Alone with Tmau and my brain

Hi, I’ve beezn reading all the posts on here. I was part of a group for a while but quite frankly I think I had shut off. So I became more detached from the world than I was before which was pretty detached lol.

I admire the bravery in which some of the info you have all shared on here. Forgive me for being blunt but I see many mentions of family and partners, my family do not care about this condition. I am just meant to have to wash three times a day and use a toilet when they think I need to go. Today because someone used a different detergent I smell bad. Now I’ve heard the word ‘sh*t’ more times than I care to. And I have a trash mouth :rofl: My friend even tried to make this condition as something they ‘absolutely understood’. They brought in other factors into the conversation, people do not simply understand how explaining and admitting that certain things, like food, products, a malfunctioned FM03 gene, other external odours, that the whole thing explaining and living it is F-ing ridiculous and mentally and physically exhausting.

Even when with another person simply speaking about the smallest of things I am completely alone, detached, I do not think that anybody gets that. Does anyone on here feel like this, or have you done? What got you out of feeling like this constantly, I know there’s bad days and good, through your posts I see that. Also I see there’s a few people who have faith as support. I guess I’d just like to know how you get back on some kind of level where I want to give a damn to fight harder.

Thanks guys, ladies, sorry it was an essay🤣

I understand how you’re feeling. The specialist told me that this situation is in my head, he refused to phone the contacts workplace managers, family members and friends that would vouch for my condition.
Living with this condition and not having a lot of medical help really does wear you down. It’s very mentally and physically exhausting. I’m pretty much trying every supplement available including digestives, probiotics, chlorophyll and alfalfa. I do my best to not eat the food that affects the body.
I’m not sure how I’ve made it thru life this long, I do know it’s a terrible and mentally exhausting condition. I think we all have good days and bad ….and to be honest some days are dark. I feel your frustration because I’m living the same nightmare. This week I’m getting a referral to a Gastroenterologist…it can’t hurt…I’m willing to try anything. I’m not looking forward to the procedures but hopefully there is help out there for us who suffer.
Let me know what works for you, I’m always searching for insight on this horrible disease.