Amen sister! Running out of gas half way through the day blows me away.

Believe me, I feel you.......
 

I hear you girlfriend! I was always a high energy person. This totally goes
against my grain. I never complain and try to keep on going like normal. I
pulled it off for awhile, but now I listen to my body. It used to bother me that
I couldn't keep up in many aspects, even everyday life things: now, I accept it.
Hubby had not been so accepting. The more I sleep, the more he gets
it.......
 

I know......
 

Hi Paula, just checking in with you. I had been feeling great lately,
except that today was a very low energy day, more so than usual. How about you?
How are you doing?  - Terri M.
 

Hello Terri - @windwalker ,
You asked how I was -- I'm quite busy, as usual . . . almost always have a lot going on. Went to Hatha/Mixed Yoga today, which was fabulous for my breathing. Then back to developing database systems and a website. I do feel fabulous these days. So glad you, too, are feeling great lately, although I hear 'ya about the low energy day! For me, low energy strikes when I lease expect it, and then I've got to really pace myself so I don't run out of gas. It's difficult, 'cause people don't understand.

I do think the sunshine and summer weather (with low humidity) makes people feel better. I'm still trying to digest all the information from the Georgetown Univ NTM conference in May. Would sure like to get a national registry going in the USA... Oregon and a few other states recently made it mandatory to report on NTM. England is way ahead of us, I believe.

I'm jumping in here, have not rsvp'd here, mostly with Katemn on another site. I had symptoms of MAC since think 2009, but wasn't diagnosed until 2011, got the old asthma diagnosis. Was treated with the big three for 5 years and have been culture free for 2 years, off meds one year.
The reason for this diatribe is your mention of a registry. In my vast reading I read about the COPD Registry it has included
MAC/?NTM patients. While in Midwest was SOO fortunate to get an appointment to with Dr. Aksamit and they enrolled me in their data base. I have another rare disorder, and they have formed a strong registry. The disorder is fibromuscular dysplasia, quite interesting (fmdsa.org). A patient, Pam Mace, is the executive director, and it has become an international organization. Have other cardiac issue so don't have the energy to pursue further information re starting a registry, but the executive director can be reached at the site if anyone has the energy.
Love to all, Linda

PS:. The point of this"diatribe" is agreeing that this should be a reportable disease as you said. I write to the CDC but doubt anyone reads my messages.
Hugs

@sherry72,
When I asked the question at the NTM conference about how do we get this to be a reportable disease in each State of the USA, I got the impression the docs seemed to think it was too difficult and not do-able. One doctor (Dr. Aksamit?) said to contact our state governor and legislatures. However, they did say that Oregon and a few other states recently got mandatory reporting. Another fabulous point was made at the beginning of the conference that NTM & bronchiectasis has gotten the attention of the ??? I don't recall if it is the CDC or NIH, so I hesitated to mention up. But the doctors at the conference seemed quite excited about this, since it may mean more research being put into NTM.

Hi Paula, so glad you started yoga. It is very beneficial. You are right,
many people don't understand the major fatigue we experience. It does hit
unexpectedly and makes it hard to plan things. I had a new friend that I had to
cancel out on several times, she gave up on me and thinks I am a flake. Oh
well......