of hidden fears and emotions where family saw it as a future gift.( I may skip a bit)

When I was a teen I kept drawing and tried to use my art to gain friends but some just used me for homework art projects. There teasing or bullying kept at it when growing up. More rare friends i made would give out phone numbers or birthday parties invites (which i struggled to call or remember) some friends witnessed me having narcolepsy \ anxiety in class do to stress from home or school [i struggled with school work and my late mom dislike me being lazy a lot] some of my teachers allowed me ti cheat test of some answers and gave me a jr-job as Janitor( it help keep stress down) by college i still struggled in mathematics and english to history. But loved art.

After that i found out after my mom death from cancer she cheated on my dad with his friend.. Again I wasn't allowed to over exaduwight on things - but kept it bottled up.

After i got married i shared with my husband and he shared his struggles in life with I. But overtime we're still trying to mend. But i still get triggers with my past.. and I try hard to not say anything. Yet it like a childverson of me yelling Im here I saw I heard and Please hear me? #Anxiety #PanicAttacks #TBI #Fear #Narcolepsy

Sleep Disorders: Treatments for Narcolepsy
Narcolepsy Treatments

Today my regular talked about everything and about going on a medication for helping regulating my automatic nervous system and narcolepsy. Oh and I am cleared for my surgery on the 16. Now just been relaxing and hanging out with family. Just dreading that I have to have two more ear surgeries.

My doctor’s appointment went well because we talked about everything and about going on a medication for helping regulating my automatic nervous system and narcolepsy. I even got cleared for my ear surgery on the 16th and now I am just relaxing.

Narcolepsy Management at Work

www.mynarcolepsyteam.com/resources/narcolepsy-management-at-work

Yes but now it’s two something in the morning and I can’t sleep because I slept like all evening after my ear procedure, but I reached out to the sleep doctor the other day and she is thinking about testing me for Narcolepsy. It’s weird though because I only fall asleep suddenly during the day when I am sick or experiencing something medical. This started in 2018 when I had my first ear problem. Any suggestions or advice is welcome because I need help.

Hi, my name is MamaFrog. I'm here because I was diagnosed with: Fibromyalgia, Chronic Fatigue Syndrome, IT Band Syndrome, Insomnia, Narcolepsy, and depression between 15-17 years ago. In the last 10 years, I have been diagnosed with: Sjogren's Syndrome, Costrocondritis (inflammation of the fascia over/under/around the chest wall...this feels like a heart attack. In my case, this climbs around my whole chest wall, up into the whole neck, jaws, and into both ears.), chronic headaches, arthritis (in my whole back, neck, with lower bone spurs in my pelvic region). Not to exclude the bulging disc between my shoulder blades, and disgenerative disc disease. I know... I'm a total mess ( my husband tells me this frequently! 🤣🤣)!! I take WAY too many medications (including 30mg Morphine 3 times a day) just so that I can function (ie. move my body without much pain, think clearly, sleep, stay awake all day, etc ...😬😱😭). I have many books on most all of my chronic illnesses, and keep mostly up-to-date on medical testing/discoveries involving my "issues". Today is Easter Sunday (HE HAS RISEN!!), and it's been a tough day for pain/movement/ cognizance/memory and it's not even noon yet!! I hope you, that are reading my ramblings, are ALL in a great place today and everyday!!! Gentle Hugs! 🤗 ❤️

#MightyTogether #Anxiety #Depression #Fibromyalgia

This is something I wrote today. Writing is helping me process my chronic illness.
—————
What I didn’t know I was holding:

I didn’t know

that most people don’t wake up

already tired.

That showers don’t drain them.

That joy isn’t rationed,

measured in teaspoons

of energy they can’t spare.

I thought I was normal

because no one told me otherwise.

Because my mother didn’t tell me

that pain can have a name.

Because in my family,

suffering was swallowed,

then called strength.

I learned to call it strength, too.

I smiled through fog,

walked on bones that ached like bruises,

held my breath through fatigue

that wrapped itself around my brain

and made me disappear

in plain sight.

I was praised for being capable,

for pushing through,

for carrying what no one saw

was breaking me.

And I believed them.

I believed myself.

That I was just sensitive,

or weak,

or lazy,

or wrong

for wanting the pain to mean something

other than failure.

I didn’t know

that what I was surviving

was not survivable forever.

That one day the pushing

would push back.

Now I am here.

Still trying.

But I am sick.

And I am done pretending

that sick means broken

or invisible

or unworthy of softness.

I see myself now—

not dramatic, not weak,

but someone who has been

astonishingly brave

in the wrong direction.

I am learning

how to live

without abandoning myself

in the process.