Measuring Progress

Posted by thumperguy @thumperguy, Aug 19 10:40pm

I use time between acute flare-ups requiring antibiotics to resolve as a handy “gross” measure. However I’m aware that many people active on this forum are copping with greater pathology than my “mild” case and likely have more sophisticated ways to assess status

Hi thumperguy!! I missed what you use to measure your progress when you’re between flareups ——-did you did you mean what you cough up with the saline and nebulizer or what did you mean interesting I just wanted to know I love to learn as much as I can about this illness since I have it myself and maybe others can learn also thank you!! Have a great day!! Judy H

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Hi I see what you meant now!!!

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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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I understand now!!!!

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

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@judyhodgern

Hi thumperguy!! I missed what you use to measure your progress when you’re between flareups ——-did you did you mean what you cough up with the saline and nebulizer or what did you mean interesting I just wanted to know I love to learn as much as I can about this illness since I have it myself and maybe others can learn also thank you!! Have a great day!! Judy H

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Got it!!!!

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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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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

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Absolutely!!! Thx!

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@poodledoc

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

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@poodledoc – Thanks – I am working on that now – have to go slow due to extensive arthritis and recent thumb surgery, and I am not a "go slow" person by nature. Each day seems a little better, and I am happy to be back on my bicycle after a long hiatus.
Sue

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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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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 !

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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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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.

Liked by migizii

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@thumperguy

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.

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@migizii, although having multiple chronic issues occasionally sets me back to the beginning of Sue’s testimony….which I am gradually doing again after my mid foot fusion surgery this summer.

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Geez Migzii, I can only guess what a hobbling ordeal you’ve been through. Fill me (us) in. How have you coped? Don

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Sue, I’m impressed with how positive and helpful you are in spite of dealing with pain issues and challenges of living with mac. To repeat thumperguy’s post, you are inspiring.

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Thanks for the encouragement everyone. I don't feel inspiring – just stubborn. The women in my family occupy their bodies for an average of about 90 years, so I have to keep after mine so I can be an active occupant.
Sue

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