#i've got sound and light sensitivity so i might be starting to get a migraine tho

[sasukimimochi]

mmmm stubborn headache. didn't go away with tylenol. *squints at the idea of it being a migraine* stay away, you migraines.

i wrote more of PBM but its not a full section yet~ longer than part 3 but idk if its gonna be longer than pt 2 yet. humhum

[firespirited]

My back rehab walks are in a oval shaped radius 1km (sideways from home) as I live on the side of a steep hill. Walking along the main road just above my building and the two below and above is not flat, but also not nearly as steep as any ventures up and down. The bins are spaced about 200m along each main road so I've been using them as incremental destinations long before I found out some of the neighbouring housing estates and hotels threw stuff out in them.

After 7 months of gradual strength building I can now do 1h30 or 2.5km - it takes all the energy for the day so 'chore days' have shorter walks.

I stick to these 'loops', walk before 7am and add a little more if I feel OK. June was the month I started adding some hill for the lower back now that my hips are a teensy bit stronger.

But Tuesday, I got the fanciful urge to visit the thrift store where my carer drops off 'rubbish' finds and restored non custom dolls. It wouldn't be open but that wasn't the point. It would be new!

Google maps said 20 mins on foot, I added another 10 to account for the steep hill and figured I could attempt this hour long adventure, screencapped the map, took supplies and Talia the dog (she's better behaved about roads).

I set out at day break and 50 minutes in, it hits that I'm not going to make it, turning back now will at least give me the chance to maybe get back without calling a taxi.

I'm on a quiet road with a few lorries and tractors, the vines are beautiful, there are rare orchids growing by the roadside. I'm scared though because if my body is actually communicating... It Is Bad bad.

The next hour is like one of those slapstick comedies where bits fall off the car except it's my body reacting to overdoing it in increasingly stupid ways.

I expected excessive sweating, tremors and hives, I wasn't surprised as my knee and ankles began to *really* hurt, then i must have jostled something in the shoulders or maybe stress caused it? But the neck pain is blinding and then cherry on top: endo cramps mean I'm dragging one leg from hip/sciatica. Thankfully Talia is unfazed by stops and starts and knows not to pull. I have the cord lead tied around my wrist because I've lost grip in my hands.

I got home and rested in full dark for the day but I'd done 4km (!!!) and quite a bit of hill so I knew today and maybe the next few would be payback time.

The 48h delay will have you thinking that your energy hangover won't be too bad. Yesterday I went about my day as usual and it wasn't until a few hours in that I could feel the small twinges that mean the energy debt *will* have to be paid.

So I have a light/sound sensitive migraine, fever, joint inflammation and very tight cramped shoulders. It could pass tonight, it could be a week or two. It is what it is.

Just 7 months ago I couldn't walk 200m. I can't complain even though it hurts, physical pain doesn't hold a candle to the agony of end of life exhaustion. Mine is currently lower and it feels incredible but also like it might not last.

—————

I finally have an appointment for a neck x-ray Thursday the 13th, I hope they find something but not too ugly you know? Lower back building has been excruciatingly slow with lots of set backs and I miss crafting so much. It's a long car drive away in the heat but worth it for answers.

Yesterday's find was a Beurer multifunction hair iron, curler and crimper - I found the manual online and it's 125C to 160C which won't do for safely handling nylon and saran, a hair dryer and books so I cleaned it all and put it in the donation bag.

Maybe some day I'll be able to visit the thrift store when it's actually open 😁 my next challenge is to try the bus. I've had serious neck pain from small car trips as your core braces for shocks but that's the next big thing to try, something that could radically expand that 1km bubble.

There is also a project I've wanted to do for a very long time: parcels. If laposte weren't a disaster i'd have done it so long ago. I think it's time to try again though. It'll take a while to find everything and put it together but yeah.

I'm writing this in defiance of the dread that comes with these headaches and pain, goals might not be realistic but there's still a chance. We'll see tomorrow and the day after that.

[cuntess-carmilla]

would you or any of your followers be able to describe chronic fatigue when it's mild for you, and how it feels when it's making thinking difficult? i'm trying to figure some things out but i hesitate to draw any conclusions because i might just be tired. yoir fatigue post had me thinking (ive never claimed to have chronic fatigue, im sorry people are throwing that term around in harmful ways)

Sure! I was actually worried of invalidating people who have very real chronic fatigue but whose cases are milder or more moderate instead of severe, which is why I added that it doesn't disable everyone who suffers from it to the same degree and some chronic fatigue sufferers can lead a normal-ish life.

When my fatigue is moderate, I can go out on my own using public transport, I can maybe run a couple of errands, I can think more clearly and I don't get tachycardia from mild physical effort (I have a tachycardia condition specifically so don't necessarily look for tachycardia symptoms in your case to see if you have chronic fatigue or not).

However, even if I can do all of that many days a week, by the end of the week I end up exhausted to my bones and I spend the whole weekend recovering, usually staying in my pajamas the whole weekend without showering unless I'm forced to leave the house. I might have started that week's Monday okay-ish, but by Thursday I'm starting to run on fumes, and I often have to spend all of my free time resting, so no going out unless it's something I REALLY want and I do it knowing it'll come back to bite me in the ass, no hobbies or anything that demands too much mental energy.

