u/The_Jawnah

Okay so I’m 20, and I’m on a waiting list for a cfs clinic here in the Netherlands. I’m currently not on any meds for my cfs, but I do take fluoxetine and HRT. I’m looking for some advice on what to do and how to stop myself from doing too much until the end of the year when I finally get help.

I’m pretty mild/moderate, I’m honestly really unsure because I feel like I am super limited in what I can do but a lot of other people’s “moderate” is more severe than me. I am not able to work, and spend a lot of hours in bed, taking at least an hour nap daily and laying flat helps preserve my energy.
But I can:
—walk my dog (sometimes 45min)
—go to the grocery store (they’re walking distance tho)
—if it’s planned go to an event for a few hours as long as I can sit down and don’t have “heavy”stuff to do the rest of the week
— draw some days, I can spend an hour or so on a drawing (in bed or at my desk)
— shower a few times a week
—make and prepare my own meals to eat
—recently started cycling to build my stamina/strength (max 15-20min and I feel pretty fit after)
—clean my room, I can vacuum, mop, dust and wipe down areas and clean deeply all in one go.

I really feel like doing more physically and like I’m super trapped because I’m usually too tired but just have the need to exercise and be active.

I also just started working on getting back to school, because I didn’t fully finish my education yet. I have some single subjects that I need to finish and then do individual exams for so I decided I will be studying history a few hours a week so I can take the exam next summer and take it easy cuz then I’m starting early. Any tips on how to do that, like managing how long to study, what kinda breaks to take and how to give myself more energy?

What else should I do while waiting for professional help? I’m trying to pace but I’m autistic and have no clue how my body “feels” and when it’s “too much”, just that I often get PEM, sometimes not too severe.

What should I absolutely not do to make myself worse? I already feel so trapped and want to be active and live my life like a normal person and it makes me really upset, sometimes I don’t feel like I have a lot to live for cuz my life is so sheltered.

The title sounds a bit harsh but idk how else to word it. My family life is really complicated, but I know my parents love me a lot and try to do what they can. I just don't agree with their decisions.
To start I have an older brother 21M, who is very special needs (autism, extreme aggression, some kind of personality disorder, he has the mental capacity of a child, then there's me 20M (I also have autism and a lot of permanent illnesses that affect my life a lot right now) and then there's my younger sister 17F, she also has autism and adhd.

My whole life as far as I can remember my brother has been extremely aggressive, and unable to be handled. He'd hit me in the head a lot as a child, I got a few concussions from him and he (accidentally) ripped out my baby teeth with the rope of a swing. He's been the center of my parents attention all the time, because he just needs a lot of help. And I get that, I really do because he needs a lot of help and he's just not able to care for himself.
My parents really tried their best to shield me and my sister from his abuse, they even went as far as to move my brother and dad into a separate apartment for a few years because he could not be around my sister and I.

I think | just secretly wish they gave him up, as a baby, or as a kid made sure he didn't live with us. Or that they just never had me. I still have nightmares about him chasing me and attacking me. He chased me with a knife when I was 13 and we were on holiday, and slightly grazed me. He choked me out till I almost passed out on numerous occasions. He'd constantly bug me, attack me verbally, try to assault me, would do annoying things like fart on me or try to spit on me, try to chase me with numerous things to scare me or to attack me with, he's tried taking my pants off as a funny joke a few times too.

He's attacked multiple caregivers with sticks and had the police called on him, and went to the police station himself to report our parents for "abuse" when he couldn't play on his computer anymore.
When I was 5 | got really sick and almost died, I was in the hospital for Lyme disease and my face was partially paralyzed. My parents still brought me to school looking like that, and I think it was because they just had too much to deal with that they couldn't deal with all of it even tho they tried so hard. I think a lot of my now chronic health issues are due to the fact it wasn't dealt with quick enough.
I broke my arm when I was seven (because of my brother but it was an accident)

My parents really really tried their best to give me and my sister a good life. They just didn't have any time for either of us. My brother was always first priority and now a few years ago he finally left the house and is in full time care, yet still all their attention goes to him. He calls all day everyday, he has so many problems there and the caregivers are shit.
It was obvious when he was a baby and toddler that he had stuff wrong with him and he was diagne with a lot of stuff when he was two.

