How does your family handle your autoimmune diseases & illness?

My family expects me to keep going. I am allergic to over 50 medications so I can’t take anything. I am now taking IVIG but the doctor is just now experimenting with it.
I have autoimmune severe axonal sensorimotor peripheral polyneuropathy. Dysautonomia. Small fiber neuropathy, Cardiac autonomic neuropathy (it moves into your organs because you have nerves there) so my blood pressure goes up or down my heart rate is either bradycardia ( too slow)or tachycardia (too fast) this causes me to pass out, gastroparsis, seizures, Sjogrens and Lupus. It’s frustrating you just do not plan in advance. I have learned when I feel good I get out and about when I don’t feel good I don’t do anything.
I don’t feel my hands so I am constantly cutting myself and due to the motor neuropathy I-have tremors so my husband cuts up my food and sometimes has to feed me and I have a cup with a lid that I don’t spill water on me. Yes, it’s frustrating because one thing that frustrates me is when people tell me they know how I feel but they have nothing wrong with them. Oh yeah then you have lower back problems
My legs are starting to drag,I have dizziness and nausea

Hi,
Seeing it and living it are two vastly different takes of a disease. No one else can feel what you feel, them merely think they do. I usually just gloss over my health now as I'm tired of explaining the details to people who don't really get the extent of such diseases, not a lot of Dr's appreciate what it involves or is like to live with either. When your whole world is turned upside down and you can't do a damn thing about it, life can suck. On a bad day I just want to be left alone and not bothered by anything or anyone, on a good day, I seem to remember they weren't half bad!
I'm lucky that my disease, Autonomic polyneuropathy is incurable and untreatable so I don't have a lot of medication to take. All my nerves are compromised and play havoc with me by the hour, meantime I'm working on destroying all the small blood vessels in the brain, as a distraction while the PN creeps up my legs.
I have been to the pearly white gates and been turned back and that is not all bad as I didn't end up stoking the fires of hell either!
I just don't bother with family that don't want to fit me in. I'm stuck with my circumstances and can't change them much, so if they can't accommodate me, tough for them they miss out on my electrifying personality.
No not really, likely they don't notice my absence and haven't given me another thought. That's fine I'm too busy grappling with my life to think about it. My first priority is my health everything else can wait until I'm good and ready, if ever.
I have never stopped wearing a mask from the beginning of Covid and will continue to do so as I can't afford Covid with my compromised immune system, virtually a death sentence for me besides the one I already have to contend with and it doesn't help with Dysautonomia either. I try to avoid risk as much as I can.
Cheers

I was officially diagnosed with temporal arthertis last week but started having issues and been on high disease Prednisone since November. I printed out info on GCA so my family and friends can understand what I am going through.

Hi,
I'm on the same path as you, but not as advanced. For me my entire digestive system is compromised from throat to the other end. Like you I savour the better days and try to cram in as much as possible while I can. On bad days I sit and watch endless movies, mostly through the eyelids while I wait it out. Touch wood my heart has evaded the effects of Dysautonomia although it has tried to get me a few times. I get moments of temporary paralysis which affect the lower body and can leave me standing frozen and unable to move or tempt a muscle to move, fortunately they are short lived and pass. My motor skills are deteriorating which I find difficult to handle having been a watch, clock and instrument maker most of my life. Recently I woke unable to speak or think of how to speak, it tool a few moments but it passed. I have diabetic neuropathy creeping up my legs and in my hands, I can not tell you what I'm standing on or handling without looking. I only get internal tremors so far and do not get nausea but I'm cursed with vertigo and tinitus constantly. I try not to let my health issues get to me by working every moment I can, hard, unwilling to surrender to this devastaing disease.
I understand and feel the frustration myself dealing with my Dysautonomia.
Cheers

Yes!!! Nothing wrong with them at all and it just pusses you off!! 🤬🤬🤬!! I’m sorry you’re going through all that. I have tremors to. And neuropathy in my feet & hands. I drop a lot of things & i can’t cut fresh vegetables & stuff because they’re to hard but i can still cut my food as of now. But I do throw my fork across the table occasionally 😂.

Best of luck!

That sounds like it’s extremely tough. Hugs to you.

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.

I’m sorry your siblings aren’t supportive at all. My sister is a lil better than my mom I will say that but still clueless.

i get much the same as you do from my family. Knowing I have a torn right rotator cuff that cannot be fixed for 15 years now, my daughter asked me to rub a pain rub on her shoulder after she worked out too hard. She did not offer to do that for me, I have to do it for myself, nor did she ask how much it hurt for me to do that for her. Because I've had fibromyalgia for 45 years now but we have to keep moving on family just thinks we exagerate our pain when we do say something or like you when I don't want to go out in the rrain and cold.