Hi. I’m so familiar with some of your restrictions and limits. I cannot eat a full meal. I just get full right away. I lost most of my sense of taste so I never can get satisfied with any of the food I eat and I get all these cravings. I was such a foodie before I got sick and trying new restaurants and new food from other countries. When I cook, I over season. I just really want to be able to taste something.
My dietitian keeps trying to get me to take vitamins. I refused those and just eat as healthily as I can. I figured that I can’t taste the food anyways so might as well eat for the nutrients. It’s crazy, I know but I just can’t give up on myself. I don’t have support from my family. I get support from people I meet when I go for my doctors’ appointments. Everyone knows me by my first name. That’s how often I have these appointments! I get my hugs from the clerks at the lobby or admitting clerks then from my doctors and nurses. I talk to everyone even housekeeping and guards. It’s really where I socialize these days since I get easily fatigued which keeps me in bed all day and just watching tv.
I learned to say no, placing limits and borders because of my condition. I don’t have much energy so I would rather use what I have for myself. My family had the hardest time with that and see me as being difficult but I’d rather keep my sanity and whatever health and life I have left.
I also have that autonomic neuropathy. Yes, that placed so much limits on me as well. I still have to undergo tests and another specialist because I’m getting worse. I just feel that I’m dealing with the damages of my disease because I’m not diagnosed early.
No, people will not understand and just empathize. Not all healthcare providers know about what I have so I cannot expect anyone else to understand. I will just be there for someone who is suffering like me. I understand.