Does anyone get “paranoid” (for lack of a better word)being in social situations? I know me…I think…even though this lupus diagnosis is still rather fresh, I know how easily I get sick…and like others, it’s always 10 times worse than “normal” people. I’ve been in a couple of social situations lately (the latest, my husbands high school reunion) all these people are hugging and kissing and “slobbering” all over me (some, literally!) A couple were SO close, they were “in my space” (even if I weren’t sick-inches from my face, it was too close!
The thing is…I’m feeling good right now…the first time in years. And I’m so afraid, especially with the cold season just around the corner. I feel like I should be wearing a flashing button that says, “LUPUS…please don’t touch.” What’s a person to do? I know I can’t avoid everything…I have to go to the grocery store (and if someone coughs or sneezes, I go the other way.) But how about these other things that I may feel either obligated to go to or just social stuff in general. I just don’t want a repeat of getting sick. 6 days to someone else is 6 mos. of sickness for me…for just a common cold and cough.
I go to stores in the morning and keep my distance. My social life I keep quit small. I am on guard for coughing people. I will move away if someone is caughing. I honestly stay away from young kids. I get too sick. I live my life and make the best choices that are available to me. There are many things I don’t do this is probably why.
I feel like if you avoid social situations and interactions with others, I feel like in the end you might not be as happy and you feel more isolated. I have lupus and in addition to always being surrounded by others, there are days when I feel like I don't want to be touched at all, but it's not with the idea that I will get sick from touching them, its just that I don't want to be touched. But take proper precautions... I know Lupus is different for everyone, especially considering medications and such, but I am actually also a CNA, and surrounded by residents and coworkers all the time, but I don't get sick with other illnesses or colds too often. I do pick and choose obvious situations, like if I know a resident is on isolation or something, I won't take care of him or her. so clearly there are avoidable situations.
But take vitamins, drink orange juice, eat well, rest well, wash your hands constantly or use sanitizer, try the flu shot; anything to try and build your immune system.
this is just my opinion, but hope you figure things out
I am usually only out for church occasional shopping and with my friends and mom. My church and friends know that if they are sick they are asked to keep distance and say hi from a safe distance. I am truly thankful for people that know and are kind enough to stay away. We did have to ask the church but every one was so kind about it. My mom who is also my caregiver was really sick for about 4 days and it was so hard because she couldn't really help me ad she had to stay away. The first time I got sick with Lupus I was in the hospital. I really hope not to have to repeat that. I am nervous as for the past year and a half I have kind of been just in my apartment. I would get out here and there but not often. But I am now going back to school and I am terrified of all the germs and buggies I am going to be facing! I guess I will be carrying a bottle of hand sanitizer!!!
I try not to think about the what if's, commonsense should dictate stay away from people that are coughing and sneezing, using hand sanitizer and washing your hands is your best defense. There's no easy solution for social situations, just be aware of the people around you unfortunately for us the common cold can become a big deal I just try to be watchful of my surroundings and avoid being in close tight places and large crowds.
I do not go around some if they are ill period. I have to be like this because I had my spleen remove a couple of month ago due to another disease I have called ITP. So that being said I basically have nothing to fight off a sickness or infection. I wash my hands a lot and run the other way if some one is coughing or sneezing.
It seems like my grandchildren are the one who bring germs to me, so I have asked their parents to please not bring them around when they are ill. If they have the sniffles,, it is usually nothing to them but it means several days of illness to me. Like the others, during flu and cold season I try to avoid social situations and eating out. I didn't one time and spent several days in the hospital because I couldn't stop vomiting and then I had the "dry heaves". It took four days to get this under control, and when I finally came home I was very, very weak. This took a little over a month to get under control.
My kids bring various illnesses home to me but I’ve been able to combat this by washing my hands frequently, asking them to wash theirs, using purell, and using clorox wipes on light switches and door handles etc… I’ve also trained myself to not touch my face in social situations. When I was on cytoxan I wore a mask whenever I would go out. Another thing that really helps is nasal irrigation. Rinsing out your sinuses twice a day keeps germs from sticking in there also. Doing all of this helped keep my colds to a minimum last winter. I hope this helps.
Ha! Ha! i think , excuse me! i know that am crazy or trying to be funny , BUT am laughing with you !!!! Yes !social event's come's at a later moment don't worry about if you can't do it -seriously ,i rather be in the bed away from the noise and all thing's that you mentioned , to have PEACE and quite!!! The nerve of LUPUS is something else !!!!!! Really the truth is just that , and trying to MAKE yourself do thing's that you really don't have the joy to do , DON"T FORCE , LUPUS will hit you very HARD and make you want to jump out your own BODY !!!! (just a saying , it relate's to having a FLARE !!!). Be mindful of your health cause no one can/will live for you ....Beverly L.
Thanks for all the suggestions. I usually pick and choose things to attend. I don’t feel obligated. Its a different world today, and people are just so much more “kissy-huggy.” I feel like I need something attached to my chest that pops up and says “stop” as people go to reach for me!!