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For someone who loves to sleep, you'd think I'd be able to

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Noooo don't say it out loud! Your body will come up with a secret new limit for you to reach 😩

I'm excited to announce that I have just about reached my limit.

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I was recently diagnosed with hashimotos, what is a spoonie? I see the term everywhere

Sorry you have to join the club, but welcome! A spoonie is anyone who can relate to The Spoon Theory, which was written about the day in the life with someone with a chronic illness. <3

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how are you feeling right now? please reply in gif form

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Cool idea! (you had me at "ooh math.")

With symbol | without

(Too tired for image description, sorry)

Here’s my take on a Hypermobile Ehlers-Danlos Syndrome (hEDS) pride flag.

The dark blue and off-white stripes are meant to evoke zebra stripes, a popular symbol for EDS. The center stripes are teal and purple, two colors associated with the condition, and the blue stripe between them is for cohesion. The obtuse angle symbol represents joints that extend beyond a normal range (hypermobility).

Anyone with hEDS can use this flag for whatever they’d like.

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sometimes when chronically ill/disabled/neurodivergent people say “I can’t do this thing” they really mean “I can technically do this thing I guess, but not without pretty significant repercussions” and I really need more fully-abled people to understand the validity of that

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Why do people say "How are you?" ...as they walk past you

PERSON: How ya doing?

ME: I'm beset with calamities.

PERSON: Great! See ya later.

ME: *whispers* but calamities

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Just wanted to give a quick rec for WeatherX in case you guys haven't heard of it. If you have barometric pressure migraines or sinus headaches, this is for you!

Basically it's a set of specially made earplugs that keep the pressure more equalized for you. And the accompanying phone app sends you an alert when a significant pressure change is on its way, so you can put in the earplugs before it happens.

When I was a kid, I had no idea I would grow up to be a barometer

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Just wanted to add: if you sleep alone and you've been unusually tired lately, it's possible you have sleep apnea and no one has been there to notice how weird your breathing has gotten. You can use the SnoreLab app to record your sleep sounds. Then in the morning you can easily see spikes on the digital record, then click on any given spot to listen.

I expected my cpap machine to make a dramatic difference right away but after waking up from my first night on the machine I think the experience can be described as I woke up and thought “well I don’t think I feel dramatically different but it also definitely feels like something in there has been unclogged”

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Update at 3 am: intractable migraine day 23. After an unusually mild day on Tuesday and hopes this was finally starting to fade, yesterday morning was awful. Finally got into my neurologist's infusion center and got the IV cocktail again, including another big dose of solumedrol.

Please, please let today show improvement. The effect of the solumedrol should still be ramping up through the next several hours. Brain MRI was normal and so was eye exam. The ophthalmologist didn't see any obvious optic neuritis but the symptoms definitely hint at that. IV solumedrol would be the treatment for that anyway, so I don't really care either way honestly.

I just want my life back.

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I was searching for "National Migraine Awareness month" and found this gold mine instead. 😂

Monthly Holidays: June

Monthly Beer Holidays

Canned Beer Month

Idaho Wine and Cider Month

Monthly Food Holidays

Corn Month

Cucumber Month

Dairy Alternatives Month

Dairy Month

Fruit & Vegetable Month

Iced Tea Month

Lemon Month

Mango Month

National Candy Month

National Country Cooking Month

National Papaya Month

National Rosé Month

National Seafood Month

National Soul Food Month

National Steakhouse Month

Ohio Wine Month

Okra Month

Pluot & Aprium Month

Sorghum Month

Turkey Lover's Month

Monthly Health Holidays

Alzheimer's & Brain Awareness Month

Antiphospholipid Antibody Syndrome Awareness Month

Cancer From the Sun Month

Cataract Awareness Month

Child Vision Awareness Month

Children's Awareness Month

Fight the Filthy Fly Month

Hernia Awareness Month

Men’s Health Month

Myasthenia Gravis Awareness Month

National Aphasia Awareness Month

National Congenital Cytomegalovirus Awareness Month

National Migraine and Headache Awareness Month

National Pest Control Month

National PTSD Awareness Month

National Safety Month

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Professional Wellness Month

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Monthly Heritage Holidays

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Other Monthly Holidays

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Hetero Awesomeness Month (Idaho)

International Surf Music Month

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Light the Night for Sight Months

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National Zoo and Aquarium Month

Own Your Share of America Month

Prepare Tomorrow's Parents Month (5.11 - 6.15, 2025) [From Mother's Day to Father's Day]

Rainbow Book Month

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Recycling Month

Skyscraper Month

Sports America Kids Month

Summer Month

Women's Golf Month

Monthly Business Holidays

Effective Communications Month

Entrepreneurs "Do It Yourself" Marketing Month

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Oh past self, my sweet summer child. The migraine is still going, day 19 now. That solumedrol infusion (above) did give me total relief... for 12 hours. And everything has been a bit milder since then, but still very disabling. Still have to close my eyes to even turn my head or walk around the corner into the kitchen.

