u/WaysideWyvern

I’ve noticed that in nearly every recovery story or framework, they will list “fix your nutrition” as one of the most important points, but then never elaborate. I find this so frustrating because, as anyone who has dealt with health issues knows, ask around and you will be told 100 different optimal diets, which if you followed each one you would not be able to consume anything, ever.

I am endlessly frustrated by this. It’s to the point where no matter what I put in my body, I feel guilty. Literally everything. Because no matter what, someone has told me it’s the culprit. Trying to keep track of it all to find my “optimal” foods has just proved completely fruitless. The reflux and HI are nearly impossible to track. Reflux is generally triggered primarily by stress. HI is generally correlated to higher histamine foods but not always, and I just couldn’t keep the diet strict, everyone disagrees on what is actually allowed, and I break it all the time, and the effects are so hard to distinguish from my regular every day suffering, and sometimes I’m too tired to make more appropriate food. I’m tired of feeling guilty no matter what I put in my body. Every time I have a symptom it feels like personal failure because oh no, what if it’s because of what I ate. I genuinely have not felt good about a single meal I ate since I became aware of all the diet stuff. Even the “healthiest” most balanced meals.

I would love to know what successful “fixing your nutrition” actually looked like for people. Or if it wasn’t a part of it at all. I’m tired of worrying about it feeling like I’ll never recover because I can’t crack the secret code. One day gluten will make me feel better and another it will knock me out. I’ll get hives from a food but feel energized and never crash. Dairy either soothes my stomach or makes it worse. I feel like crap if I don’t eat greens but I can’t digest them well. I’m just sick of all the conflicting information both from people and my own body.

I can see them in other subreddits but not here. Just me?

It’s gotten worse. At first it was just nerve pain on my left side. Then it became base skull pain on my left side. Now it’s non stop base of skull, neck pain radiating down, pressure in my ear and sinuses 24/7, grinding, popping, and now there is no position I can sleep in, can barely lift my head, and the pain is radiating down into my spine. Nothing alleviates it. Heat and ice don’t. Soft collar brace doesn’t.

I’m expected to just live like this. It’s fucking ridiculous. I got this from a head injury, my whole illness is from a head injury, and yet nobody seems concerned. They just gave me pills and wave me off. If it’s CCI I don’t even know what to do. There is basically no information online about that besides some elusive Facebook group that has denied me entry for a whole year, I do not know why, they just never accept my application. Treatment and testing for CCI is not covered by insurance from my understanding so I’m just fucking screwed if that’s what’s wrong. I’m so scared. My neck has just been slowly failing the last year and I’m powerless to do anything. Why won’t doctors take any interest?? Like this shit I’d fucking crazy it literally grinds and slides. One time some nerve literally snapped out of place and I like couldn’t turn my head at all. It currently hurts to breathe because of the pain in my spine. This is so fucked.

I stopped my trial of Ketotifen after 4 weeks because it got to the point that couldn’t remember conversations I’d had earlier that day, sequences of events in my life, art my sister had made. I was just living in this fog. I was also severely depressed. I stopped and my depression immediately lifted. My brain fog is still here but lifting a bit. I had tapered to a low dose slowly, was taking it at night. Didn’t feel any symptom relief either. For a whole year I’d been gearing up to try it, hoping that it could really help. I’d already failed taking Pepcid because of cardiac side effects. Is there hope for me even if I can’t tolerate these drugs?

*I’m not talking about activities that cause PEM. I mean small activities that don’t feel particularly difficult, but use up energy nonetheless. Things that I can do everyday and never crash, but that take up energy. I’ve never crashed from something that I would call pleasurable because I only crash if I “push” and pushing isn’t pleasant at all. So I didn’t think to phrase it differently

I basically don’t limit myself if something feels good. So like, if I want to do something, I do it unless it actively and quickly making my symptoms worse (in which case it would stop being pleasant).

I will go and make the food I want to make. Even though I didn’t need to, I could have eaten something simple. But I wanted to make baked pears with homemade crumble so I made it. It takes energy though. Energy I could have used to, say, do some dishes, or scrub my toilet, or perhaps most crucially, could have just kept unspent to build my capacity.

I’ll talk with my sister until my brain starts slowing and not working. I don’t ever stop myself until I feel the symptoms. Even thought it drains me. I only stop if it becomes unpleasant. I don’t know how to stop myself if I want to do it and it’s enjoyable. It doesn’t make me crash, but it does deplete energy.

Lots of other examples of things like this. Things that I do for enjoyment, that fly trigger PEM, but do take energy. I have a feeling that this approach is missing something, because I feel like I burn every last bit of energy I have every day which leaves me with a bucket that can easily tip into crashes if I have to do something less pleasant (which i sometimes have to do). But denying myself of pleasures makes me feel…well, an immense and suffocating lack of pleasure.

