u/WaysideWyvern

I also have pots and me/cfs, which plays into some of my food intolerances. But anyways. Recently I’ve been less patient with being sick and with my diet. I miss the heavy hitters like sugar, caffeine, certain nuts, chocolate, ferented foods. Recently I’ve developed a dumb (sometimes wasteful) habit of just…pretending I can eat something up until I’ve had a few bites. Usually a few bites jsut gives me some forehead tingles but doesn’t fully break me out in hives or give me a migraine. Like this morning, I broke my budget and ordered breakfast after a rough night. The place had sandwiches that are safe enough, but all their drinks are caf tea and coffee. So I just ordered chai, diluted it 1:1 with extra milk from my fridge, and then drank about 4 sips. It’s pretty dumb. I paid for a whole drink. I could’ve made a drink at home that I could actually drink. But I just miss buying a breakfast sandwich and chai so goddamn much.

Sometimes I make 1/4 of a package of top Raman. It’s not enough for a meal, but it satisfies the part of my brain that craves it without completely destroying me. I’ve always had sensory seeking problems. I guess this is part of it.

Okay so I live three blocks from the ocean in a fog belt. Most beautiful place on earth, but it might be killing me.

I am severely sick with mecfs. I cannot work, can’t really leave the couch, I have all sort of skin problems, now my eyes are turning red. Yes I’ve had all slandered labs and even se non standard ones to type other stuff out. My brother’s room across the hall has a shit ton of mold growing on the walls and still possibly does (he claims it’s just stains but I don’t trust it).

I’ve been stuck on n this house for a year now because of my illness. So sick I cannot leave or do anything. Now that it’s getting to summer again, I had the idea that maybe I could sleep outside. I’ve heard people recommend it. But here’s the problem: our yard is always full of fungus.

We don’t have very much yard space. Instead of one big back yard we have small yards on all sides. My only real choice for sleeping would be the side yard. But it has some problems. There is a huge pear tree, obviously I would sleep far away from it to avoid falling fruit, but it puts most of the yard in shade. When we try to grow plants there, they always die of fungus and rot. No matter what. It barely gets sun. Even our front yard, which gets more sun, still gets moldy lemons.

Would this still be better than inside the house? If I could drive, I would try to just drive up somewhere and sleep I the care and camp. But I can’t drive. If I could live somewhere else, I would, but there is is truly no one, and most of the houses in this city have mold. Because of the fog belt. I just love the idea of being out of here and in “nature.” But I’m not sure if my mostly paved, shaded back yard counts as “nature.”

For months, I was just very delayed. Sleeping 7am to 5pm, give or take. But after several weeks of having to get up earlier, something snapped. One day, I stayed up all night and day, crashed out at 9pm. Slept until 4pm. Then, couldn’t sleep that morning either, stayed awake till 7:30pm. Crashed out, woke up to get a snack around 2:30-4am, crashed out again, slept until 4pm. Now it’s the next morning and once again, haven’t slept, don’t feel like sleeping.

This shit is awful for my brian. I feel like shit. I’m not eating. I’m not taking my meds. But once I’ve been awake that long, I shut have to sleep. I had to pry myself out of bad at 4pm. I think I could’ve kept sleeping for 5 more hours. It’s like, for 24 hours I can’t sleep at all, and then the next 24 hours all I can do is sleep. I don’t even know what this is at this point. It’s not bipolar is it?? I don’t have any other symptoms of mania. But this shit is insane. I thought it couldn’t get any worse than being nocturnal but I was so wrong. So funny all those people who say “just stay up all day and go to bed early and it’ll re-adjust you!” But what they dork account for is how I then just sleep all day to account for the lost sleep and end up sleeping even less the following day because of how long I just slept to make up for the lost sleep. What I nightmare. I’m severely disabled with constant neurological symptoms so when I don’t sleep well I’m just barely able to even feed myself.

I’m looking at getting something like this. I’m ambulatory but cannot stand for more than a few seconds. I’m considering this over a power chair because scooters are more light weight, and there are not a lot of ramps where I live.

