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Measuring Progress

MAC & Bronchiectasis | Last Active: Aug 27, 2020 | Replies (33)

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@sueinmn

Interesting, I just had this discussion this morning with my pain PT! I use how much I am able to do on any given day to measure my progress - sometimes I am limited by the lungs, other times by pain. When lungs are the limit, I try my rescue inhaler, and maybe a second saline neb, before I give in to a quiet day. With pain, I try extra stretching, maybe some essential oils, and just go slower, but try not to just quit.

Today will be a limited day, because the spinal adjustments during therapy "kick my butt" - so I'll concentrate on quieter pursuits, icing & stretching, and hopefully a decent walk later. Of course, my proposed to-do list for today originally included extensive weeding, and some digging of wayward plants in the garden - that will have to wait a day. Instead I will do some proposal-writing that I have been putting off, and maybe a little cooking or baking - not my usual summer activities at all.

When I first was diagnosed with MAC, and on antibiotics, I could manage 2 hours a day of activity, in 20 minute intervals interspersed with rest. Now I can go for several hours, with up to 2 hours at a stretch of really active/strenuous things like gardening, biking or chasing with my grandkids. A short rest rejuvenates me on good days. But I still "hit the wall" right around 4 pm - have tried sleeping later, resting, a snack, extra water, caffeine...but I'm pretty much done with anything requiring strength or brainpower at that point. My kids say "well...you're not so young any more"... but that can't be - any suggestions?

Sue

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Replies to "Interesting, I just had this discussion this morning with my pain PT! I use how much..."

Wonderful tips Sue, thank you !! You sure are an A+ positive lady!!! Blessings to you!! You are a mentor to follow for sure!!!

Sue, You might try adding light resistance training to your regimen. I use resistance bands called "bodylastics". Not expensive, portable and can get from Amazon. I have a regimen that targets upper and lower body on alternating days, takes me 10-15 minutes/day. I find I have more energy for the things I love to do, Tennis, Golf, Hiking etc. And as a bonus can't hurt in the fight against my lung issues. Bill

I so understand what you're describing. There are times throughout the day, like you said, where I hit a wall. Sometimes I just give in and sit in a comfortable chair and rest. Others, I just keep going which I think isn't the wisest thing to do. Every night I tell myself I'm going to bed earlier, but, never do. Be kind to yourself !

Sue, your words, “ 2 hours a day of activity, in 20 minute intervals interspersed with rest. Now I can go for several hours, with up to 2 hours at a stretch of really active/strenuous things.” These words are inspiring testimony to the payoff of commitment , your commitment, to consistent self care.

Poodledoc, Sue, and others: thanks for giving us your personal examples that life can get better. Your Weight/resistance training, your going slowly from 20 minutes of doing to now two hours of biking, etc has encouraged me so much. One of you reported oxygenation increase to 97%. It never occurred to me that I could change that. After a neck injury in June, I had PT , all upper body weights and bands. I could only do 10 minutes walking. But much as I’ve hated it, I’ve continued all, 5-6 days a week (no new Mac) and now I can do 17 minutes walking and my oxygenation has gone from 90 to 94. You all inspire me. Thanks so much!