I’m wondering how people who have successfully practiced pacing approached activities that are enjoyable/pleasurable in a healthy way.

Opening Thoughts

My life is hell
I want to be well

Dead Tree

Do you remember the before times
The more times
When life weren’t a bore, times
When your fingers wrote more rhymes,
‘n your body made steep climbs,
On cheap time
This deep grime

That’s within me
Now it dims me
Makes me flimsy
Sort of empty
Like a dead tree
But they still see
Just an angsty

Little flower
Take a shower!
You need water, sunlight, can we say it louder?!
You expect to sleep when you’re in bed for every waking hour?
Feel your power!
As they leer from ‘top their decorated towers
You hold your tongue, and fight the urge to glower

Cause if you don’t they’ll know you fucking hate them and then they won’t give you the medication and referrals you need 👍

The Swoony Spoonie

The swoony spoonie doesn’t care
If she’s bathed, or washed her hair
Cause when she’s stripped her body bare
They still tell her she’s pretty

No, you can’t get her alone
But you can see her on your phone
In her cotton sheet-set-throne
Sucking on her titty

Closing Thoughts

Moments of lucidity never go unpunished.

I think there is something so sick about modern social media that it just pours disturbing awful stuff into our feeds without warning. Like I’ll just go to Reddit to look something up and accidentally come across something so sickening that I feel ill for hours. Or on Instagram just scroll and accidentally see something horrible violence. It doesn’t matter how much I try to curate my feed, there’s always things that slip through the cracks. I don’t understand how people just go about their days reading this stuff. It affects me so badly, feels like I’ve been poisoned. Has anyone found strategies for dealing with it when this happens?

I’m 23 but my dad has been showing early signs of cognitive decline for a few years. I’m housebound reliant on the support of my family. Knowing my dad’s personality, being stuck here with him in the later stages of dementia will be fucking hell. I can see it now. His worst qualities will just be exaggerated. Every day will be torture. It will probably be scary. Even if not, even if he just becomes confused, it will be heartbreaking. I’m worried about how I will possibly stay stable while that happens. It will be years of misery. I feel like I won’t survive it. I actually think part of the reason I became sick was because of a nervous breakdown I had when this first started happening. I also hate knowing that this will probably happen to me, too. Like so I’m gonna suffer my entire life and then die in the most horrific way possible, losing my faculties and personality. It’s like this ticking time bomb. And I have to witness and be alarmed by it every day. If something happened to my mom…I don’t even know. I don’t know how any of us would survive. I feel like I should be prepared for that possibility but I don’t even know how. I haven’t even been well enough to be able to do the work to apply for SSDI.

Does anyone have podcast recommendations that they feel have helped their healing journey? I’m trying to reduce screen time by just listening instead of watching YouTube

I identified a problem I have suffered for years at this point. I have never had the best hygiene due to fatigue and sensory issues. I developed a severe chronic illness and now it’s even worse. I’m just too physically limited to keep on top of it. It’s a huge project that is always one step forward four steps back. I would really like to take up witchcraft but the clutter and dirt, including on my body, just makes me not want to. For example, I had the idea of turning bathing into a ritual so that it will feel more tolerable. But magic-afying doesn’t work very well when there is so much gunk, and hair, and an overflowing trash can, and piles of towels, and all this stuff that I can’t do anything about right now. I want to do grounding work in my bedroom, but all the surrounding piles of things, pill bottles, dirt, just makes it feel like the energy is disrupted. There is no clear energetic space to do the work. I mean there isn’t even physical space for anything really either.

The problem boils down to the fact that you have to have some level of presence or synergy or connection in order to do rituals and spell work and etc, but my space overwhelms me, and feels like it poisons everything. Kind of like, doing witchcraft, or even just basic self care, on top of all this would be like painting over mold. Like you can’t do the thing when the foundation is rotten. But I’ve never been able to achieve a foundation which isn’t rotten, so I just never start.

CW: SI, abuse

I was at times very emotionally volatile as a child and even a teenager, especially towards my mother. I don’t think I treated her very well all the time. I remember she worked so hard for me and our whole family and I would throw fits over things, like if she messed something up (like forgetting to buy what I asked her to help me get from the store that I was counting on for my lunch the next day) I would have a meltdown and act like I’d been personally victimized. I’d always apologize after but it was horrible. I would always be watching myself and think how horrible it was but I felt out of control. Almost like an evil alter ego. I’m so disgusted with myself just writing it. Her dad was an abusive monster and I have this fear that I got his genes. I’m worried I have some of his evil.

What is confusing is a I had a very happy childhood and yet I’ve always had symptoms normally associated with trauma. But I have no trauma. There is no explanation for why I always acted that way.