When my fatigue is mild to moderate, I still have to be extremely protective of my energy reserves to keep some energies saved for emergencies, caring for my body and attending my responsibilities. If I'm under more pressure than usual (such as finals season when I was studying) I get VERY irritable, volatile, and prone to meltdowns. That's pretty much what got me misdiagnosed as bipolar.

Now, when it's from moderate to severe-ish... While the milder form of chronic fatigue is still disabling and it SUCKS, more severe chronic fatigue is a different beast. The worst cases are of people who're completely bedridden and have to stay in a completely dark room with ear defenders to avoid migraines and other forms of pain.

Personally, when mine gets severe, I'm semi-bedridden; I sleep for up to 12 hours and still wake up more exhausted than when I went to bed, it takes me at least 5 hours to be able to get out of bed after waking up and it's often only because I'm about to wet my bed and I need to drag myself to pee immediately (sometimes after that I still go back to bed for a couple more hours though), and then I stay completely still sitting in one place while I'm not in bed and do NOT go up the stairs until I go back to sleep.

I do get cognitive dysfunction/brain fog when my chronic fatigue is milder, but when it's more severe it's so bad that I've had to pull a calculator to do 2+2. My grammar in both of the languages I speak goes to shit to the point of incoherence. And I start getting the fucking migraines, with the included extreme sensitivity to light and sound and visual disturbances (aura), a sensory sensitivity that feels very different from autistic sensory overload. My chronic pain gets so bad that I get suicidal from it alone.

When my fatigue is at its most severe, if anything forces me to exert myself in any way, I end up crying while doing it because I genuinely feel like Death. It feels like watching my life passing me by and like I'm dead but trapped in my decaying body that refuses to properly die alongside me.

[swampgallows]

Did the migraine cause extreme pain or did it just make you blind without pain? I've heard of chronic migraines causing auras (seeing like a highlight around objects? sounds funky but not fresh) but blindness i understand to be a real extreme result

(sorry this is long) here’s what i experienced:

have you ever accidentally looked into a bright light or laser and seen the afterimage in your eyes? usually if you blink a few times the disturbance will go away. i cant remember exactly what i was doing beforehand, i think just typing stuff on my laptop, but i started seeing this arc/crescent-shape in my vision, somewhat in the center but off to the right. it was like a backwards L or C, or like a boomerang shape.

the boomerang was flashing/strobing in colors and was like an incision out of my vision, kind of like when a TV screen breaks. i was trying to text my friends that i was having vision problems, but when i went to look down at my phone i couldn’t see the right side of it. it was like someone had used the pinch/spiral tool in photoshop and just faded/blurred everything in one area. 

i had cupped my hand over one eye and then the other to see which eye was being affected, as i “felt” it was coming from my right eye, but it was still present in the center of my vision regardless of which eye was covered. 

i called the advice nurse and took a shower while on hold because i figured if i had to go to the emergency room i wanted to be clean. (glad i did, because i did go to the e.r.) i put in some regular moisturizing eyedrops just in my right eye to see if it was maybe something that got stuck in my eye.

advice nurse strongly suggested i go to the e.r. as temporary blindness can be serious. while on the phone with the nurse, the shape started moving toward the right side of my vision, hung out in the periphery, and then my vision was restored. altogether the disturbance lasted about 20 minutes. 

i told my mom what happened and she said she would immediately take me to the e.r. as i obviously shouldnt drive myself. then i told my friends in voice chat and @theabsolutevoid suggested it might be the onset of a migraine. there was no pain but within the next few minutes i started experiencing a moderate, strained headache.

i’d had a pretty rough day altogether, though. that morning i fell asleep around 5am then shot awake at 8am with anxiety and feeling really sweaty and uncomfortable. i didnt have the energy to shower and i felt like i was vibrating out of my skin, i knew i had more time to sleep so i took a half a xanax (half of 0.25mg) and fell back asleep around 1030. i woke up around 2pm super groggy, still hadnt eaten or drank anything, threw up, slept again til about 430, then around 8-830pm had the blindness event and went to the E.R. at 9pm. all id eaten was maybe half a pop tart and then i had a clif bar on the way to the E.R. 

i dont have a lot of experience with migraines, but generally when i’ve had them it’s like what you’ve described: super sensitivity to light, auras around things, just sitting in the dark waiting for excedrin to kick in. 

but from the blood tests, cat scan, and the doctor’s analysis it seems it was onset by dehyrdation, which can cause blurriness and blindness or even double vision. i was given benadyl (diphenhydramine) and compazine (prochlorperazine) via IV along with hydration to help with the headache and nausea. 

i used to be more diligent about it, but back when i’d feel uncomfortable at all i’d just drink a glass of water. it helps to steady your nerves and puts some fuel in the tank, and i bet if i’d just had a full glass of water with the xanax instead of just a sip to swallow it i wouldnt have had that experience. 

tldr drink water, eat food, get good sleep or youll go blind momentarily lol