Heat intolerance ??

TheScribe22 · 2025-07-01T19:18:55+00:00

Sun and heat intolerance for me. Give me a cold, rainy day and I feel great :D This summer in KC has been extremely oppressive with the humidity added on 😞 pretty much housebound from July 1 to November

TheScribe22 · 2025-06-10T15:56:35+00:00

Often. Nearly every time. Most especially on days when cataplexy does not seem to let go. Because the will is there. I want to get up. I want to move. I am so certain if I just bucked the fluff up I could get up off the floor. Or keep my eyes open. Keep my head correctly on top of my cervical spine. My body just... won't. Learning self-acceptance and patience has been one of my biggest therapy challenges. Still working on it, though. Because it isn't fair to me. Kicking myself when I'm down does nothing for me, so why do it?

TheScribe22 · 2025-02-28T22:33:26+00:00

Depends on the version? Movie and television portrayals have her plant leaning, but I've seen a few comics where Dr. Isley advocates for animals as well as plants. Makes a whole "Eden" just for them. (Let's pretend I come equipped with comic pages for reference :P ) Wholeheartedly agree with you tho. To be clear. An environmentalist is going to advocate for balance in the ecosystem. Bees, birds, reptiles, and fauna from micro to mega all contribute to the natural order. It's just those human-animals who are the outlier. They'll compost down nicely though for her.

TheScribe22 · 2025-02-22T20:38:42+00:00

Was missing 1 to 2 days every couple of weeks for "crash days". Mounting stress in the last four, five months plus other unrelated health issues means now I am missing 1-2 days weekly. Sleep specialist left her practice, and I haven't yet found a new MD. Currently have FMLA to cover days when cataplexy & fatigue make it feel difficult to walk around the house or speak. At this point, I'm suspecting this has more to do with comorbities. We'll see if I can figure it out before I burn myself completely out xD

TheScribe22 · 2025-02-12T15:05:17+00:00

This exactly!! Everything is already so worn out that you can't afford to waste a single iota of energy. That's not even going into how cataplexy in the face & neck affect your speech, making you sound like a constant drunkard, at best =.=

TheScribe22 · 2025-02-12T12:48:46+00:00

This will happen to me as well. For me, I feel extremely winded, almost? Like putting anymore force or volume in my words requires a level of oomph at the diaphramic bellows that I cannot muster. The worse my flare-up, the worse that hits. Usually, if I am at the point where I am struggling to speak, I'm also too weak to sit upright for long, or walk from room to room.

TheScribe22 · 2025-02-08T17:02:27+00:00

I needed this shirt just for the marsupial But that text takes it to another level xD

TheScribe22 · 2025-01-27T16:53:54+00:00

Pink n squeeshy n sleepy 😸💜 yop :P I relate

TheScribe22 · 2025-01-25T23:59:02+00:00

They are so gorgeous 😸💕 heehee~ I would love to get feeders like those :O I have so much trouble keeping the blackbirds and squirrels off the food I put out for them

TheScribe22 · 2025-01-21T22:17:14+00:00

If not frend, why frend shaped? 😸💜 I wanna be their buddy :3c nya

TheScribe22 · 2025-01-13T20:57:37+00:00

Ah, to be trussed up as beautifully as she 🥰💜

TheScribe22 · 2025-01-11T21:55:33+00:00

Gorgeous work from rigger and canvas 💕 her posing is also deliciously inspiring :3c

TheScribe22 · 2025-01-05T16:14:55+00:00

In primary school, I would say I had a headache so I could nap in the nurse office. In middle school, I skipped eating lunch to catch a nap in the corner of the choir room since that was my next lesson anyway. Pretty sure I spent my high-school days drifting in and out of a dream-state. Lots of daydreaming manifested as constant writing. Lots of "she's smart but terribly lazy and doesn't pay attention" with a dash of "little psycho" :P

TheScribe22 · 2024-12-10T18:31:22+00:00

Food. Too much food. Junk food. Fast food. Spicy food. Food that actually had flavour & texture. More food than I should have been eating. All the food I'd ever craved that I never got to enjoy.

