How does your family handle your autoimmune diseases & illness?

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’m glad to see that the family is still supporting you. I have to say that the healthcare system needs to change for patients like us. We need that pt and family education from them. It has to start by accepting that this disease is an inflammatory systemic disease. Hopefully then we can get the care that each one of us deserve and need. Thank you for sharing. Take care.

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

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.

Yes but you will find as years go on the patronizing of we understand your pain, when they’re sitting there telling you about their ski trip next, or how they went roller blading… and your barely able to get up & down from the chair & you’re the youngest sibling by many years. When your 76 year old mother runs circles around you on a daily basis and says i understand you don’t feel well, i understand your 30 something pills a day make you sick & tired. And in the next breath say oh you’re lazy you never want to go out shopping. No…no I don’t. I’m tired, I feel shit on a good day, I don’t like to be around a lot of ppl anymore…to many germs.

@elainemel You have the correct approach with communicating with family and friends with printing out info so that "family and friends can understand what I am going through."

I am battling psoriatic arhtritis and I have described my related symptoms in Word, both major and minor. I have over a dozen. I print it out and hand it to them to read and than have a discussion on what I am going through. This is a sample of what I wrote for a couple symptoms:

FATIGUE and STIFFNESS: Stress of any form (physical, mental, emotional) can bring on fatigue and cause stiffness in the back and legs. It has been difficult to walk in a large store, like Costco. Mental/emotional stress will cause fatigue/stiffness the next day.

JOINT PAIN: Various joints have sharp pain that usually come for a short period of time and go away. If the pain remains, icing calms it. The pain is usually in a wrist, an ankle/tendon, knee and may be on either side.

Hello, as someone with pretty bad inflammatory arthritis and Lupus, plus all the things that come with it. It was so hard adjusting to life with my partner after my symptoms got worse. I felt like he saw me as just lazy or dramatic and it took a while until he fully realized and accepted our new life. Some days I can’t walk, can’t hold a spoon, memory and cognitive abilities shot. Despite all those fights just trying to understand each other, now there’s understanding and patience for each other. You just have to explain, give examples, prove your love for life, for your family and give them a chance to take out their misunderstandings on you. I promise you with eventually gain the respect you deserve for efforts, just give what you can and if they still don’t understand then you did your best, but you know what you can and can’t do, not them.

Hi,
I think with early diagnosis all that could be accomplished is to slow the progress. Sadly there is no cure and as yet no treatment and we can't undo the trigger that started this disease. Most Dr's play with your symptoms thinking they are going to treat the untreatable. It maybe foolish of me to take this disease head on without medication or help, but that is what I do. I challenge myself to do better each day working through or around the symptoms, I try to ignoring the ones I have no chance of affecting. Working hard is my treatment, it affords me the luxury of diverting my attention away from my problems. This is my new reality and I just work through the day as if this is normal. Strangley enough I have never wondered why me.
Cheers

Wow! You’re brave in choosing that path. I’m glad that things work out for you. I do have great healthcare providers and I trust their judgment and expertise. They are very caring and supportive. I figured that this disease is so complicated that I will need help. Yes, there’s no cure but at least I would have that comfort and care. Take care.