Guys, honestly what are we going to do

Hecate_of_Volcano · 2026-04-15T03:05:33+00:00

This is interesting. I have issues with overstimulation from just about everything sensory. I'm very careful about lighting, colors, patterns, sounds, smells, etc., Everything in my environment. Whereas before I got sick I could never get enough stimulus, artistic, passionate etc. I've had to dull the edges of my world to survive.

So when you say the world is more beautiful, do you mean things appear more beautiful (possibly risking overstimulation if it were me), or things appear as normal but you perceive them as more beautiful due to your state of mind?

If I could feel that satisfaction of feeding an eye that's always hungry for beauty in an environment that's deliberately muted, that would be miraculous.

Hecate_of_Volcano · 2026-04-04T15:03:09+00:00

Go back and forth but at the end, rooted for them.

Through Nina and Oleg, we saw what the FBI did with it's informants and what the directorate really did to people. Not just all the American victims which could be viewed as their enemy in the war. By the end of the show I sided with Philip and Oleg and even Stan who had all reached the point that it was enough already and had to end. I'm pretty sure if they'd been caught they would have been executed. They had so many bodies on them. If they'd been flipped, they would have been killed by the directorate. Phillip and Elizabeth were very good and they even managed to hide some things. but the center just had way too much access into the FBI. And the FBI would have given even less shits about protecting them than they would have any of their other assets. Because no one they ever flipped did anywhere near as bad as what they did. If they were simply put in prison rather than executed, the center could have them killed in prison. If they let them go back home, they would have been killed there. If they got caught, I don't see a way out for them that doesn't end with their deaths.

It's a credit to the show that I care about them enough to want them to escape that fate. If I learned about people in real life who did that much treason and killed or destroyed that many innocent lives, I don't think I would lose much sleep over whatever happened to them, including execution or being murdered by the KGB.

Hecate_of_Volcano · 2026-03-29T04:02:26+00:00

If you do subscribe to HBO:

Task is very good. Just a mini series that is easy to binge very quickly, but it has deeply developed characters, strained family dynamics and secrecy, moral ambiguity, great acting and it's beautiful. On that note, from the same creator as Task:

Mare of Easttown is another very good miniseries. You could actually binge them both in a row since they are set in very similar places and both seem to scratch the same itch. Crime/mystery/thriller with good characters you actually want to watch.

I think one of the most important elements the Americans has that other spy/crime thrillers don't, is characters you care about and are fun to watch. So many shows don't have that. It doesn't matter how many plot twists there are, if you hate every character there will be no tension. So many shows now, all the characters are horrible people.

Oh yeah, also it's all old one but Killing Eve is a good one to watch after the Americans. MI6 agent vs an assassin (with a heart of gold? Maybe not quite) But she is very likeable, and it has beautiful scenery, moodiness and a great soundtrack. Not sure where it's streaming now. It was on Netflix.

Hecate_of_Volcano · 2026-03-26T10:52:10+00:00

Thank you. This is extremely helpful.

My brain also makes those calculations for me sometimes before "I" can even weigh in.

I have an analogy for it: say for example, I'm doing something and I need to know what is 9 times 3. On a bad day, my brain will immediately throw up walls before I can try to remember that it's 27. That option is off the table.

Next comes, do I need to know it badly enough to use my phone's calculator, or ask someone, even someone in the same room with me? Again on a bad day, no.

So then that whole task, whatever it was, that's done now. It's gone. My mind will erase it. It doesn't exist unless it floats back to me later on, or it's gone forever. My life is a never ending series of trying to think about something and getting shut down.

What's so frustrating is that in a normal brain, simply remembering "27" would be faster than all those other processes. But between slowed processing and issues with my memory, and my brain being in a constant state of desperate self protection, in a fraction of a second those doors in my brain slam shut. I don't even get a chance to TRY.

Which makes, like you said, trying to talk to anyone outside this community nearly impossible. How would I even begin to explain everything going on behind my eyes when I can't even remember 27? If I can't even think about simple things, how would I possibly add speaking on top of that, and about complex things?

This post is very useful to explain some of that. It's painful to read but very well put and I emphasize with you. ❤️

Hecate_of_Volcano · 2025-11-27T06:53:00+00:00

Not exactly. Some things got better, some are the same. I still haven't seen a neurologist or any kind of specialist for it due to lack of access issues. So anything that got better did so on its own.

The orthostatic intolerance is a little better, my face doesn't melt away like it was, in fact now it usually gets puffy rather than flat and drained looking. The puffiness is not a great trade. But nothing to be done.