Brain MRI and eye exam both normal👍and all the meds my neuro has me on certainly keep things manageable enough to stay fed and hydrated.

But it still will not end. Still looking for any advice or even the smallest tips on how to help an interactable migraine actually end. Or is it truly just a matter of letting it time out when it's ready? I feel like I'm doing everything I can and it's still not enough.

Trying Trudhesa when it comes in the mail this week, and I'm using the vagus nerve stimulator now. Otherwise still on the regimen I shared above.

Any advice is welcome, thank you 🤕

Fellow migraineurs!🤕

What works for you when you're stuck in an intractable migraine a.k.a. status migrainosis? (migraine that lasts more than 3 days)

I've had this one for seven days and no sign it wants to end, and I am. over it. I have good meds/protocols that all help somewhat, but my usual rescue med is failing to put a stop to it. It just keeps ramping back up.

I'm stable and can eat/drink enough--my preventative med is definitely keeping the worst pain and nausea away--but still. Help. Advice wanted. Please. Extra pissed bc this whole thing was triggered by my Botox injections last week. Those lovely 31 needles that bore into your skull muscles to help migraines. I'll almost certainly do it again in 12 weeks (minus the new site we tried this time. Big mistake I guess).

Anyway, med details under the cut for anyone who wants it:

My maintenance protocol is Qilipta (my beloved) and 400mg magnesium glycinate at night. I also take Cymbalta and amitryptiline which both help a little. Ubrelvy is my rescue med, usually taken with advil or excedrin.

For this current migraine I'm doing the regular rescue with lots of heat and ice (cold cap), black sock over my eyes or hat and sunglasses to move around the house. My primary doc gave me a Nurtec sample and a Zavspret sample today (cannot be taken on the same day). She also prescribed Toradol and Zofran to use only when needed. AND my neuro has me on a dexamethasone taper pack, which I'm 2/3 done with almost no effect. Also doing some massage and vagus nerve stim exercises, though our actual vagus nerve stimulator isn't active right now. Because $$$$.

I just happen to have my Remicade infusion tomorrow (my RA biologic) and they will probably add a shot of solumedrol if I ask. So I might do that if things aren't looking up tomorrow. But I am NOT looking forward to double the steroid side effects that will hit tomorrow night if I do. 😩

So looking for more advice--when you get stuck in this mode, what helps your brain snap out of it?

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Hey OP how does it feel to be a freaking genius?? You just won the pillbox competition I didn't even know we were having

Ngl I giggled from doing this ig it’s effective for mental health. Plus made me remember to take me setraline. Wellbutrin on the other hand…it depends when I eat, that shit has been beating my ass in terms of weight loss and nausea. Thankfully I have my weighted blanket by my side for it all.

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I'm sure they are 😁

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told my therapist my antidepressant/adhd meds have been working great and I feel truly productive for the first time ever. they told me to make sure I don’t fall into the belief that I don’t need them anymore and quit taking them.

like. buddy. pal. I take this pill consistently and become the closest thing the human mind could comprehend as a god. you’ll have to pry this Wellbutrin from my otherworldly immortal hands. this is my ambrosia and I consume it with gusto.

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the worst part about taking boatloads of Wellbutrin and then losing a lot of weight is that actually, doctors have been lying and gaslighting me my entire life. losing weight did not at all help with my joint pain. it didn't make walking easier. it did nothing to help with my hEDS.

since ive lost a lot of weight, walking is harder. sitting for long periods of time hurts more. im clumsier and get injured more easily, and my bruises last for even longer. im tired all the time. i black out way more often. i get nauseous eating now and do so inconsistently. i need to use my cane more often, and my palm and wrist hurts more now after. i don't feel any better at all, actually! i'm just skinny and suffering now.

never believe some shitty doctor who tells you it's all your weight. i felt better fat than i do now, and humans who live healthy lives where resources aren't restricted generally biologically ARE supposed to carry extra weight. i'm so sick of being sold this idea that we're all just slowly killing ourselves doing the very thing we have to do to live: fuck your doctor and fat liberation is and always has been directly tied to the progression of disability rights.