Nowadays I am very sick after concussion/covid. And my mom was so caring for me at first. She is the reason I am alive. I was at risk of starvation due to being too weak to eat. But as time has gone on, something broke in her, when I was having suicidal ideation over my illness (I was so ill I could not sit up in bed, speak, look at screens, etc.). To be very clear I did not, and would not ever in a million years, threaten suicide. But I did say often how much I wished I was dead. Which really upset her. At the same time, she told me that if I was sick forever, she would put me in a care home because she didn’t have kids just to care for them like toddlers until she died. Now, a year on, she won’t seek out my company, doesn’t initiate hugging me, none of the things she used to. She has this withdrawal from me and I know it means I’ve hurt her. The only time we still are close is when I am comforting her over my dad becoming a crazy person in his old age which is very hard for her.

Anyways the point of this is that I don’t know how to fix my nervous system when it seems that the only villain who is destroying nervous systems is myself. And I’ve always had this feeling ever since puberty that I was fundamentally a bad person which doesn’t even make sense because I was surrounded by nothing but love and unimaginable patience. Nobody, and I mean nobody EVER had said these things to me but myself, so I only have myself to blame. I’ve always felt like I was just vomiting all over everyone else’s life.

I’m so confused because like, at the beginning, I was much sicker. But somehow, I had all my mental faculties. I was actually remembering everything quite vividly. But after a year of severe ME, just recently I got completely scatterbrained. Like, just slow. SO slow. I keep embarrassing myself, making obvious mistakes, misunderstanding things, forgetting stuff. I’m scared cause I was always so grateful to still have my faculties even despite all my other neuro symptoms. Somethings just felt very not right. It started around whne I began taking Ketotifen but I’ve stopped taking that now and it’s still happening. I feel like I’m 85 but I’m only 23. Will it just get worse and worse? It is neurodigeneraton? Or just regular Brian fog that can be reversed? I’ve always had adhd which can create forgetfulness but this has been like full on taking multiple minutes to access a memory or not remembering something recent happened till I’m reminded it happened

I keep seeing people on Instagram or on here and all anyone will talk about is how much they hate Milo’s mustache. But I feel like I’m going insane cause it genuinely does not bother me at all 😭 I think he looks good?? He still looks like Flynn to me. Just a different version of him.

I mean, I have SO MANY concerns about the movie. SO MANY. But the mustache just isn’t one of them at all. I think it suits him? Idk I just feel like I’m in a different planet.

Not completely. Because I don’t have traits like FPs or manipulative/people pleasing tendencies. And I don’t have identity problems really. But it’s made me super sensitive and upset all the time and the way I feel reminds me of the way my BPD friends talk and react to things. Like just soooo upset and hurt and mad at the tiniest things. So easily activated. It started around the time I started taking LDN too so maybe that’s involved?

Like, for example, I was asking for advice somewhere about getting out of a horrible depression rut, and someone commented “the best thing you can do is get up to see the sunrise every day. This is the most important thing, do this and you will slowly feel better.” And I felt SO MAD. Because I have DSPD and it genuinely wouldn’t make me feel better. But I also feel mad because I love sunrises, and my whole life I’ve felt upset that I cannot wake up every morning to watch them. So I hate that it’s being rubbed in my face. And I get angry because I’m already imagining some bullshit response where she tells me that I’m wrong, and that I could change this thing about myself if I just tried hard enough, even though I was forced to sleep and wake like that for school for my whole life and it made me sooo unwell. Because I have a different natural cycle. I felt so angry and upset. I started crying and wrote a slightly defensive response and downvoted her comment and then took away my downvote in guilt because i knew she didn’t deserve it. I know she was technically trying to help but I can’t even feel grateful I’m just mad. I’m still upset. I feel upset that I cant guarantee that she’ll respond and say she understands. I need to be understood. It’s actually ridiculous how much it upset me. It usually fades when I step away but a feeling like ive just been drained replaces the frustration/anger.

In my old life, I would’ve just said “I wish I could, but I have DSPD, so it wouldn’t be healthy for me :(“ and literally not thought about it again.

This type of thing happens multiple times a day. Never at things irl but online constantly. I feel crazy. I hate that feeling of anger/frustration. It’s always when I’m being misunderstood that I get like this. I cannot STAND being misunderstood it just makes me want to scream and smash my phone. Ofc I don’t do those things, I just cry but it’s unbearable. I don’t understand why this is happening to me.

At this point my sleep schedule is falling asleep around 8am-12pm and waking around 2-6pm. What this means is that around 11pm is like my “afternoon,” and I’ve always been an afternoon nap kind of person. But it’s 11pm so it feels like I shouldn’t nap. But maybe if I just start giving into the napping instinct, I can turn my “nap” back into my night sleep, and my daytime sleep into my nap again? Or is that gonna backfire somehow.