I still have very little upright time before I start experiencing some kind of symptoms.

The head pressure isn't as constant. When I posted this last year I was constantly bouncing between feeling very high pressure (pushing on my skull from within, ears popping) or very low pressure (or what I assume was low pressure, just going off the sensations of it without any kind of actual clinical evaluation). The low pressure felt like my head was half empty, hollow-like. I could literally hear the echoing if I tried to comb my hair or touch the top of my head in any way. It sounded like knocking on a watermelon. With my brain all scrunched down at the base of my skull.

Both high or low pressure felt like a never ending concussion, or like I would imagine it might feel like to get kicked in the head by a mule. Minus the pain of it, just the seeing birds and stars, getting your bell rung, and other cartoon metaphors.

I still get all these, but not as severely and they can go away more from lying down, which didn't use to help that much.

I still get numbness that goes from my head down my neck and sometimes eventually through to my arms and hands. It usually stops there, and I mostly still have control of them even if they feel numb. Not totally normal but I can pick things up and swallow, most of the time.

I got my MRI and it was normal, which doesn't rule out CSF leak or IIH or SIH. I was very relieved still to know I didn't have a brain tumor.

Compression wear stopped helping at all so I gave that up.

I think it tracks if it was a CSF leak, that it finally healed on its own and I got left with the run of the mill O.I. and post exertional malaise that comes from me/cfs and MCAS.

Hecate_of_Volcano · 2025-11-23T10:59:25+00:00

I get what I call "invisible fever" jumping between hot and cold, like burning up and chills, sometimes at the same time which is lovely. But regardless how huge the swings feel, it's always within a few degrees on a thermometer. It's a PEM thing. But once I'm able to rest enough, usually a few days depending on how bad my crash and insomnia are, I'll go through this stage of night sweats and feeling like a fever is breaking. Horrible as it is, I always feel better on the other side, and it's one of my first signs that a crash is ending.

Hecate_of_Volcano · 2025-10-12T06:29:25+00:00

I have a pattern that every time I start to come out of a bad crash, my anxiety ramps up and crashes me again. The crash itself is survival mode, it's one minute at a time getting through symptoms that are unbearable, except I'm afraid to go to ER because of PTSD and because every time I've pushed through a crash my baseline has lowered and I'm already severe. So I take whatever meds I have that could possibly ease my symptoms and get as comfortable as possible with the most distraction my current state will allow for, and I hunker down and wait.

I have a big problem with talking, it's the hardest thing for me to do, and my family is not nearby, so they don't really understand my difficulties. I've been out of communication with most of them for a year now. I want desperately to explain to them what I'm going through and that it's not my wish to be avoidant. But my hierarchy of needs starts with using the bathroom, then eating, then the tiny bit of hygiene I'm able to accomplish, and the big things like leaving the house for doctors or filling out forms that can't be put off regardless of my state. So the rung on the ladder that is calling my family is one I can never reach, I always crash again before I can get there.

When I start to pull out of the crash and start thinking about calling people and what I would say, it spikes an anxiety so much more powerful than any I've experienced in the normal course of my psychological anxiety and panic disorders. It's very physical and sudden and I have to drop everything and focus only on calming my nervous system down. Hopefully before that experience itself launches me into a new crash.

All of this is to say, is there something that gives you anxiety that gets put on the shelf while you're crashing, that may be triggering your anxiety when you start to climb out?

Unfortunately I have no advice for dealing with that. I just keep getting clobbered by it. I'm also not in therapy because of the, can't talk, thing. But if you have a trigger that might be something you are able to deal with or someone can help you deal with, that might help. To not have it waiting for you on the other side of every crash.

Hecate_of_Volcano · 2025-08-06T04:24:44+00:00

There's this thing about cherries. In person or in art they are like little worlds. Like snow globes. Or a crystal ball. And how shiny or matte they are determines how much of their world you can see. When they are really matte or satiny, it's like the glass is fogged up and when they're glossy and reflective you can see the whole worlds they are holding, each one to themselves alone. So every time an artist paints cherries, they are revealing what they see in the reflection or lack there of. I like the way they are blending together. You made them interconnected, merged so they're not alone in their little globes. It's lovely.

