Narcolepsy

Advise on not feeling ashamed about your disability when disclosing it?
I think i overcompensate by minimising narcolepsy's effects on me and by trying to over prove myself. #MentalHealth #Narcolepsy #InvisibleIllness

I am mostly doing ok. I have a compromised immune system so I have been self isolating since Covid started. I have lupus sle, fibromyalgia and narcolepsy. I am struggling with the desire to just be “normal” again. I never thought I would miss seeing people! It got worse when I was in a motorcycle accident. Both of my shoulders were broken and now there are a lot of things that I struggle to do physically. The accident was in June of 2020 and I am still in physical therapy. Luckily my right side wasn’t damaged as badly as my left. I have a plate and ten screws on the right, and my left shoulder is titanium now. My left rotator cuff was pretty well mangled. I have about as much range of motion as I am going to get. I am still working with one and two pound weights. I’m just feeling a bit isolated and whiny.

I’ve had a really hard time these last couple of years with #Hypersomnia / #Narcolepsy symptoms, so I finally went to a sleep doctor. My insurance won’t cover an in-clinic sleep study, so I had to settle for the home study, which was NOT accurate in terms of sleep efficiency and sleep latency readings, but said that I *barely* have mild sleep apnea, and only on my back. Apparently, “true” hypersomnia and narcolepsy are extremely complicated to diagnose, even with an in-depth sleep study.

So, my doctor and I explored all the options:

-sleep aid at night: already tried it, and doesn’t solve my excessive daytime sleepiness

-wakefulness aid: (ie: stimulants) can’t prescribe due to my tachycardia

-sleep position therapy: keeps me from sleeping on my back, which is the position recommended by my previous physio for my back/hip pain

- mouth guard: probably won’t work, due to my lack of teeth, and is currently out of my budget

- CPAP: complete pain in the butt and expensive, and a bit overkill for the “borderline” sleep apnea diagnosis

- Scheduling: what I’ve been trying to do anyways, but doesn’t work, because I get so dang tired at random times and my kids and I have things to do.

I’m feeling so stuck and frustrated, because I just want my frigging life back! I want to have the energy to do all the things I’m supposed to do, and I was really hoping this might hold some answers.

#SupraventricularTachycardia
#Fibromyalgia
#Spondylolysis and Spondylolisthesis

Plans

So used to being broken
Don’t know how to be well
Now my brain is healing
Negative thoughts shouldn’t dwell

Yet the more I try
The more I feel I fail
Rather like a dog
Trying to catch her tail

Round and round I go
Endless broken days
Try to do my part
But end up in a daze

The more I sleep
The more tired I get
Though I fight awake
Sleep conquers me yet

I push through a day
Pain fills every move
Know it’s my fault
I have everything to prove

I can do this thing
I try to believe
But my past mocks me
My memories retrieved

No energy to try
Lest I fail again
Tired of fighting
Wishing for the end

But the end eludes me
My kids need me here
I have to keep trying
Can’t give into the fear

Something must change
Though I don’t know how
I have to do something
It has to be now

I’ll make a plan
Just another in line
And maybe somehow
I’ll stick to it this time

I just can’t give up
Can’t sit here and wallow
Think what I’ll regret
When I look back tomorrow

-Me

#ADHD
#Depression
#Anxiety
#BorderlinePersonalityDisorder
#Fibromyalgia
#Narcolepsy
#HypersomnolenceDisorder

What is something positive that you could share with a chick that needs to feel a little more upbeat? I want to get out of this funk so much. Anything POSITIVE or encouraging or motivating is welcome. Or if you need to vent, that's okay, too!

#Anxiety #Depression #BipolarDisorder #Bipolar1Disorder #ChronicPain #PosturalOrthostaticTachycardiaSyndrome #LivingWithPOTS #Narcolepsy #prolactinoma #sibo #smallintestine bacteriaovergrowthsibo #RaynaudsPhenomenon #LeukocytoclasticVasculitis
#SpinalStenosis #Lumbarfusion #SpinalFusion

Hi, my name is RiverGirl. I'm here because my mental health is in a slump.

#MightyTogether #Lupus #fibromyalgia #narcolepsy

I’m a mom to 3 kids, now 5, 8, & 9, and have had depression since childhood. I’m not the mom I always wanted to be, but I do the best I can. I’m on medication that helps a lot, have been through a lot of therapy, and still see a therapist every 2 weeks. It’s hard to even get out of bed and do the least that needs to be done. However, I just lost my grandmother, who raised 6 kids, while working as a teacher and taking care of many people in their church, as her husband was the preacher (leader) of the church, and that was expected. She was the kind of person everyone loved, and she loved people and took care of people with everything she had. Her children adored her. She wasn’t perfect, but she did everything with her whole heart. I realized, as I watched her die this week, that I wanted to be like her, to the best of my ability. If I were to die, today, my legacy would be that I slept too much, and couldn’t do anything productive. I don’t know how to do what I need to do, but I can’t let myself waste my life like this, either.