honestly, i've just accepted bechloe sharing the pullout sofa in the new york apartment with amy as true so hard, that i can't even recall if it's canon or just a hc? educate me lol
hi all, would you be willing to share some things with me that comfort you when you worry/are upset about thinking you have overexerted? is there anything anyone else can offer when you feel this way, whether your feeling is justified or not?
hey!
i've been spending a lot of time thinking about how to broaden people's awareness of ME and how to contribute to increased funding etc. i'm wondering if there is an established activism group or something that operates in the netherlands, whether it is a dutch based or internationally active group? or are any of you interested in creating one? maybe we could go flyering or putting up stickers/posters?
thanks in advance for commenting!
hello!
so my partner has longcovid/ME, and has been bedbound for months. in this time, i have spent a lot of time thinking about how to help raise awareness (and potentially funds) for the illness(es) in a way that i can do time-wise while being my partner's primary caretaker.
i would like to start a social media (tiktok, instagram) presence where i make video's following trends that are getting a lot of attention at that point, featuring a voice over that either explains stuff about the condition(s), or shares someone's story with the condition(s), or directs people to resources. who knows, myabe they'll get some attention and educate some people that would otherwise have no clue!
so, i was preemptively wondering whether anyone would be interested in having their story shared this way? it can of course be completely anonymous! i'll record the voice over myself, and can use a fake name for anyone who so wishes (and the opposite, i can also tag/credit you if you want!)
TLDR: starting a social media presence to raise awareness, would anyone like to share their story?
hey all,
my partner has been stuck in bed for months post-crash, and isn't seeing any improvement yet. she is terrified of getting worse, and i want to make sure that in case that does happen, i have arranged access to any meds that may help in that situation. especially since in her current states she already has periods of pure agony, so if that becomes more permanent she needs help to get through it. i'm wondering if you have any recommendation for painkillers etc to ask the gp to prescribe just in case?
thanks in advance for commenting!
i need to get this out. advice always welcome!
my partner (in her 20s, as am i) has been bedridden for months. i am her primary (and sole) caretaker. i try my absolute best to do right by her, but i feel like i am messing up at every turn. it seems i manage to upset her at least every other day, and i wish i knew how to not do so.
for example, she has expressed being scared when i don't check in for a few hours, because she is scared of suddenly ending up so severe that she can't call me. so i make sure to check in with her every one to two hours, except overnight. now, i upset her by waking her up accidentally by entering the room before nightfall when she is taking a nap. or, another example, she asked me to help her pace and not talk too much. but when i try to end a conversation, she gets upset at me for leaving.
i am not posting this because i am upset that she gets upset at me. of course it's not nice, but she is in a position close to hell right now, and i can't imagine the emotional burden that puts on her. she has every right to have a short fuse right now, and to be demanding, and to be upset whether it is rational or not. even if she's blaming me just so that she doesn't blame herself, if it helps then she can go ahead! i just wish i didn't upset her all the time. i wish i could prevent it somehow. i don't want to add onto her already terrible days by making her feel poorly about something i did/didn't do, but i keep doing so. i know it's not intentional on my part, and probably not always preventable, but i get so frustrated with myself for not being able to do better. this sucks.
on the bateman horne website, it says cognitive impairment, PEM, and unrefreshing sleep must be moderate-severe and present >50% of the time. what does that mean? how do you know your symptoms qualify?
hey everybody, my partner (bedridden 2+ months) is suddenly experiencing moments where they are completely absent but awake. for example, i will leave the room and re-enter an hour later, and she thinks only 2 seconds have passed despite feeling fully awake.
she used to suffer from derealization as a teen, and says it doesn't feel like that, or like startling awake. she usually has like 5 trains of thought at the same time, and after these moments of absence she can't remember having thought about anything.
does this sound familiar to any of you?
hey all,
my partner's been bedridden and having daily severe PEM episodes for two months now. she feels unable to handle this much longer, and i'm trying to find out as much as possible and drive her doctors to help.
her gp finally had contact with an "expert" internist from a center specialized in PAIS and ME. they spoke for a long time, and the internist advised the following things:
try to help her manage her episodes to the point of being able to leave the bed/attend doctors appointments when needed. the internist recommended starting with a very low dose escitalopram, potentially desloratadine for MCAS (unsure if she has it), and finally LDN.
i know that introducing meds during (recovery from) a crash is risky. however, she is suffering extremely and i am running out of alternative ideas. she is currently only on ivabradine for her symptoms, and takes omeprazole and painkillers as needed.
what is your take on this?
i'm autistic and struggle to match descriptors and the sensation they describe. could you help me find out what fatigue really is by describing how it physically feels for you? thank you so much!
hey people in the netherlands,
do any of you have experience with dr. jorn heeringa from the praktijk voor integratieve immunologie (pvii) and DC klinieken? wondering if this is worth a shot, or if it's all snakeoil stuff?
i moved from having pem episodes nightly to being in constant pem. i'm bedridden, my partner and mom take care of everything for me, all i do is use the toilet, have liquid nutrition and the occassional rice cake, and thats it. i barely talk, dont use screens, basically don't do anything but lie in bed wearing an eye mask and earbuds. what am i doing wrong?
Hi,
I've been really struggling with finding the best way to emotionally support my bedridden partner. She has been stuck in bed for about two months now, and it seems it will continue this way for a while. She is currently quite severely unable to handle sensory stimuli, and spends most of her time wearing an eye mask and earplugs. Unfortunately, she is quite a thinker and doer, so having to spend so much time doing nothing due to a disease with no easily rationalized answers is incredibly hard on her.
I want to do right by her, but I am finding it so hard to understand what that is. On the one hand, she gets incredibly stuck in her head, so at moments where I can see that it is eating away at her I want to give her the opportunity to have a short conversation with me about what's plaguing her mind. On the other hand, I obviously want to protect her health and limit stimuli and exertion as much as possible right now.
It seems she doesn't know what the right way is either, which makes sense with such an incredibly conflicting disease. She tells me that she would appreciate it if I'm strict with her, to make sure I help her pace and limit exertion where possible. If I do that and cut off conversations when I think it's needed, or I limit my time in the bedroom, she gets upset because it seems I'm not taking her seriously. When I have a conversation with her (because I think otherwise it will cost her more energy internally) and am outwardly not quite as strict, she feels upset because I am not helping her halt something potentially dangerous. I completely understand the horrible position she is in, and definitely don't blame her for the upset she feels. I can't imagine how someone wouldn't be upset any which way when they're stuck like this.
I should say, I am autistic and find it really hard to put into words the rationalizations for my actions and feelings, and sometimes to understand how to deal with other people's requests. Like for example being strict: how strict is strict enough? When am I going too far? Not questions I expect you to answer, but some context.
I want to find the best way possible, but am finding it super hard to get there while only relying on my perception and hers. I would be super grateful for some input from you all <3 Thank you in advance for your thoughts and comments!