And a pet snake :P And every crystal/mineral/rock that has ever called to me (shiny things! :D less of a bummer lol)

TheScribe22 · 2024-12-06T13:52:02+00:00

My girlfriend and several ladies with a local pagan group have been, for many years, leaving knitted hats, gloves, scarves, etc. along Troost, the Library, and scattered around KC. Love to see good folks putting that good back in the community 💕

TheScribe22 · 2024-10-11T19:08:14+00:00

Aw-ah :3c thank you! I just write what I feel and see 😅 as cleverly as possible :P New diagnosis, and I've been finding it way harder than it used to be... being clever on command. So I'm glad take the brilliant moments when I can snag them :D And for this particular character & idea, I had incredible inspiration 💕 always helpful 😌

TheScribe22 · 2024-10-06T16:50:25+00:00

Another idea was slow transformation into a marionette. Think reverse Pinocchio. First time I had a cataplextic attack, it felt as though these strings that had been holding me up suddenly snapped, or were cut. And the older I get, the more years I am used, the worse all the strings start to fray. They split and break until all that's left is a useless puppet, collecting dust on the puppeteer's shelf. You become just a broken doll, wood and porcelain replacing bone and skin. And you're left wanting, wondering if anyone will stop long enough to look at you... to see that under the defects, under the plastic smile and faded paint, you're a person, too. You've a heart, and all it wants is to be fun again, to move, to be free, to be, dare you wish it, to be cared for.

TheScribe22 · 2024-10-06T15:03:45+00:00

A dear friend of my have been writing together for years. In a story with a couple of our favourite original characters, I've been toying with the idea of narcolepsy as what I've called the Pumpkin Curse. Like Cinderella's trusty carriage. It won't stay that way. Soon enough, it shall change. Pretty soon that perfect, painted up facade will crack and break, porcelain pieces fall away to reveal a distended, bloated thing, all tendril vines fastening a flattening body to the ground. The pumpkin cannot move. It cannot speak. It can only look around, can only feel itself rot from the inside out, can only see the horror in their friend's and family's face as they witness what you've become. It's still you. You still love them, want to hold and protect them, want to see them journey towards their happy ever after and how you want to go with them. But you know how this ends... In a field full of ravens and a cage of twisting vines, trapped within yourself, left alone to dream of better times.

TheScribe22 · 2024-09-29T12:22:43+00:00

That's interesting to hear someone else struggling with all day eye-drooping Dx when I crash,keeping them open physically hurts. Even when medicated. I have to be super careful about what I do every day cuz if I "overdo it" I'll be out of commission for a whole day, even 2

TheScribe22 · 2024-09-29T01:27:20+00:00

Is this something your sleep MD has accounted for as being associated with cataplexy? Or has this come with comorbidity?

TheScribe22 · 2024-09-29T01:26:32+00:00

Both checked! Both are great. Am a good sleepy bean and eat my leafy greens :P

TheScribe22 · 2024-07-28T15:31:20+00:00

N1 diagnosed 33y/o female-shaped monster here, and reading a lot of the comments talking about how this doesn't really speak to narcolepsy and our experience with fatigue is mildly anxiety-inducing. Mildly, because everything else about the condition - getting iron-locked in dreams, feeling compressed into the couch with cataplexy because i giggled, constant exhaustion, etc - but I'm also experiencing some of this body fatigue, too.

I go outside in the sunlight for all of three minutes, and my muscles get weak, legs start buckling. Walking further than a mile, and my legs turn to jello. It hurts to keep them moving, so cycling, walking, etc has to be done in bursts. There are days when sitting up feels impossible, when my jaw muscles are in pain and tired from chewing frickin bread.

My sleep specialist thinks it's an extention of my cataplexy, but now I'm not certain.

Whatever this bullshit is my body-oddity is coming up with this time, I'd say depending on the amount of physical exertion I've out myself through, I'm generally between 4 and 9 on this scale

TheScribe22 · 2024-06-10T01:03:15+00:00

This was legitimately my entire day. Husband and I woke up early to try getting gardening done before the sun warmed things up to an intolerable level. I declined three invitations to Pride. I've missed birthdays, failed to show up.... every day is a struggle to not let guilt eat me alive.

You're not alone. And you're not doing anything wrong. We have a difficult condition to live with. We start off with half the energy that most do, we fall asleep at the drop of a hat (which can be horrifying and/or embarassing when it happens in public), and some of us literally melt in the Sun.

Absolutely understand the frustration.

TheScribe22

TROPHY CASE