However, I was reading about ADA, and it sounds like like maybe I would need some kind of “proof” of disability to take that into a shop? I don’t have a parking pass because I don’t drive and I’m 23 and “appear” healthy so this seems a bit dodgy. If anyone has experience with this please lmk! I’m very nervous to have to go out in public with something motorized but I just miss my independence a lot.

I don’t really fw severity levels because they seem to mean such different things to different people, but I have been couch bound. I no longer crash from taking an uber to my doctor’s appointments. I didn’t crash from my tilt table test, where I had to walk all over the clinic and of course stand for 10 minutes. However I did crash just from walking down my street and back just a few weeks before??

I would very much like to be able to go to the park or the ocean. They are so close. I can literally see both from my house.

My options without spending money:

A cane + frequent breaks (seems the most scary to me, my pots makes walking a nightmare)

My street bike (this was what I used to get around before I fell ill, I know it would be less tiring than walking but it still requires peddling)

My mom’s peddle assist e-bike (no throttle, it honestly scares me a bit, feels like it would be harder to control?)

With spending money:

Purchasing a sit-down mobility scooter with three or four wheels (I would be embarrassed to have my neighbors see me since I am so young but this would be the easiest I’m sure. Tho I do worry a bit that it would be bumpier than a bike which would hurt my head)

E-bike with throttle: would still kinda scare me, again cause I feel like it would be easier to fall than a normal bike

Anyone with POTS heavy mecfs have experience with which of these was easiest to adapt to? I’m not trying to exercise, I literally just wanna get to these beautiful bits of nature that are literally so close I could practically reach out and touch them 😭

It should’ve been you
My fairy friend
Who spun in the flowers with me
And spotted magic in the dust

It should’ve been you,
My follow princess
Who’s glass slippers always fit
Who always felt the pea I'd hid,
underneath your pillow

It should’ve been you,
My confidante
Who whispered back secrets, in turn
Over lamplight, and firelight

It should’ve been you,
My tutor
Who taught me about bl, and dnd podcasts
Who showed me how to love a thing so
much that it becomes you

It should’ve been you,
My partner in crime,
We tricked the audience so good that time
our characters kissed each other on stage
They said it seemed so real

It should’ve been you,
My other half
Who showed up to our lame senior dance
wearing the same colors as me, on accident
And danced with me all night, long after the
rest had left for better parties

It should’ve been you,
My mirror,
The truest part of me, who’s footsteps I
always followed
Or else lead

It should’ve been you,
My best friend, my soul sibling,
My person
My lifetime love

Each day that you have wanted me
Is a day I cannot forgive myself
For never being able to want you back,
In the same way

It should have been you.

THIS SHIT MAKES LIFE WORTH LIVING

lolol okay that’s an exaggeration but OMG. As someone who previously lived on yogurt, lemons, and vinegar, I’ve been SO sorely missing acid in my food. Someone on here tipped me off about malic acid. I actually have it every day already in the magnesium malate in my electrolyte drink. So I knew I handled it well.

It honestly works in everything. I just put it in a soup that would normally have some tomato and it added back the punch it needed. I’ve mixed it with cottage cheese to make it more similar to yogurt. I made some amazing quick blueberry jam. I literally drizzled it on popcorn 😅

It comes in crystal form and it’s VERY potent, so the best way I’ve figured out is to mix some with water and lick my finger to get an idea of how strong it is and then use it like I would vinegar/lemon juice. If anyone is sorely missing citrus and fermented foods, highly recommend!

The Facebook group is locked and impossible to get into. One of the subreddits is locked and impossible to get into. The other requires manual approval for every post. I don’t know Ben know where to go to talk to people or get info because that’s all there is. It feels like some secret cloud of knowledge that everyone is hiding behind walls or money. I’m frustrated and hopeless and I don’t get it

Does anyone know of a good one? Especially someone who treats TBI or has experience with hypermobility? I’ve had PCS with neck involvement for a year and the PT I was seeing basically told me she’s out of ideas and stopped our sessions even though I’m still having all sorts if issues so I’m trying to find someone else.

Where your clothes magically disappear off of your body the moment the water hits you, and then you are magically dry and back in your clothes the moment the water shuts off, I would do it all the time. Every day like a normal person. Even twice a day like some people! I could do it whenever I wanted. Actually *being* in the shower is really nice. But I just can’t handle the being cold, and being exposed, and being wet. So I just suffer until the suffering from how dirty I feel is worse than the suffering of the shower. It sucks.