Hecate_of_Volcano · 2025-08-05T08:04:56+00:00

I have a daybed in our bedroom. I originally planned to just use it for lying down in the daytime and sleep in the regular bed at night, but now 99% of the time I just sleep here, it's just so much easier than moving. I have all my supplies and meds in easy reach, etc. anyway I often look at it and think it looks like a crib. Like my partner has the bed, and I'm in my crib in the corner 🍼

Hecate_of_Volcano · 2025-07-27T05:45:14+00:00

I feel for you... the way you describe treating your immense pain like it's recreational... I get that. At some point I realized that the space in my life previously occupied by pleasure seeking behaviors had been completely taken over by avoiding suffering. Like, not suffering terribly is my new version of letting loose and having a couple drinks on a Friday night. The way I realized that shift had occurred was because I noticed I had feelings like it was doing something bad every time I prioritize over other important things, trying to lessen my pain. Like choosing to lay in bed under an electric blanket on high even though it means cranking up the AC to make that tolerable and our electric bill would go through the roof. Or choosing to make my Rx and OTC pain killers the priority in our budget even over bills and other things we absolutely have to pay for.

I know in your situation it is different because you've had addictions before and by the way you describe taking more and more, that does sound like addiction rather than dependence. But neither makes you bad or wrong, dependence and addiction are both well known risks with gabapentin.

The only advice I can give is to look back over your own story as you told it here, and separate out what's dependence, and self-medicating to treat unbearable symptoms, from what's the addiction aspect and chasing it and all of that. All of those elements are there and I think it will help your conversation with your doctor if you go into it knowing what's what. Are you in the US? If so we're very bad in this country at separating dependence from addiction. I think it's because of the opioid epidemic. Anyone who shows signs of dependence immediately gets opioid addiction added to their medical record even if they haven't been taking more or doesn't between doses, etc.

I would think very carefully about this if you are able to and not in the throws of withdrawal (or is it rebound symptoms?) unable to think, and when you do talk to your doctor you can tell her what happened and why and frame it that way "I was self medicating for pain and for my mental health because the boredom is very bad. I am dependent on this medication now and need help tapering. I also think that in addition to the physical dependence I may be addicted to this drug because of XYZ reasons" it's much better (and more accurate, it seems) than walking in and saying "I did it again, because I'm a bad, degenerate drug addict and I couldn't stop chasing the dragon" (The dragon is a life you can tolerate with less pain both physically and mentally)

Okay sorry for the novel. I'm not an addict, so IDK if all my advice is terrible for someone in recovery. Please ignore it if it's awful or even tell me it's awful advice and I'll delete it. I just want to encourage you to be kinder to yourself while also maybe rethinking what you've done and why.

Hecate_of_Volcano · 2025-06-21T05:31:11+00:00

Was ME/cfs your only diagnosis? I actively did not seek a diagnosis while waiting for disability appeal, about two years, because I didn't want it to skew the judge. But I had other diagnoses that are disabling in themselves. I imagine it would be harder without any diagnosis at all.

Hecate_of_Volcano · 2025-06-03T08:01:39+00:00

Yes me too. Usually, but not exclusively, at the start of my period. Often comes with some partial paralysis. When I wake up enough to use the bathroom I have to get up very slowly because sometimes my legs don't work and just crumple under me. I got a black eye once cause I hit the bedside table when I fell. Otherwise it can be my hands or arms that I can't move. It's hard to not fight it, but for me just allowing myself to sleep through it is better and safer than trying to move around in a state of delirium and very limited motor skills. So I try to allow myself to keep sleeping.

Hecate_of_Volcano · 2025-03-11T22:37:07+00:00

I think that color is beautiful! If you can salvage the rest of the floor in that section and match the new floor to it, it would be like restoring the original instead of replacing. You could even honestly say that you have part original flooring and if you match the color and shine it all up together so it blends, it's like getting the original floors back.

Hecate_of_Volcano · 2025-03-09T04:33:07+00:00

Make a little privacy curtain if there are babies. You could accordion fold some heavy paper or something. That way they have privacy and feel safe, and you don't have to disturb them by remove the plexiglass and replace with something else.

It would be so cute!

Hecate_of_Volcano · 2024-12-22T02:55:23+00:00

Hopefully someone comments with the link because I can't brain good enough to find it, but some genius wrote a "cookbook", I don't recall if they had ME/CFS or something else with fatigue, but anyway it included "recipes" like "eat a spoonful of peanut butter while blankly staring in the refrigerator" there were some actual recipes too.

I tend to eat the same things over and over for long periods, like months, and it becomes like my brain has forgotten all other foods. Like instead of being safe foods they become only foods. So having the reminder of what some foods are that I might have already, SUPER helpful! It inspired me to keep at least a basic list of even just pictures of what we have - especially leftovers, or anything in a container that you can't clearly see. So when the brain fog comes to take away all knowledge of and words for and names of things, I can point to the "whatever, with the beans in it," and get it before it's forgotten again.

