u/emochristianmusic

If I can accept this I think my life would get better. The expectation leads to disappointment but it’s hard to not have it, or wish for it. Any tips?

I’m having a hard time with friends. To me it feels like invitations are selfish. I’ve shared many articles, posts and videos. Even staying vulnerable and sharing my journey on my close friends story. It seems as though when they want to spend time together it about them meeting a need and both the both us meeting the need of seeing each other. And I’m tired. Because at the end of the day I’m the one who has to pick up the pieces of recovering from PEM alone. That can look like going hungry alone, unable to feed my self alone , and pushing my self just to use the bathroom. Alone. While they go on with their lives and lack of PEM. I’m sick of it.

Example 1. A friend wanted to visit for their bday. The back and forth texting started to make me feel guilty and I eventually caved and let them come. They said “I just need to get away from my life right now” as a reason for coming. I can’t help but think that you wouldn’t say that to someone with covid or cancer (just choosing widely known and experienced conditions). You don’t say to a sick person who you’ve seen decline “I need to get away from my life” after they tell you they’re too sick for visits. ITS SO FUCKING SELFISH! And I gave in. It took me 2 weeks to recover. While she went on able to go back to daily many hours work and her life she needed a break from.

Recent: a friend invited me to the beach. They said they want to spend time with loved ones which was touching. I had been missing the beach and they offered to pick me up and drop me off. It was still a lot. The whole day was a fight. I took many naps. In the car ride there, back and in the beach. They checked in today which I appreciated but their response to my response only reminded me that they haven’t taken the time to learn about my mecfs. I said I was in post exceptional malaise and will need to stay lying down for a week. Just to keep the response light.

Their response: “I hope you’re able to take care of your self today sorry about the trigger”.

This made me so sad because it’s so extremely difficult to take care of myself in PEM. I quite actually can’t. No one offers to help me through the symptoms they trigger. They just tell me to take care of it. I’m tired of helping others feel better when I’m the one who suffers. I hate pem is become so traumatizing for me. Esp because I don’t have access to caregiver type care.

I’m going to go back with not spending time with people who haven’t taken the time to learn it’s just not safe. This illness is so traumatic and I need to be safe emotionally and physically as I recover. Idk I just needed to get this off my chest.

This is one of the major reasons I’m scared for people to visit because even if we do everything within my baseline... feeling happy or excited will crash me instantly or lead to PEM.

I’m starting to hate when people call or text because I get so excited only to feel sick after.

I just recovered from having 2 visitors 2 weeks ago. Being alone with nothing invoking emotions is the best thing for me. I don’t know how to communicate this.

Anyone else? Tips?

I worked !!

- i work 2hrs/day - teaching an undergrad class virtually from home. i've managed to figure out a trick where every 10-20 minutes i show a video that explains what i would've said if i kept talking, they love the videos anyway and they always start a discussion. I teach psychology so the videos are often of like experiments, definitions, or concepts. and i get to take a break from talking. I also give a 10 minute break after 1 hour where i lay down with full on sensory deprivation. After I teach I go into ART for 2-3 hours. even though i've put so many things in place, from the moment i wake up - its never as good as it was today.

- I also got to work on a book chapter i'm co-authoring, i wrote what would equal a paragraph!

- I walked from my apartment to the elevator and to the roof, back down and back up again. This would probably equate to half a block or 1 short block lol. I did it without a crash.

- I also ate food without crashing after (not POTS or MCAS related), i go in and out of not being able to eat because of the digestive effort.

I became moderate in May, and it has been a tough adjustment. I had been mild for almost 14 years pror. i'm also my sole supporter, and i don't qualify for government assistance or anything because of my visa status. My health insurance is also tied to me being a student (im a phd student), and I had just started treatment for me/cfs so id lose access to it. It has been the worst time. I thankfully have really advocated for myself where my profs keep classrooms dim, i have been offered a dark room on campus to be in when needed, i'm allowed to not talk in class to prevent PEM, I can zoom into class as needed and be off camera, im allowed to teach only virtually, and most recently I became an ambulatory wheelchair user and have advocated for access needs. I can also hand in assignments late. I can also miss class...etc. It helps that I have an advisor who I've been begging to understand me. Without him and my persistence and honesty, this all wouldn't be possible. it also helps to have summers fully off so i haven't been in school since i've been moderate and as I became moderate was literally a month before I started treatment. I don't know if this is the result of protecting my baseline or the treatment is helping, or both, or just a good moment and ill crash after, but its nice to smile and feel a bit happy.

please only positive , encouraging or uplifting comments.

