I've tried so many versions of journals over the past years of being sick but forget to write in them so often that they've not been as helpful as I could wish. Or, when I do remember, I haven't been able to go back and sort thru the myriad details and make sense of them. I've been using the FibroMapp App recently which is a great app but even that hasn't helped me correlate things as much as I could wish. Clearly my own lack more than the app's I suspect.
@NK17- as another Dr. Kogelnik patient, I was in a similar situation. I kept waiting for him to get the test set up in his office but finally decided that wasn't likely to happen any time soon. Personally I really wanted the test because 1) I needed to see on paper that what I had been experiencing in my body for the past several years was really happening. It is so foreign to everything I have ever learned about physical conditioning and rehab that I knew I wasn't going to be able to even attempt to convince myself to use pacing and stop trying to exercise my way out of my illness unless I had concrete evidence in hand. 2) Since I was diagnosed with POTS before ME/CFS, I needed that proof to show my POTS docs who were pushing me so hard to do an hour of aerobic exercise everyday. 3) I wanted the confirmation on paper to help prove the ME/CFS diagnosis was accurate and 4) I wanted the proof to help with my disability claim when it came up for review.
For all those reasons, I was really glad that I did the 2 day CPET test with Staci. On the negative side, it was expensive (although my private insurance paid part of it which helped) and it did set off a major crash. Whereas I walked thru the airport to go out for the test, I required a w/c to get home and was pretty much in bed for a couple weeks afterwards.
Between the fitbit and the HR monitor, I have learned a lot about what I can and shouldn't do. But like SDSue, I'm really good at muffling that voice which is telling me I probably should stop now. Prior to the fitbit and HR monitor there was absolutely NO voice there at all telling me to stop, so that is some progress at least.
@NK17- as another Dr. Kogelnik patient, I was in a similar situation. I kept waiting for him to get the test set up in his office but finally decided that wasn't likely to happen any time soon. Personally I really wanted the test because 1) I needed to see on paper that what I had been experiencing in my body for the past several years was really happening. It is so foreign to everything I have ever learned about physical conditioning and rehab that I knew I wasn't going to be able to even attempt to convince myself to use pacing and stop trying to exercise my way out of my illness unless I had concrete evidence in hand. 2) Since I was diagnosed with POTS before ME/CFS, I needed that proof to show my POTS docs who were pushing me so hard to do an hour of aerobic exercise everyday. 3) I wanted the confirmation on paper to help prove the ME/CFS diagnosis was accurate and 4) I wanted the proof to help with my disability claim when it came up for review.
For all those reasons, I was really glad that I did the 2 day CPET test with Staci. On the negative side, it was expensive (although my private insurance paid part of it which helped) and it did set off a major crash. Whereas I walked thru the airport to go out for the test, I required a w/c to get home and was pretty much in bed for a couple weeks afterwards.
Between the fitbit and the HR monitor, I have learned a lot about what I can and shouldn't do. But like SDSue, I'm really good at muffling that voice which is telling me I probably should stop now. Prior to the fitbit and HR monitor there was absolutely NO voice there at all telling me to stop, so that is some progress at least.