VENT: How are you doing? (Honestly)
Life with narcolepsy can be challenging.
This is a safe space to vent about what's happening with you. How are you doing?
Okay here is my rant... I have been diagnosed with narcolepsy type 2 since 2014 with a pulmonologist. It got worse in 2016 after a car accident. So, I got retested by a different doctor who is a neurologist (that's who I currently have my appointments with).
I had to give up my job that I liked, because it involved traveling a hour or two from home at times. Moving past that I haven't had a job since. Which puts our family in financial stress at times.
Then a few years back (2 or 3 years ago). My doctor told me they have tried all the options available to me and now I have to make changes in my lifestyle myself. Exercise (as if I had the energy for that); I know I am overweight and could use it, but then I don't have energy to do much for the house work.. Also better sleep hygiene, which I try to do, but my spouse says I need to do better and points out why that's why I am unreliable and unmotivated.
I am also dealing with my 19 year old (who has ADHD and possibly Autism) who has worked since they were 15 calling me lazy or that I don't do anything. Partly, I think, because my spouse (who also is believed to have ADHD) has said those things. I hate feeling tired or having brain fog and being told and feel like a disappointment.Hey thank you again for replying to one of my posts. I have mentioned how it feels; but I believe that's as far as it goes. I don't believe they are open to knowing more. I have mentioned information and I also showed my spouse the spoon theory (I relate to that in terms of energy.) I also am on 3 different medications for my narcolepsy and on other medications for other issues I have. I resonate with your story. My wife is more understanding these days, but it does get to her from time to time. I know I'm not lazy. I know you're not, either. Living with family whom practice deliberate ignorance or lack empathy for our new way of being js rough. It's gotta be rough on them, too. They take it too personally. It isn't as though you chose this life. The sleep life chose you. I pray that they find clarity 🙏
Hi
. These dream creatures are priceless! I wish they could earn you some of that good, solid sleep you crave. How wonderfully detailed and creative. Have you ever considered using any of your journal entries toward publication of some sort? Maybe as poetry, science fiction, fantasy or short stories? Sending the best of all wishes for quality sleep your way. - Lori (Team Member) I want to some day. I hope you do. - Lori (Team Member)
I tried to nap earlier today. I put on my blackout sleep mask, as I normally do to prevent visual hypnagogia/hypnopompia. Normally, I'll only see vague black and white swirls until I fall asleep. This time, it's instant hypnagogia. I was "seeing" straight through my sleep mask. All my actions were being interpreted through my visual cortex. I could still see my hands and everything, just in black and white.
A near-perfect representation of my room was being overlayed in black and white. I've trained myself too darn well in dream control that I was doing it in hypnagogia. I ended up transitioning into a lucid dream from here where I interacted with a copy of myself. My copy dismissed me as a hallucination and wouldn't take me seriously 🙃. That's a subconscious response I've purposefully built.
This went on for about an hour, which felt like hours. I'm still so tired. I can never get enough sleep, and I have no true way of expressing this life to people. "You need to get your eight hours. Try going to bed sooner. Change your diet. Try exercising." I've gotten one night of restful sleep in the last five years and I cherish it like a novel trophy; only a memory of a subtle victory. I don't know how it happened, but I hope it happens again. I sure could use it.
I make the best of my situation by dream-logging and sketching out some of my more interesting dreams. Here's a creature that I had the lovely experience of meeting in my dreamscape. This is not the dream-log, but context derived from the dream about the creatures.
"This is an Antoptopod (Primarily terrestrial)Known others: Agrisoptopod (Aquatic variant)
I had a rad dream about these big guys. When I was a child (in the dream), I called them Star Bugs.
They're about the size of a small dog when they're born, and grow to the size of a small SUV. They are sentient creatures and communicate through clicks and body language when they're young. They have circular mouths and can imitate sounds. They will put their legs together in pairs while resting/sleeping and cling to walls and trees.
Antoptopods have a hard, chitinous outer shell. Their underside is akin to the softer flesh of a rhinoceros. At the base of each appendage, there are sensory organs that assist with general awareness.
Agrisoptopods lack these sensory organs. Their shells shine with beautiful, metallic, glittery hues of natural greens and subtle blues. What they lack in physical awareness, they gain in intelligence. They have evolved to communicate with telepathy. Their shells are much softer and rounded, and their appendages have adapted by becoming flatter, like dolphins fins. They swim in the resting position, extending their front appendages in a diagonal scooping fashion, then kicking out their rear limbs in pairs simultaneously. It looks quite graceful."
This is my life. My new way of living, and it's only one part that I've had to adapt to.