Thanks for listening and reading! :) :) :)

TW: mentions of eating/ could be triggering for ppl with ED

Hi, this getting chills and PEM after eating is ruining my mornings. But i have to eat because i just started treatment for mecfs, and my meds require meals. but even before the treatment, i just wasn't able to pin down why I was so cold every morning. Im only just now realizing its after I eat. It makes me not want to eat. I fear PEM so much. Any ways around this?

This happened last year and i eventally couldn't eat, or only ate at night since i was going to bed anyway or else id pass out and i had class. i lost 30 pounds... i have gained it all back and now its happening again.

I'm a photographer and i love it so much and i miss it so much. I'm quite good at it too, ive won awards and have even been recognized by natgeo in the past. However i can go 1-2 years without shooting. its the last hobby my health hasn't 100% taken from me.

Im shooting an engagement on Sunday and i'm so scared and nervous. I told them already that ill have to have a hard stop by 7. I will do my best to stay to it. the shoot is 5-7. and this friend is aware of my health. were classmates, and she is aware even though i can walk more than half the time i cant climb subway stairs or exert. plus i also have another friend who is coming who will carry my camera bag and help me with my wheelchair when im not using it.

this will be my first time as a disbaled photographer since my mecfs got worse, in nyc on an actual job that requires me to be physical, i really dont want this taken from me. I really didnt want to cancel because im so excited. but im so worried for PEM. The next day, i have something too. on zoom , where ill have to talk. so im worried for the back to back.

Any advice? Its friday today, shoot is sunday. Ive prolonged my anxiety for so long i cant let her down and ask to reschedule 2 days before. they are already engaged but im sure they have had like hair and stuff done already.

I guess im looking for how to manage after , for the next day and afterwords. i have so much anxiety over pem. pem is the most frightening thing ive ever experienced and im in it so much, but i wonder if my anxiety also causes pem lol. so just looking for calming advice. thank you

I’ve seen sick for a slow progressive 15 years, and I reached a point where once someone shows an ounce of not wanting to understand me from what I share or my personal experience but through what they think is right and correct , experiences of others , their own experiences - I no longer have patience or grace for it. It’s so disrespectful and inconsiderate. I can’t unsee it after years of patience. especially when there’s other people in my life who show me they atleast try

I dont understand how to manage being both heat and cold intolerant. there’s no way to ever be in the middle at all times.

Anyone experienced this before ? I get so dizzy and lightheaded. I’ve only tried it out for like 3 minutes just going back and forth. And I just read up on science of why. I also I saw online that you can buy cushioning to help with the vibrations ?

just a bit disappointed because I was so excited , I’ve tried other mobility aids each one causes a different symptom while alleviating the other.

eg.

cane - hurts my shoulder, wrist and neck (eds)

walker - ^ same as above just less

manual chair - i physically can’t propel myself (& weakness, same issues as above because of ed). but I will say manual chairs don’t make me dizzy, I just live alone and don’t have a carer that would help me push my self around if I had one )I used to and I have it away cuz if that

Hi, do other people get really cold? This has been a symptom for years for me. usually after exertion but sometimes random I haven’t been able to pin it properly. But I would say I’m also cold intolerant (and heat times)

for a example, I’m cold right now and about to try to warm my self up. i had been using my heater every day until my building turned them off for the summer /: I texted the super and he didn’t respond. Probably because he was confused why someone wanted it on in the hot weather.

But yeah to warm myself up - ill have to use my sauna blanket, set it to 159 degrees and even at that it can take up to 50 mins to an hour to feel warm again. the cold feeling feels internal and it’s like a burning chilly cold that hurts my entire body.

I just started using the visible band to learn to pace and I learned that baths can trigger PEM, that was something else I’d try to warm up, if I could turn the heat on too so I’m not cold after.

So I’m a bridesmaid and I’m VERY excited and so very honoured. My friend who knows me knows about all my health issues, and she knows I have me/cfs though I don’t think she fully or truly understands it. I have been in PEM and posting a lot about my experience, as I move through it and part of me felt like she could see it but was seeing it as a result of me not taking care of my self. She sent me this text, which was really well meaning… but I also can’t help but feel misunderstood by it. The weddings next weekend, I’ve already been really anxious, about disappointing her and doing every in my power to pace. I even bought the visible arm band. She had even told me before that she asked a friend first before asking me to be a bridesmaid because she worried about stressing me out, and so I’ve been anxious about proving her wrong.

What would u think if u had moderate me/cfs and received this:

“In the next couple of days I need you to take care of yourself and stay healthy please ❤️”

Thanks! I struggle a bit sometimes to understand things or have a proper perspective. Open to honest thoughts!

Anyone nyc based?

a bit about me:

- 28, bipoc, queer, in grad school

- my ME just became moderate … trying to hold hope that I can finish my PhD.. also have LC, POTS, etc.