u/Strong_Aerie_9031

thought i would share with you all :D

Julien’s voice works so well in this style of music too! i love hearing her collaborations (also been having lost weekend on repeat lol). It truly feels like she can do anything n I cant wait to see whats coming next!

I found it sweet that apparently both TSL and Julien have been fans of each other for years, and that the song was initially titled “Julien Hopeful” 😭😭

also, does anyone here have any fave songs from The Saddest Landscape? Id love to check those out.

Much love to you all <3

Ive been looking into it and how it might be helpful for energy, nitric oxide production and such, but id love to hear more experiences if anyone here has tried it?

It feels like my ability to communicate properly is so rare, even outside of PEM, bc i still have constant brain fog. Im really exhausted by how limited my life is cause of this fcking illness. I cant have healthy relationships because i dont have the energy to overcome my communication struggles. I cant bring things up in the moment or even address them at all because im so tired. i dont want to argue and i just have to sit on the discomfort because its easier but still feels awful. I hate it and i want to change but it doesnt feel like im making enough progress to keep people around. Anyone else in this position?

hey everyone. ive been feeling like its not fair to just live life as the host's identity only, i have a lot of inner tension about how i show up /who in the system gets a say in how we present to the world. Do you all agree on a singular "mask" so its not just one alter that gets all the attention/responsibilities? Or are there other ways to go about it? Thanks in advance

At first i thought it would save energy, but the lengths i have to go to checking the "resources" it links doesnt save energy. Seriously, i rarely ever found it to say anything from the sources it claims to refer to. So in the long run, it was so untrustworthy that it only caused more issues, its saved me more energy to turn it off and look in the actual articles myself.

I hope this is helpful to others, i wish i learned it earlier and saved the time and energy!

When i was more severe it was simpler - i had to push everything else aside and focus on strict pacing. Now im doing a bit better i have to address my EDS, POTS, SIBO, MCAS, spinal issues, migraines etc, on top of trying to get used to the world again. its a lot.

My question is, how do you decide what to focus on? and what are the simplest things you were able to implement to your life? i also cant afford any professionals so i have to research everything myself

All i do is sleep and eat, on a good day maybe i get to watch some youtube or draw but i dont know, i feel incredibly unsatisfied. I technically can force myself to do something but it would come at the cost of my health and stability. i feel uninspired. I dont know how to do anything with my life and i hate it

I miss the friendships i used to have before i prioritised my health, and stepped back. i feel so selfish for pushing away people who used to help me but then made me worse. The way this illness changed me just made me unrecognisable, unrelatable. Kind of bitter and lost and angry.

i wish i could have ambitions and follow through, thats what makes most people think im miserable to be around. Because they want their lives to go somewhere and thats the opposite of how i have to live. Theyre scared that will rub off on them. But i still want to do things!!! so badly! it just makes me unwell

Im tired of feeling so ungrateful. im tired of people seeing me as a shut in, hypochondriac, cold/rude… i wish i had the energy to socialise, especially locally.

i dont want to be alone but being around people is agony for me. nothing feels right but i miss friendship and i miss not caring if it hurt my body

To my understanding at least (looking at the wikipedia for cgrp meds). I havent been able to try the other cgrp medications, so ive been using thc/cbd edibles a lot and i found it helpful, so im assuming this is part of the reason why it helps so much. Theres also the cannabinoid CBN (cannabidol) which can help while being less psychoactive but i havent tried it - has anyone here tried that?

Anyway just thought this was cool, feel free to share your experiences or insights though :-)

I want to have more hope in life, for a decent treatment, and just that things will be okay in general. What are some things that give you hope for the future?

i think a lot of my relationships (of any sort) fail because i dont have the energy to navigate conflict/tension which is a natural part of any relationship. I feel like i just have to act like everythings ok because i cant risk PEM or losing any more support idk. But there has to be a healthier way cause i just end up resenting people and it makes it even worse. I would love to hear thoughts on this

Im just kind of grieving a loss of the relationships i thought i could manage

Im overwhelmed by all the options. Im able to tolerate dim natural light and open windows now, getting out of bed a bit more - which is incredible but now I feel like i have to be achieving something or socialising but i just have so much dread. Im scared i will overcommit and get worse. I dont feel like ill ever belong anywhere in the “real world”.

Now my other conditions like hEDS and adhd and autism are demanding my attention too. And i dont even know if im actually doing better cause im brain fogged and mentally exhausted. My brain is still all over the place really, i just wish i got to truly enjoy my improvements idk if that makes sense

i never responded to psych meds probably bc id just been stuck in bed still. I wondered if anyone helped this symptom bc the depression is 100% making me worse physically and mentally. Especially having to pace emotions, the depression is something i really need to address

Im kind of just drifting through life but i still feel like i want direction or goals to work towards. I dont know if its pointless to because its easy to fall into “pushing yourself“. Whats been your experience?

Im so impatient when im already implementing things and need to give them time, my brain just wants to try something new all the time. I think i just cant cope with the ways that this illness impacts me, so i feel compelled to always have to be trying something.

Trying to get better isnt bad in itself but its like i can only get a week max into trying something (obv no huge improvements) before its onto the next. I feel like i just cant deal with the feeling of letting people down when im not trying things.

Everything with this illness feels like “damned if you do, damned if you dont.” I want to go to therapy too but thats also another huge commitment and stressor

TLDR I just want to fix everything about myself and its exhausting

a lot of ways that are supposed to reduce exertion require having people come and do things for you like cooking or cleaning but that is triggering for me tbh. im just wondering if anyone else is like this and has any tips?

im trying to eat meal prep cause im poor but my brain only wants snacks and fast food, its so exhausting. Im trying not to be angry at my body and the situation in general but i hate it, i dont feel like eating anything really. But i also dont have the money to buy expensive “safe” foods all the time. Not to mention all the energy wasted trying to make and eat food only to be unable to finish it

i spent last night making some rice thinking id save money and have food prepped. Of course PEM hits and today im ironically too sick to eat it. My appetite and tolerance for food textures goes out the window when im in a flare. I was able to have some apples instead and they were good but nowhere near filling enough.

I was hoping to not spend extra money or waste food i prepped myself, but seems like i might have to. I hate this bc im also saving up for specialists and im just poor in general

I get air hunger and some sort of dysfunctional breathing (i have EDS and POTS) so i do breathing exercises tailored for those. Im medicated for POTS and drink 2-3L water daily but i still find myself out of breath. Im wondering if just its not getting better because the symptoms like fatigue/exhaustion, OI, are from the ME/cfs. Or if anyone here actually improved this symptom regardless of whether its cause of ME

Its so hard to just plan for a life ahead i guess. I cant form healthy relationships when im too tired to communicate. No friends or family left. I want to connect with other people but i cant. I wish i could at least do a hobby or something but i always overdo it and it hurts. All i do now is window shop online or scroll reddit too tired to even interact much. I need to sleep but my life is so empty. I dont know what would actually be fulfilling for me to plan ahead for when i know nothing is accessible