Motivation waning

Here's my words of motivation. I stopped worrying about it and just live and do what I want to do. I spent 3 solid years taking those big 3 rotten pills and the last full year of those 3 years I had inhaled Arikayce added. So that was 4 high powered antibiotics and boy did I get tired of all that business. The first time in 3 years I got an all clear reading on the Mac I was done. Done done done! Never even wanted to know ever again if I had it or not. I built a woodshed this summer. I used a chainsaw to cut down trees and saw up doug fir into rounds. I hauled it all to the woodshed. I stacked 7 entire cords of wood. That's enough for 3 years of heat at my cabin. I put in a garden. I cleared tons of rocks out of the field. I fixed my car myself. I went hiking. I could go on and on. I'm working hard at the age of 71 and I don't even want to know if there's mac in my lungs. I just want to live and not be constantly psyched out about what thing is going to eventually kill me. I deny it's existence. I give it no power over me. My health is not perfect. I'm slow. I get out of breath. Some days I can work hard. Some days I can't walk across the room. It would have been good if you could have continued the treatment until you got a negative reading that's for sure. I'm sorry about that for you. I had some side effects too. The most serious were ear aches and there was concern I'd permanently lose my hearing. I did lose my voice for an entire year! The 3rd year of continuous treatment when I was taking the arikayce along with the others I could not speak. It was too painful to use my voice. That was a bummer. But I was determined to see it through and push it to the limit in order to finally get a negative result. Because I had fear. But after 3 years I figured I had done enough. No news is good news . . that's why I never went back. Never had another check up. I don't know if this is motivational for you or not. sorry if it's not.

Fear grabs us and keeps us from relaxing. Instead of doing a lot of treatments I watch or listen to people talk about mind over matter. About positive visualization. I also move a lot. I do things every day that give my body a full range of motion. I bend. I twist. I lift heavy objects. I look for every excuse to get down onto the floor or the ground and get back up again. Moving , working, that's what keeps the airways open. That's how they will drain. I have bronchectasis. I can tell when there is a blockage . . a build up that needs to drain. I've learned to relax my throat. and then it drains. It's like magic. Being tense causes the blockage.

@hbarbh
Good for you. Now that's called living life on your terms! I admire your strength {not just muscle strength 🙂 and spirit } It's a choice we all make everyday in our own way.

That is a long time to be dealing with all this so I’m sure it’s hard to keep it up after all this time as the MAC hasn’t cleared. Are you producing anything during your clearance sessions? If not maybe your Dr will ok you going down to once a day. I am only about a year in on this journey but will usually listen to a podcast or music during my sessions which helps or do the mini crossword or other games to help pass the time. I also have my daily cookie dough yasso bar after the evening percussion vest session so I know I have a treat to look forward to when I’m done. Wishing you the best and hoping you get some good suggestions to help out.

I guess it depends on how your lungs are. Do you cough and need to clear your lungs or is there very little sputum? If little sputum, ask your doctor if x1 a day is adequate. Do something nice--listen to music or a podcast, look outside, or watch television during airway clearance. Whether or not you have a productive cough (I do not) filling up the lungs is great for circulation and boosts your blood flow to the lungs.

I think all of us go thru mental slumps and wonder if it's worth it. It's common for patients with chronic illnesses to have ups and downs and some find help seeing a counselor who works with the chronically ill or taking antidepressants.

The fact that you've done it all for six years shows you have a lot of grit. Most patients aren't that compliant (retired nurse). I've only done this 2 1/2 years, but my allergies, sinus and lungs have improved a LOT so I try to focus on that.
Like the other posters, I use the time to catch up on emails, social media, etc. I also watch comedy clips to brighten my mood.

One thing I realized this summer is that some (not all) stories about people who have overcome adversity are a big motivator for me. While my respiratory/allergy issues are the best they've been in over 20 years, a non-life threatening but miserable and tiring autoimmune condition popped up again over winter and I just wanted to sit on my sofa. One day, while I was sitting, I ran across a FB post about Mary Kitlowski, a young bronchiectasis patient with 34 percent lung capacity who did the NYC marathon (26.2 miles) in 2019 wearing her portable oxygen concentrator. Her husband carried the batteries. Unbelievable grit. I used to be a runner and just couldn't imagine how she did that. I thought here I am with good lung capacity sitting on the sofa because I'm tired! It got me out there again- walking, but out.

I hope you find what you need to get thru the slump. Do remember to give yourself credit for doing it six years. Doing it that long shows you have the perseverance to keep it up.

I feel your pain, and I'm pretty certain everyone here has faced the same anxiety and frustration. And we all deal with it in different ways. You will find yours. Remember that knowledge is power. It's ok to question your doctors . Give yourself lots of grace. Prayer helps, at least for me it does. Do what feels right for you. The suggestion of doing something during the treatments that makes you happy and relaxed is on point.
Unfortunately, I can't speak to the time spent nebulizing and cleaning equipment since I stopped doing it years ago.
Are you continuing to have symptoms associated with MAC? Night sweats, fever, chills, fatigue? If not, have you discussed colonization vs infection? If you still have an active infection after being treated for years has the idea of seeing an immunologist come up? Maybe there's an underlying reason your aren't converting.
Keep up the good fight. Things really do get better.