Tl;dr after being quite severe I improved to housebound and able to cook and do some entertainment activities using ldn and ns work, but now my improvement has stagnated and I feel stuck and don’t know how to push without losing my stability

In June, I became bedbound, unable to walk or speak, cook, watch videos, etc etc etc the whole nine yards it was very traumatizing tbh. I started making extremely slow improvements. At the beginning of November, with the help of my mother prepping and freezing stuff for me, I was able to start feeding myself using an instant pot. With that, I started tolerating bits of video again. By Christmas I was able to gain the cognitive ability to cook other things so long as I sat while doing it.

In January, I stared ultra low LDN. It made me entirely nocturnal but with that I made huge leaps. Started being able to listen to long form YouTube videos again. I started writing poetry. I watched a few seasons of television, a friend drove me down to the the cliffs and we hung out there, I ubered to appointments and could handle the music in the car, I cook all my own meals and even experiment and have fun with it sometimes. I do not lose the ability to eat or speak anymore even in crashes (although it can get harder).

But the thing is, it’s pretty much been that way since January, and I’m not getting any better. I feel much more calm than I was when I was sicker. My hrv seems to be better. My resting hr was a much better. I can use the toaster without it giving me a heart attack when it pops. I am stable because if I do nothing but feed myself, I do not crash. I am so grateful for that stability. It is everything. However, when I try to push things, I still crash. I’ve tried just walking down the sidewalk, and I crash. I still start losing my ability to form sentences after about 1.5 hours of conversation. My head pain and brain fog are still completely debilitating and most of the time I still cannot do the creative pursuits I want to. I’ve actually been *less* physically active because I have less appointments these days. I’ve been kind of depressed, not showering enough because I don’t want to deal, just spending all day on my phone.

I’ve been aware of nervous system work for most of this time. It has helped me get through crashes, and comforted me a bit to see some people getting better, but I’m not really sure what to do now. I do not live a healthy life. I’m entirely nocturnal, I never go outside, I’m entirely reliant on my parents to support me financially, I have no energy for hobbies beyond the occasional writing, I spend 12+ hours on my phone every day because everything else is too exhausting, my social life is just friends visiting every three to six weeks. So like I don’t feel like I’m in a good place. SO much better. No longer in fight or flight. But not good. And I just don’t know what to do with myself now.

So my dad has this cooky rich friend who used to live in our city. They met up and my dad told him I got sick in the last year. The guy says “every single house I’ve owned in [our city] has had hidden black mold in it. You guys should come down to [drier city] and stay at my [empty] property there. See if she feels better after a few weeks.”

I’ve been severe for a year, and it would be a 5 hour car ride, and a whole new environment. I would also have to be traveling with my dad, who I used to travel with just fine, but recently he’s been losing his mind a little (possibly early dementia) which makes me a little on edge when I’m around him.

The thing is, there is definitely some mold in our house. And I have constant signs of mold illness like my eyes always burn, head feels itchy like it’s on fire, always getting yeast infections. It’s a very slim chance but of course I’m desperate. The issue is, I’m worried it will just crash me. That the travel and the stress of having to be around my dad 24/7 will just make me worse. I think I’ve crashed after every long car ride I’ve ever been on.

Has anyone ever tried something like this?

I wonder sometimes, if it was impossible for them to love me as much as I loved them, because of this.

Because they were the only love I'd ever known. My first kiss, first everything. But they had a different first love.

I was their longest relationship. They told me that our bond felt deeper and much developed than their first love. But they ended up still having feelings for that person, down the line. Which is what ended things.

I know their love for me was real. But I don't think it was the same as mine for them. How could it be. To me they were everything, all I'd known. But to them I was one of a multiple.

I fear, sometimes, that I will never love someone the way I loved them. I don't know how you're ever supposed to get over such a formative experience as your first real love. It's been over two years now and I still think about them. I think that part of me felt, even after we broke up, that we would inevitably find our ways back to each other.

Because deep down it feels like the only true things but I know it only feels that way to me, because they were my first, and not to them.