I genuinely do not feel human anymore. My mind is a dopamine craving fuse with nothing but a sucking endless hunger for a year and a half’s worth of good experiences that I did not get to have. It’s like a debt of endorphines. I am going absolutely stir crazy. I spend ALL day switching between 10+ different chats and posts on the internet. I check my notifications hundreds of a day. I watch videos when I’m not doing that. Before I was sick, I could handle being alone so long as I could go out and walk, take myself places, see nature. I liked it back then. But I cannot be alone like this. In these same walls I’ve been confined to.

When I try to quit my phone, I crash. When I go outside, I crash. When I see friends, which I barely have, I crash. I’m truly no longer human I am just a broken machine for consumption. It’s changing my personality. I feel so activated and upset all the time, and so sensitive. I try to do other things but my mind will not engage. I try to read books but it’s too hard. I try to do meditation and regulation activities but the sucking need for dopamine wins every time. My body doesn’t even know how to put up a fight anymore. I was doing better a few months ago. Now I am more trapped than ever. No energy to keep up with all my pills, and diet. Or my dehumidifier, or cleaning for dust mites. Everything gone. I have no sense of time. My memory is worsening. I cannot take SSRIs so please do not suggest. I am already in therapy but there is only so much they can help with. I genuinely don’t think I can stand the isolation any longer. But anytime I try to break it I am bedridden. People say to meditate, to do hobbies, etc. but this burning sucking hunger for dopamine and connection is too all-consuming.

This happened to me around the 1.5 year mark of covid lockdown too. The exact same dehumanized feeling. But how did I get out of that? I went back into the world. Because it was opening up again. And I got better. I can’t do that now. It’s horrifying. I’m at a loss. It’s so unbearable this is inhumane it’s pure cosmic cruelty. I haven’t been to a friend’s house. Or a coffee shop. Or a play. A movie, a library, a park. I’m just a vessel for algorithms to feed on. How do I escape.

I was a late bloomer and didn’t experience a relationship until I was 19. I had longed for one since I was 11. It was always what I dreamed about and idly fantasized about. I loved having crushes cause it made life so exciting. Obviously it’s not the main point of my life but it’s something i always cared about. When I finally gained the courage to start dating, as an adult, it made life so fun. Getting to flirt, to feel desirable, to get to know people on such a deep level, to have that type of physical intimacy. Even though I didn’t actually date that much, I just enjoyed having it be something I was pursuing, and I dreamed of deep romantic love.

But now I’ve come into a very serious health situation where there is no way to date. It will likely be many years until I improve, if I do at all. (EDIT: to make very clear this condition is severe. I cannot walk, often cannot speak, and every day it is a struggle just to eat. It is like being on chemotherapy but for years on end. I am desiring advice on how to deal with being single, not how to find companionship. Companionship is not an option)There is no way to even have crushes because unfortunately I am confined to my home and never see anyone. I do not even have the energy to see friends nearly at all. I have had to make peace with the loss of everything in my life. Other things, are much easier to make peace with. No work? Spend your energy on getting disability pay. No hobbies? Find super slow ones to replace it. No socialization? Chat with people online. But there is nothing to replace the desire for romantic feelings and experiences. I can read romance stories and try my best to foster my platonic relationships but it that only does so much. Please don’t downvote me, I posted this somewhere else and they all downvoted me and I don’t even know why. I’m really struggling with this and I feel like that’s understandable so it just really hurts.

I was a late bloomer and didn’t experience a relationship until I was 19. I had longed for one since I was 11. It was always what I dreamed about and idly fantasized about. I loved having crushes cause it made life so exciting. When I finally gained the courage to start dating, as an adult, it made life so fun. Getting to flirt, to feel desirable, to get to know people on such a deep level, to have so much fun. Even though I didn’t actually date that much, I just enjoyed having it be something I was pursuing, it was always a focus in my life that kept my spark alive. And I dreamed of deep romantic love.

But now I’ve come into a very serious health situation where there is no way to date. There is no way to even have crushes because unfortunately I am confined to my home and never see anyone. I do not even have the energy to see friends nearly at all. I have had to make peace with the loss of everything in my life. Other things, are much easier to make peace with. No work? Spend your energy on getting disability pay. No hobbies? Find super slow ones to replace it. No socialization? Chat with people online. But there is nothing to replace the desire for romantic feelings and experiences, and so I just ache with it every day, this deep yearning, that I know I can do nothing about. It would help even just to have a crush but there is just no one. I feel less alone than I ever have. Fantasy has stopped working because it’s been so long now that I’ve had anything to spark a fantasy. I just have this feeling like this is the time in my life when I’m supposed to be experiencing these things and I don’t know how to find peace without it. Like the standard advice is to work on yourself and build your friendships and all that but what do you do with the deep nagging longing and sadness?