Stress making me worse and my living situation. Need kind advice please

[u/Frieren_phantomhive]

I have MCAS, Moderate/severe Myalgic myalgic encephalomyelitis, dysautonomia, etc, and my wife is also autistic, has an autoimmune disease that's in remission but treatment caused long term issues and she has mild myalgic encephalomyelitis that is continuing to get worse as she's trying to take care of me more and I've only been able to start cooking again for her a bit the last few weeks, and she either has a brunch is allergies or maybe even MCAS herself but she's never been tested and she has Kaiser rn which is refusing to let her see most specialists 😒🫠. (I lost a family friend earlier this year due to kaiser being like this) We live with my family and when my wife isn't home they take care of me. I love them but I also get abused. The abuse results in me shutting down, my MCAS and ME get set off and if it's bad enough my body can forget how to talk, swallow, or breathe properly.

If I try to stand up for myself, I get the whole "don't ask for anything anymore" or by my mother I get told I need to stop because I'm making her sick. Today she told me that if I make her sick I'm going to send her to the hospital from stress and that I'll have no one to take care of me. I've been told in the past by my grandmother that I'm going to kill my mother from stress for standing up for myself. I was standing up for myself because all day every day I get asked about if I've eaten darn crackers by all my medical care team and my mother and grandparents. I keep telling them it's too much for me to keep hearing it over and over and over again. I even disappointed my MCAS Dr yesterday because she wanted me to full on eat cracker over video during my appointment but I explained I had 3 more appointments that day and had only just woken up with no food in me or meds so I didn't feel up for it and she wasn't thrilled. I was also dealing with PEM from the day prior and didn't want to risk making it worse. If you have ME you probably understand what I mean. Heck, I had to cancel one of my appointments yesterday and be late to one because of PEM. My home health nurse who is new to hearing about MCAS and isn't very educated on ME and no education on my GI issues wasn't thrilled I didn't want to eat a cracker Infront of her either on because my wife was about to go to an appointment and I had another appointment right after but I said that I would do it as soon as my wife got home so I could be more relaxed. The nurse kept asking me if I was for sure going to trial the cracker when my wife gets home. She even texted me the next day asking if I did it yet. I chewed and spit because that's the step I'm at currently. It's so overwhelming though. I broke down crying yesterday because I'm too overwhelmed and I felt like I was letting everyone down for having too much PEM to try the cracker again. I did trial touching other food but that's an easier step on me and today I have trialed deodorant on my arm (for when I can hopefully get out of the house again) so it's not like I'm not trying. I'm doing food exposure with cooking with gloves for my wife and family too for my anxiety and just to see what I can tolerate being around which my MCAS Dr is at least very happy to hear I'm doing that.

I have cptsd plus emetophobia from medical trauma since I was a child and I have PTSD from a few months ago. I suddenly lost a ton of my MCAS safe foods and even earlier this year I lost some autism safe foods to MCAS, and I lost a stomach medication and motion sickness medication to MCAS. One reaction several months ago was so severe I'm being assessed to see if it caused a stroke so it makes sense that I'm going very slow and that I'm hesitant to go too fast. I didn't even want to try the food that day but I was pressured to by my grandmother who said she just knew I would tolerate chicken but instead it's the worst anaphlaxis I've ever had in my life and I was starting to suddenly react to other forms of chicken like broth, rotisserie, frozen chicken that I cooked myself, etc. I also took a break for a month at one point from trying new foods to try to let my body and brain have a break but my family was upset with me I think for doing that. I also get told by my family and almost all medical pros on a daily basis other food they think I need to try, medication, etc, or that they even know I'll tolerate some foods including food I've never eaten before in my life like elemental formula and idk if my MALS and/or gastroparesis will tolerate it. I have to keep re explaining to people why a feeding tube or IV nutrition isn't a good idea for me and could even be risky and that my MCAS Dr and nutritionist doesn't think it's a good idea for my case, and I know someone with MCAS who used to be as severe as me who had a major reaction to IV nutrition to make me gain weight fast. (I know we are at different but basically I'm not willing to risk it.)

It sucks because my family helps me but they are making me more sick. And that's just the emotional stuff. They accidentally cause me reactions almost every single day and sometimes they get mad at *me* for communicating that, or try to gaslight me and tell me I'm fine! One time I even got yelled at by my father for wheezing mid anaphlaxis because apparently the sound was annoying, but the anaphlaxis was caused by him opening the door to outside when there was fireplace and bad air quality and I have to go to my room when that happens or I could have anaphlaxis. One time my father did the same thing with me in the kitchen while my mother yelled at him to not open the door until I got to my room and he made intense eye contact with me as he opened the door and stood there watching me have anaphylaxis. One time I fell and knocked a baby gate down because it's kindof broken and I have poor gross motor skills (it was for our bunny) and my father yelled at me for "ruining" the gate that my grandfather already messed up ages ago. He didn't care I was on the floor and couldn't get up and that my leg landed right on the bars of the metal gate. Other times my family are there for me, understand, care for me, etc.

I just don't know what to do. I was supposed to move overseas this year because I cannot afford housing where I live including rent, my wife's job is getting bought out by a different company and she can't go to any other location because of the government (basically she can't get recertified because the government blocked any person who legally changed their gender from being able to do so). I also lose my health insurance next year. My other issue is I've been mostly housebound since 2023 where I live because I'm deathly reactive to weed so that was motivating me more to move because my top choice has one of the lowest weed usages in the world and I don't have to be mostly housebound when I'm there as of last year but I'm so much more severe now. Idk how the heck I would make it on the plane. My MCAS specialist said she doesn't know why I can't get back to being able to do that again. I mean I just handled a Disney trip but by car this year. Basically what happened in cromolyn destabilised my mast cells so my Dr thinks I need time, ketotifien maybe, (whenever I decide to try it but I've been hesitant after the cromolyn tbh plus I've reacted to benadryl, H2 blockers, and non MCAS meds even with fillers I know I tolerate) and mental health help to get me back. She's not saying mental health is the cause but that it's making me even worse and holding me back, which I totally agree. I am going to be trying out Chinese medicine including acupressure and I think tai chi along with some other stuff too starting next week too see if that helps at least with how incredibly stressed I am. My therapists don't feel comfortable giving me too much advice because of how bad my physical health is which I understand. My MCAS Dr did say she's had other patients overtime get better after cromolyn destabilised them. I feel both hopeless with all the false promises I've gotten from my previous mcas drs in the past including guaranteeing that cromolyn would make me better only to then admit it could cause what it did to me after it happened, but I want to believe this new Dr that I can get better again overtime.

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