My family knows, and a few get the seriousness of it. A few. Most don't. Some pretend to, but they just don't understand. I get that. I am honestly ok with it. It is what it is. That is all. This is my problem, no one elses.
Of course, my hubby really understands. He has been to Drs with me, and we have been best friends for 40+ years. He has seen my struggles and now that we know the problem he totally gets it. He is my confidant, he is my pillar of strength, he listens when I get so damned frustrated I just want to throw a temper tantrum and he encourages me on those 'damn it' days. He drops me off at the door of stores because my fatigue is so bad I can't walk 20 feet without feeling like I will pass out. He forces me to have down days because we both deal with the consequences when I don't have them. He hugs me. A lot. He is my strength and he is my forever love. I wish he didn't have to deal with what I have. But he does and he does it so well - and better than I do.
Our daughter, who lives 2.5 miles from me immediately warns me to stay away when anyone has a sniffle that she thinks might be contagious. She gets it. I love her for that and for so much more.
My son gets it. When I get down I can call him, whine on his shoulder and he always finds a way to make me laugh. I love him for that and so much more.
I have one friend that honestly gets it. We avoid heavy crowds, we shop on low attendance days, we avoid crowds and we sew in my sewing room - a lot. We sew here because she has a very small home and says the (farm) break here is nice.
Other people? They know I have an immune problem, but that is about as far as it goes. Some know I can't be around sick people. Some warn me if they are sick, but they don't really understand it goes further than that. They invite me to pizza buffets, salad buffets, Chinese buffets - most of my friends love buffets. They bring me sweets they bought at bake sales. They invite me to firehouse pancake sales. They bring me nachos from the concession stand. They offer to share a drink with me. They offer to let me taste their food with my fork after they ate from their plate - "Taste this - it is great!". They offer to share their bowl of queso, salsa, candy bar, bottle of water... you get the idea. Things normal people would actually take for granted and not think a thing about. I *have* to think about it.
And then there are the people who confuse AUTO immune with Immune... don't worry, I was one of those. They are mastly different.
People mean well; I know they do... I have been offered every immune building miracle pill, potion, juice, and vitamin known to man - and I have taken a lot of them. Well meaning people give me advice on how to build my immune system, but when I shut down, they make remarks insinuating I don't want to try - I want to bask in the illness and get sympathy. Ummm, nooo... I have even been told "cancer is much worse - be happy that is all you have." Oookayyy...
The Drs finally convinced me that my immune system is not broken - it is flat out missing. I have no foundation. Nothing to build on. I can't build an immune system from nothing - it is like building a brick wall with no bricks. Most people can make theirs stronger - but I have none to make stronger. It. Is. Gone. There is only one miracle cure: God.
One Dr explained it to me like a football team on the field ready to play, but the quarter back and the coaches walked away. There is no one to tell the players what to do... and so they don't.
I have had Drs give me nil pils and bandaids with 'medicine' in them (ha!) to apply once a day. I have been called a hypochondriac; by family, by friends, by lots of Drs (one I trusted for 30 years in south Louisiana) and by people I don't even know. People in general don't understand that our immune systems work 24/7. An immune system is always busy fighting germs, invaders, viruses, cuts, blisters, hang nails, sunburns, bruises, mouth ulcers... always at work. Since I lack an immune system, I am always sick. ALWAYS sick. It is what level of sick I am. Do I feel like going out today or am I going to stick at home and tough it out? That is a daily decision we make. My friend gets it if I call and say, "today is not a good day." Hubby sees it in my face. We roll with what we get.
When I need to change antibiotics (notice I said change, because I am always on antibiotic) (that's the only thing I have fighting my infections) my sinus infection (constant: 4+ years documented) gets worse. If I got a thorn in my thumb working in the garden, my body reacts by *not fighting the infection*... Yep, I have to get another antibiotic - or ADD one. I am sick every single day. It is just a matter of how sick. I wouldn't know what to do if I had a really good day and I haven't in YEARS. We make the best of what I have. My family gets that. Most of my friends and acquaintances cannot comprehend this is a day to day basis. All of my immune deficient friends have the same exact problem. This entire story (mine) could have been written by any one of them - not just me. We have all been through the same battles (Drs, friends, family, hypochodria, mircale cures) and we still fight them.
I am strong and I am determined, but ICL is tough. Some Drs have stated they don't understand why I am still alive. I know it is because God is not finished with me and He gives me the strength to fight this day and and day out.
And He has sent me a handful of people to light the way - and oh, my gosh, am I thankful for them!
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