Narcolepsy

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.

Hi, my name is WiseCat41. I’m here because I’m having a rough day. I was finally diagnosed with multiple autoimmune diseases in a whirlwind six weeks after being extremely ill with pneumonia. Now, I’m sick again with the flu, and it feels like the bad days are outweighing the good.I’m worrying constantly—about work, taking care of my 5-year-old son, and trying to be a good partner. Honestly, I feel like I’m failing at everything.I know I’m not alone in this, but it’s so hard to see a way forward right now. How do you find balance or just get through when everything feels like too much?#newlydiagnosed #HashimotosThyroiditis #Narcolepsy #RheumatoidArthritis #CeliacDisease #Parenting #Roughday

Hi, my name is Basket. I've been diagnosed with
Addison's, Narcolepsy, ME/CFS, Fibromyalgia, POTS, Psoriasis, IST plus more :).#MightyTogether

Hi, my name is mackvinyl. I'm here because I was asked to try to find more resources and stuff to make you feel better.But I don't really know how this is going to help

#MightyTogether #Anxiety #Depression #PTSD #AutismSpectrumDisorder #Narcolepsy #SleepApnea

The guys has the parts in his shop and he is coming out to try and fix the back of my new wheelchair seat. On the other hand, I don’t have sleep apnea but I do have restless leg syndrome and possibly Narcolepsy. As a result, I will just keep doing what I am doing until my next appointment. Thank you for the prayers. Oh and I am really glad I have a quite weekend coming up because I am going to need it.

Hi, my name is Georgie. I have atypical Hemolytic Uremic Syndrome.
I'm so happy to find a place where someone else may have the same disease I have. I'm 69 yrs old and didn't know I had this disease until September 8,2020 when I had my first attack. We still don't know what caused it. I will admit it was terrible an I live in fear everyday. I try to tell myself that I am strong and can do what I enjoy. Sometimes it works,so I get my wood working tools and start sanding or cutting a piece of wood to make something or to turn a old piece of furniture into something I love and can use in my house. I made, with the help of my son, it was a very heavy solid oak chest of drawers, that is now my coffee bar my kitchen. I took the drawers out, cut and fixed solid pieces of wood for baskets to slide on inside it. I really love it. Doing things like that is what my daddy taught me to love. I love fishing and camping as well. I guess you could call me a daddies girl. He isn't with me anymore. I've been married for 50 years and 9 months to the only other man besides my daddy, that I have loved. Well, I also have narcolepsy and ADHD.That's me. I'm extremely feminine and love everything girly too,but let me set by some water with my pink fishing pole with flashing lights when I real in a nice bass, that's the true Georgie. Nice to meet ya'll.
#MightyTogether .

Hi, my name is Karenhorses. I'm here because I'm feeling so lonely even when I'm around others. I was forced into disability retirement, covid hit, my husband has a career and narcolepsy. my best times are mornings till 3. When I'm totally alone. I have zero heat tolerance and live in Arkansas.... so Summer has been hades,literally! do to MS and retirement, covid, I've lost touch with even acquaintances. Is there anyone out there?

#MightyTogether #MultipleSclerosis

Hi, my name is VermilionClownfish7. I'm here because I had what I can only call a flashback of something and a body memory that I can't make sense of. I knew when my Mom had passed, I would have some stuff to process that's been pushed way down deep my whole life. I want to hear other people's experiences if when something repressed, starts coming up from the deep dark place where it was hiding.

#MightyTogether #PTSD #Narcolepsy

This has been a long time in the making and while i’m happy i can’t help but to think, what now? what is next for me? will my partner stop being upset with me for sleeping long hours and falling asleep during things? will my doctors up my meds? will my job finally give me accommodations? what’s next? #Narcolepsy