I just wish my parents didn't have more kids. I wish me and my sister weren't here so they could have attention for him and not feel guilty about it, and that I don't have to feel like my life doesn't matter.
Either that or that they decided at one point he couldn't live at home anymore. He's very big (6'7 and 250 Ibs since he was like 14/15) and he often attacked my dad and me and my sister. I just wish they actually put him into a care facility earlier.

They really tried their best and I love my parents, but I cannot get any emotional support from them, and, I feel really shitty saying this, feel like I was pretty emotionally neglected my whole childhood, even tho they would disagree because they tried their best.
They did try their best, it just wasn't enough at all because there was no space for me.

They tried to love me but they didn’t have any time to. They never really initiated any time spent together or bonding either. I only remember always begging them to come play with me and them never having time so I stopped asking.

I have a therapist and she helps a lot and I’ve been trying to communicate more with my parents to possibly resolve some of this since I still live at home. It’s just really difficult to not take it personally because they constantly ask my sister how she’s doing, about school and her boyfriend constantly comes over and when he does they spend a lot of time with him and my sister and have dinner together and everything (I don’t wanna have dinner with them if her bf is there cuz it makes me uncomfortable), but they never want to spend any sort of that time with me. I know I’m an adult and should be over it by now but it’s really difficult

This whole thing isn’t just about my brother but also just about my parents not having any time besides work. They both work as teachers (have been for their whole lives tho my mom quit for a few years when I was younger) and are always gone from 7am to 6pm (has been this way for years). In the weekend they’re working or watching tv and I’m never really able to interact with them or interrupt. I’m doing this less now cuz I know it’s annoying cuz I’m an adult now but as a kid it was really difficult to stop craving constant attention.

I still really feel like that and I'm trying to overcome my issues but it's been really difficult because I'm pretty sick at the moment and can't study, and don't have any friends or anyone to get emotional support or any kind of love from (other than my pets).
Idk what to do about it, but if anyone has any advice on how to deal with this situation would be nice:)

Btw don’t worry I have a therapist that I’m working through all of this with, it’s just not been super effective yet

Im so confused cuz I looked fairly normal a few days ago, though my stomach has definitely gotten more evened out as to say by the fat redistribution, but today I look really big. Idk if it’s bloating, water retention or just body fat, I can’t tell cuz my stomach feels soft on the top layer but underneath it’s kinda hard, but i really dislike it because i have a lot of body image issues and I really wanna be leaner.
I’m not overweight, my bmi is around 21.5, but I’ve gained like 1,7kg in the last few weeks. My appetite hasn’t increased at all, if anything it decreased. I do eat a lot of chocolate lol so I don’t think I’ve been in a caloric deficit but I don’t think I ate so much that I gained a lot of weight. Will it eventually go away? I look really weird even in a T-shirt my belly sticks out a lot

Also I’ve been trying to exercise more but I have a lot of health conditions that make it very difficult for me to exercise other than mild cardio every so often.

Do you take any kind of pain relief like paracetamol, ibuprofen etc? I feel like I cannot function at all and my brain is super foggy if I don’t take painkillers, mostly because I always get so feverish and sweaty and I just cannot deal with it. My parents tell me I’m not supposed to take them unless I absolutely have to because it’s bad to take a lot of pain meds (I’m 20), but I don’t care that much about the harmful possible long term effects because I feel like I can’t live without them.
For reference I’m taking like around the maximum daily allowed dosage during a crash and when not in a crash maybe like 400/800mg of ibuprofen or paracetamol if I’m not feeling well. They don’t help a lot but enough to clear my head a little so that I can sleep for a bit or make myself some food.

Does anyone else take pain meds? I can’t imagine how people go without them

What can I do to lower my cholesterol? I literally do everything I can, but I can’t exercise much and because of my arfid i have a hard time eating super healthy. I don’t smoke, drink am not overweight etc but I’m always stressed and despite years of therapy it hasn’t really changed. What else can I do?