How does your family handle your autoimmune diseases & illness?

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.

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.

Hi. I also had trouble with my siblings. What is so funny is that they are in healthcare. I used to be so disappointed, angry, and frustrated with them but as time went on, I see why they don’t understand. I don’t look sick. What I find is that even some of my doctors didn’t know the systemic manifestation of this autoimmune disease. I actually had to let these doctors know what I go through with all of my symptoms. I still have not been around my siblings. I just have enough energy and mind to deal with my illness. I have emailed them ecards on holidays and birthdays but that’s all that I can do for now.
I suffer from fatigue, neuropathy, and arthritic pain. I pass out with physical and emotional stress. There’s so much more to mention but my mind and my eyes are tired now.
I hope that you can work things out better than me. I wish you well. Take care.

Hi. I also had trouble with my siblings. What is so funny is that they are in healthcare. I used to be so disappointed, angry, and frustrated with them but as time went on, I see why they don’t understand. I don’t look sick. What I find is that even some of my doctors didn’t know the systemic manifestation of this autoimmune disease. I actually had to let these doctors know what I go through with all of my symptoms. I still have not been around my siblings. I just have enough energy and mind to deal with my illness. I have emailed them ecards on holidays and birthdays but that’s all that I can do for now.
I suffer from fatigue, neuropathy, and arthritic pain. I pass out with physical and emotional stress. There’s so much more to mention but my mind and my eyes are tired now.
I hope that you can work things out better than me. I wish you well. Take care.

Hi. I also had trouble with my siblings. What is so funny is that they are in healthcare. I used to be so disappointed, angry, and frustrated with them but as time went on, I see why they don’t understand. I don’t look sick. What I find is that even some of my doctors didn’t know the systemic manifestation of this autoimmune disease. I actually had to let these doctors know what I go through with all of my symptoms. I still have not been around my siblings. I just have enough energy and mind to deal with my illness. I have emailed them ecards on holidays and birthdays but that’s all that I can do for now.
I suffer from fatigue, neuropathy, and arthritic pain. I pass out with physical and emotional stress. There’s so much more to mention but my mind and my eyes are tired now.
I hope that you can work things out better than me. I wish you well. Take care.

Hi,
I got used to people around me no understanding what I put up with, that's fine I don't care what they think or know. I know what I think of myself and that is what I focus on. Doing what I think is right for me first. Until I can give them a day in my life they will never fully understand my life. I have enough to deal with and little time or patience trying to deal with anyone else's problem.
The toughest part is never being able to satisfy my rampant hunger and always seeing the food I love and can no longer touch. During the week I live on bread and cups of tea, the bread can be subbed out for boiled eggs for change. I try to get some cooked veg in the weekends with small portions of grilled chicken or fish, I can't touch greens anymore, it is usually a very small amount. It probably amounts to the same quantity as a regular hamburger per day. What the stomach will tolerate and the amount I can eat/ drink comfortably is very restricted. Typically I eat 4 slices of wholemeal bread and 6 cups of tea per day. With that I'm on a prescription multivitamin which keeps the body ticking over. I have resigned myself to this as being "normal" in order to cope with this disease. I never used to refuse to help anyone but now days the power of NO has left me with few real friends, you no the ones that don't alway want me to do things for them. I have had to learn to adapt to my new self and change the way I do somethings. I refuse to be helped prefering to do my damndest to get the job done myself despite the obvious aftermath of pain and suffering. I have been able to fight off the assertions my problems dates back to historical events in my life and inform those who would label me as psycho this is part of Dysautonomia, it causes these problems recognise it and learn from it.
My prognosis is it will get worse, there is no cure or treatment and we have done all we can, so get lost, in a polite way. I understand this as this is the nature of the beast I grapple with.
I feel like a puppet on a string never knowing which string is going to be jerked next.
Cheers

I cancel a lot if it rains or gets too cold. In winter I don’t make many plans vs spring/summer. I think the biggest thing is we can’t plan anything…it’s a day to day operation as to how we feel and whether or not we feel up to going out. And a lot of times I end up having to cancel plans and I know ppl get upset and I can understand the disappointment but they have to be understanding to.

Hi,
I know what torn rotator cuffs are like, 13 years waiting for a resolution. Many times I was told it can't be fixed with many excuses until one bright cookie told me he could fix it. Excuses like the tendons have shrunk and we can't pull them back to fix it, BS, he did it and tied it all up with surgical polyproline, showed us the pictures, very impressive seeing this blue string holding it all together. I came too after the surgery I got up and drove home feeling no pain and with no painkillers much to their disbelief. It has taken around 18 months to get back to normal where it is no longer a problem using the shoulder unless I totally abuse it.
I always treat people they way they treat me, what they give me is what they get back in return, some times in spades just to let them know I can be just as thoughtless.
Cheers

My problem is that I have 3 full thickness tears in my rotator and that has turned to fat so no, mine couldn't be stretched. Thank you though, oh how I wish.

Most in my family don't understand how anyone could have this kind of pain. They have had acute pain and it's over. I make no excuses anymore. I just say I am not able, go ahead without me. W3ith my FM I also have osteo arthritis.