← Return to New Diagnosis of MAC/MAI & I'm scared

Discussion

New Diagnosis of MAC/MAI & I'm scared

MAC & Bronchiectasis | Last Active: Oct 13, 2022 | Replies (349)

Comment receiving replies
@flib

@ Terri. I have family in town this weekend and I had to tell them I am too ill to visit. I know they are taking it personally. It's just one of those unpredictable times when I'm coughing a lot, have no energy and not getting enough sleep. They say they don't mind the coughing just want to see me. Which means I have to get a shower, dress, and try to make conversation between coughs. Who wants to sit in a room and cough at people. Other than being very thin, I don't look sick. I am running out of ways to explain this illness. Flib

Jump to this post


Replies to "@ Terri. I have family in town this weekend and I had to tell them I..."

@aflib...Tell them that every exacerbation damages your bronchii and talking and entertaining causes constant coughing to do more damage. One of my doctors forbids me to talk for 3 days when the cough gets bad. If all else fail, tell them they could catch something from you. It is not lying-you could have something communicable at any time with MAC..

@flib I can totally relate to what you are saying. As if it isn't bad enough to have mac and cough a lot; the fatigue steals your life. I cannot tell you how many times I have turned down invites because I just didn't have the energy to pull myself together. As for talking.... After I went on disability, I was contacted and asked of I wanted to work from home as a call center person. I had to decline on the basis that after talking for a bit; it would result in me going into a coughing jag. I don't get around to seeing all of my family when I visit my home state because all of the running around wears me out. I have explained my disease, but because I don't look ill; I know they think I don't care enough about them to make the effort. We just have to take care of ourselves. Our fatigue is so fickle at times, you may wake up feeling decent and want a short visit after all. I think you had mentioned getting some ginsing, you may opt to take some to get you through the visit.

@flib So how did the family in town thing go? I hope you were able to squeeze some time in for them.