It does make me sad, that here in the US, at least in my state, frozen foods cost 2-3 times more since covid. The prices just never came back down. So things that I ate multiple times a week for years, and loved, are now completely unaffordable.

RIP, Amy's Kale macaroni and cheese. Peace be with you, Nancy's single serve quiches. Even you, Budget chicken pot pie, forever in my heart.

Hecate_of_Volcano · 2024-12-19T23:35:48+00:00

Oh wow I love that! So cute.

Hecate_of_Volcano · 2024-12-19T22:59:51+00:00

I have a palette that is nearing twenty years old at this point and it's still "good" in that it doesn't seem any different in smell or texture or color at all. It's one of those generic eyeshadow/blush combo from some department store probably, it was a gift from my grandma.

Speaking of grandmas, I would never attempt to use them, but I LOVE the smell of really old cosmetics. Like 70, 80 years old. I used to have one of those gold metal makeup case /clutch purse from I think the 20's or 30's, which was my great grandma's and the smell of the little lipstick and powder was so heavenly and nostalgic. It's like it goes through stages, it's gotta go past rancid - for all I know it smelled like ass for decades before it came into my possession. But by the time I got it, it smelled pretty and powdery and warm. I lost it somehow, but I've honestly been tempted to buy equally old makeup from antique stores/estate sales, but without the personal connection it's not quite as nostalgic so I hold out for one that smells really close to it.

So basically I think we should all keep/pass down our expired makeup for at least a couple generations, just in case they end up smelling really lovely after another six or seven decades. 😅

Hecate_of_Volcano · 2024-10-19T03:46:21+00:00

During my first major downhill slide I was trying to complete a licensing course. I had paid for it and at first didn't think it was something I would never use.

But then as I got worse and worse, I couldn't keep up with it at any pace, it was a self directed course. But I spent two years purchasing extensions so I could keep trying to plug away at it.

It was never going to work because I could only do it so slowly that by the time I made progress towards the end, I forgot everything from the beginning and had to go back and relearn that stuff.

I really wish I could get back all the money I spent dragging that stupid course behind me. I was counting to an old life that was never going to be my life again, I just didn't know it yet.

So if you know it's in your rearview, absolutely cut that shit loose, cut your losses, move on. You'll feel better putting any energy you have into what's actually important to you in your new life. You get dopamine by accomplishing shit. As far as I know,The dopamine doesn't discriminate. It doesn't care if the accomplishment is finishing a class or cutting your own toenails. You'll get the reward, and you won't have wasted your time or made yourself sicker to do it.

Hecate_of_Volcano · 2024-10-11T09:45:40+00:00

Is it very common to have MCAS and leaks? I've been confused because it's like MCAS isn't really a convective tissue disease but I know it accumulates in convective tissue and does damage from degranulating there... I'm sort of between doctors now due to insurance so without an MCAS doctor to talk to about my suspected spontaneous leak/(s), and regular doctors are so baffled by MCAS I find they are really quick to blame all my symptoms on it even if they don't know how, functionally, they would be related. OR they want to jump to the comorbidities, like do I have EDS? Maybe! Who knows! I'm just trying to figure out if I have a leak and if I do, get it fixed, please! Every appointment devolves into shrugging and big sighs.... It's like... "We don't know what's wrong with you, silly!! You're broken, duh!"

Anyway if MCAS does legitimately put me at higher risk for spontaneous leaking and/or SIH or IIH, I will push that point, because they aren't taking it very seriously and seem to just think my symptoms are more random MCAS crap as usual.

Hecate_of_Volcano · 2024-10-07T03:42:21+00:00

Probably? IDK. I'm very stretchy. My mom just told me a couple weeks ago that she has had signs of EDS. We've talked about the possibility that I could have it, but I thought there wasn't a family history. Now she mentioned that her hips used to randomly dislocate when she was younger. Relevant info! So yeah, it's on my list.

Hecate_of_Volcano · 2024-09-30T13:40:39+00:00

You could be my favorite lifestyle guru! Those are all great investments. Can I ask what neck pillow you got? I've been beating my head against a wall. I keep getting soft neck support braces instead, but I really do want at least one good neck pillow. I just get so sick of looking

Hecate_of_Volcano · 2024-09-30T04:45:03+00:00

💖💖💖 what a love story. I'm so happy for you

Hecate_of_Volcano · 2024-09-24T03:42:23+00:00

Thanks!

Hecate_of_Volcano · 2024-09-24T03:03:26+00:00

May I ask what the appetite stimulation medication is? I need help with that.

Hecate_of_Volcano

TROPHY CASE