Complex patient struggling with medical care and burn out - please help
I desperately need help, Even if it's not a solution I just need to be told that I'm not alone because I feel so alone. I don't feel like anybody in my life understands my fear surrounding this topic and I just need to talk this out and maybe get some ideas on how I can better care for myself. I've tried to talk to my partner about this and they don't seem to take it very seriously but I mean, what could they even do..
I have so many diagnosed and mystery disabilities and chronic illnesses. I'm on medication for a lot of them, some I need to wear clunky hard braces on multiple parts of my body and they're very hard to put on, I also need a BiPAP at night or else I could die, I also have diabetes, and pancreatic insufficiency, and severe gastroparesis, cEDS, chronic anemia, two types of sleep apnea, I'm a partial quadriplegic, I have myositis, tourette's, seizures, and much more..
On a daily basis I forget to put on my AFOs, my knee braces which could cost me permanent damage. I forget to take my pancreatic enzymes that are required before I eat and eventually I could die if I don't it's almost been a year and a half of not complying to that medication regimen due to not being able to remember and often forgetting them at home, I haven't been using my bipap, Even though I have super scary symptoms I just forget to clean it and also with everything going on it's very overwhelming so I just put it to the side and forget. I can never stick to a diet for my health issues because I can never remember a lot of it has to do with my memory and also over whelming amounts of things I have to do.
The most I do for myself is take my daily medication in the morning and night and that's even pretty hard to remember. I forget a lot of my as needed medications, especially when I'm in pain I forget the tricks and tips. I forget to take my treatment for MCAS when I have a reaction to food. I forget to take my insulin for my diabetes at night. I also forget to do my intravenous medications through my portacath I'm supposed to get accessed once a week, And I haven't in over 5 weeks... I'm so medically burned out.. The sheer amount of disabilities I have is just too much for me to take care of, And I feel like I SHOULD be able to take care of these things as I don't work a job and I don't take care of the house those things are taken care of for me. I can't even do something as simple as wearing my glasses or changing my depends on a timely manner it's just embarrassing.
I don't know why I can't just do it, I've tried apps, alarms, calendar reminders, setting things in specific places. I can never get it right... Like Am I just lazy? I see all these other disability influencers taking care of themselves flawlessly with all sorts of disabilities and I'm over here struggling and dissociating through life. And the older I get the more disabilities have been getting diagnosed and need to be treated.
Posted Feb 25, 2026, 5:45 AM UTC