Narcolepsy

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

Hi, my name is StoicStingray7007. I'm here because

#MightyTogether #Anxiety #Depression #BorderlinePersonalityDisorder #Migraine #Fibromyalgia #MultipleSclerosis #PTSD #EhlersDanlosSyndrome #IntracranialHypertension #Narcolepsy #MitochondrialDisease

Hi, I am always looking for new ideas or suggestions for treatment for Narcolepsy, I have struggled to find the right treatment since I also have insomnia and restless leg syndrome. Since the first of the year my insurance company for prescriptions which is new again this year, has decided not to cover the medication I have been taking during the day to help with my daytime sleepiness. I have been taking for approximately 4+ years and works the best for me. It is so frustrating. I feel like I am starting all over again.

#Narcolepsy #Depression #Anxiety #Insomnia #Fibromyalgia #Migraine #RLS #GastroesophagealRefluxDisease

Hi, my name is Chance.
I enjoy reading articles from THE MIGHTY so i figured I might see what else is here.
#MightyTogether #AutismSpectrumDisorder #Narcolepsy #dissociativeamnesia #Dyslexia

I want to say, I have been MIA for a while. Because I feel as though If I don’t stand for what I have then they won’t listen. I will not let them keep sweeping my auto immune disease under the rug. I don’t care if they don’t see it. It’s here and in full effect and in full swing RIGHT NOW!!! If I feel ok I will look like it . But if I can’t comb my hair and I got appointment well Mufasa is what you get! Everyone knows that I don’t like to be noticed but since I have tried all the fibromyalgia meds and it made me worse than when I was on nothing because I have chemical sensitivity and noise sensitivity and skin sensitivity and whatever else chronic fatigue chronic pain chronic & sensitivity Everything I say! Now I’m at the point that Life is to short to be mad or Angry Just get your medical card get your head high and go and if you can’t remember there always tomorrow and you can always make someone else smile even if you are having a bad day it does the heart good ! I laugh at myself all the time. I know who I and I love me and most of all I love people and no matter how much or how bad I hurt I always go out or when I do go out I make sure I say a kind word or say some encouraging words or help someone or somebody or smile or if I can sum up enough energy I would do a little dance for the little old ladies at my physical therapy session I been going to for almost a year. Just to crash when I get home but my little show make them have something to look forward to coming back.
#Fibromyalgia #Narcolepsy #ChronicFatigue #ChronicPain #Autoimmuneillness #nocure #YouCanLaughAtYou

I’m getting discouraged on leaving my narc husband again. I’m probably just gonna come back anyways. When I think about living without him it just doesn’t feel right or possible. I understand it doesn’t make sense and it isn’t logical. I understand I need to leave. But sometimes we have good times and he makes me live for those breadcrumbs that when I get them it’s hard to deny them. It really is like an addiction. I am addicted to that tiny little hit of oxytocin he gives me once in a blue moon when he pretends to care or bond with me.

I feel like such a fool. Most people come back and leave several times. I can’t do that. This has to be the only time. That’s a lot of pressure. It scares me the idea that I will come back and it’ll be much worse and he’ll hurt me. I am terrified that there are still parts of me that are still unlovable. I would say that most of the time I do love myself, but there are still parts of myself that are ugly. Things I do that I know he accepts or deals with that I don’t know if other people would put up with. He often tells me no one else would put up with me.

Like how I binge eat til I’m sick when I’m low on dopamine
or how sometimes I don’t bathe for days or brush my teeth or change my clothes when I’m exhausted or depressed
My bipolar I have other embarrassing disorders I don’t like talking about
My god awful OCD. I’m a germophobe and I have lots of arbitrary rules that him and myself have to abide by or else it’s very upsetting for me. And he mostly puts up with it I think more than I notice
I have narcolepsy and sometimes I’m so tired I can’t even stand or feed myself it’s actually pretty common I need help feeding myself. I feel like such a burden but there’s nothing I can do about that. He cooks for me a lot or gets me food
I have a lot of trauma, still some unhealed
I can be a very anxious hypochondriac

I’m scared of never been known or loved again. I know he doesn’t love me, but it’s all I’ve ever known we got together very young and it’s comfortable somewhat and familiar. I’m sure this feeling is fleeting. I think it’s in reaction to the fact I will be talking to lawyers this week.

#Abuse #PTSD #MentalHealth #Anxiety #ObsessiveCompulsiveDisorder #BipolarDepression

I recently saw a new neurologist, hoping she would find a connection between my neuropathy and my fatigue. Instead she thought the fatigue might be related to my sleep apnea, which I thought was fully treated by my CPAP machine. She put me on Provigil, a stimulant used for narcolepsy and sleep apnea. It seems to be helping my energy, but unfortunately doesn’t change the fact that I often don’t realize how much a particular activity is taking out of me until afterwards. I have worked hard to find the right balance between activity and rest. Now it has changed, and I am going to have to learn my new balance by trial and error. Recalculating!!!