How does your family handle your autoimmune diseases & illness?

Posted by sallysworld73 @sallysworld73, Feb 24 2:28pm

I find it’s so hard to communicate with my family exactly how I’m feeling. And it’s so frustrating at times. I’ve been sick many years now. I’ve had more bad times than good the past 10 years especially, so they’re just so use to it. I’ve nearly come to death’s door literal 3x in 4 years between the years of 2019 & 2023. And that not the first time I’ve been there. So some just expect I’ll make it back every time, some have my damn funeral planned 😂.

But what frustrates me is I have 7 autoimmune disorders & take 23 prescriptions which have to be taken several times daily some of them. Most of them cause drowsiness. Being autoimmune it’s is just exhausting. But my family knows this. And they SAY they understand I’m tired because of all my medication, because of my diseases, then in the next breathe call me lazy because I don’t want to go shopping. No I don’t want to go walk around Salvation Army to see if they have a bunch of shit i don’t want thanks. No Walmart can wait…the thought of all those ppl and germs…ugh in either of those places. I think of the ppl & the germs. I think of covid. I’ve had it 3x now…it’s not fun. I avoid going out unless it’s more intimate like lunch with a friend.

Anyways no one understands what you’re going through unless they’re going through it. And I tell them because my mom says oh I’ve been with you for 10 years I know what it’s like….i say you may see what it’s like but you don’t know what it’s like because you can’t feel it.

How does your family cope? How fo you cope with your family?

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cheyne | @cheyne | 4 days ago

Hi,
Not so brave when all that can be done medically has been exhausted and your left with the shrug of the shoulders and told it will get worse, in the nicest possible way. There is little point in wasting resources when there is no gain to be had. I have a supply of opioid based painkillers and strong antibiotics for when I feel the need. I don't wish to become addicted so will endure the pain and discomfort while I can. There is no care or comfort that can help. It is down to me to find my own way of dealing with the inevitable.
I'm in it alone and know it, recognise it and own it, now I deal with it as best I can looking forward to every little break in symptoms I can grasp. The nature of my beast is that some symptoms are permanent while other tend to come and go as they please, daily, while yet other symptoms love to surprise me with their sudden intervention.
At least life is not boring!
Cheers

josmio | @josmio | 3 days ago

Hi. I’m on Methotrexate for the inflammation and pain. It worked well for me. It’s not an opioid. The only time I had antibiotics is for UTI.
I was told the first time I had been with my rheumatologist is that the treatments are to slow down the progression of the disease and that there’s no cure. That’s why I volunteer for the research studies so these doctors gain more information and knowledge to hopefully one day find a cure or at least provide better care and treatments for my symptoms. It’s such a complicated disease and it needs to be studied more The system they have for me now doesn’t address all my needs. I actually have to be my own advocate to try and get complete care that I need and deserve. I did not get the teaching and all the information to make the best choices for my healthcare. I had to go online and search for most of what I know and understand about this disease. And today, I’m still trying to get all that care. I understand the frustrations and anger but I feel that I will benefit in working with these doctors to make a better system.

cheyne | @cheyne | 3 days ago

Hi,
I'm way past frustration and anger, left them behind months ago. I'm at piece with my situation now. With multiple health issues that seem to conflict with each other including dietry requirments there are few options available to me, medicate unsuccesfully or suck it up. Pain is my constant companion, we get on well, I ignor it and it tries to remind me of it's presence. Looking back on my medical history indicates my situation may well have been happening for over 27 years when the first test was conducted. No pain in the arms and hands. It is difficult to pin point when all this started as you are not aware of the problem when you know no different. Just explains why I get so many injuries to my limbs without knowing I have done it, or how. My wife constantly is pointing out I have another injury that I'm oblivious to. I currently sporting over 15 injuries to my legs with no knowledge of when but an idea of how it might have happened. I ground away half of one of my fingers years ago, no pain, unaware I had a problem until a work mate asked why my hand was covered in blood. The surgey told me to shut up when he was operating on the finger, I kept telling him the nerve endings he missed as I watched. I have a sensation of feel but don't know what it might be without looking, neithers to say I don't look that often which probably accounts for the injuries I get.
Cheers

josmio | @josmio | 3 days ago

In reply to @josmio "Hi. I’m so familiar with some of your restrictions and limits. I cannot eat a full..." + (show)

@josmio

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.

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Thank you.

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