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Hi, all,
Well, as I have said in a couple of other posts, we seem to be back online finally, so I will give a quick update.
Objectively, I think I am doing fairly well. On Saturday we threw an Easter egg hunt for the children of our teacher's class. We had about 45-50 people (approximately half kids and half adults since virtually all families have only one child). It was lovely weather and we hid about 160 eggs, some real but most plastic. On Sunday we went to the Great Wall for a sunrise service (left home at 4:15am) - the first ever there as far as anyone knows! It was spectacular to watch the sun rise between two peaks. They went to a place where it only requires a climb of about one flight of steps, so I was able to make it to the top. Also with 5-600 people climbing at the same time, it was very slow so that helped. Then we came back home at 8:50 and left again at 9 with some students to go to the Chinese church. Afterwards we came back and had an Easter Sunday dinner complete with tiny sandwich hams (all we can find here).
So, am I paying for this? Well, I can definitely tell that I have fluid in my lungs again (trouble when I lie down and "the cough"), but not too bad, I think. I will try to double up the meds when I can rest, but that does not seem to be likely to happen in the next few days. I certainly had some sob on both Sat and Sun as well as some chest pain. The intense back pain that I have learned to connect with a developing gradient is there most days when I push, but all in all, I still think I am doing fairly well.
Perhaps I can best describe where I am by saying that I have improved enough that I am getting impatient with having to think about HCM every day. What I mean is that a year or two ago, I would have loved to have only had to think about pain and sob. The constant danger of passing out is gone thanks to meds and pacing. I can now walk at an almost normal rate of speed (about half as fast as I used to walk) compared with last year when anything more than a creep would start intense back and chest pain. So, I feel like I just want to forget HCM.
But, the other side of it is that I still cannot walk and talk at the same time without gasping between each word. So, on Friday I was walking with a student and she said very firmly, "We need to slow down for your heart." I was shocked because we were having such a great conversation that I had not realized how much I was gasping for breath. So, I guess what I am trying to say is that this disease impinges on my life daily. I face a flight of stairs and realize I can barely make it or I have to stop along the way. I decide that the weather is good and I can take a nice walk and I speed up and discover that it is a bad idea. Etc. etc. etc.
I have not been able to read anywhere near all the hundreds of posts that people have posted since we lost our connectivity in February, but I know that many people with serious problems have posted. To all of you, I want to apologize for sounding like I am complaining. In fact, I am deeply grateful to be doing so well, just ready to feel better yet.
Does anyone else feel this way?
Rhoda
Well, as I have said in a couple of other posts, we seem to be back online finally, so I will give a quick update.
Objectively, I think I am doing fairly well. On Saturday we threw an Easter egg hunt for the children of our teacher's class. We had about 45-50 people (approximately half kids and half adults since virtually all families have only one child). It was lovely weather and we hid about 160 eggs, some real but most plastic. On Sunday we went to the Great Wall for a sunrise service (left home at 4:15am) - the first ever there as far as anyone knows! It was spectacular to watch the sun rise between two peaks. They went to a place where it only requires a climb of about one flight of steps, so I was able to make it to the top. Also with 5-600 people climbing at the same time, it was very slow so that helped. Then we came back home at 8:50 and left again at 9 with some students to go to the Chinese church. Afterwards we came back and had an Easter Sunday dinner complete with tiny sandwich hams (all we can find here).
So, am I paying for this? Well, I can definitely tell that I have fluid in my lungs again (trouble when I lie down and "the cough"), but not too bad, I think. I will try to double up the meds when I can rest, but that does not seem to be likely to happen in the next few days. I certainly had some sob on both Sat and Sun as well as some chest pain. The intense back pain that I have learned to connect with a developing gradient is there most days when I push, but all in all, I still think I am doing fairly well.
Perhaps I can best describe where I am by saying that I have improved enough that I am getting impatient with having to think about HCM every day. What I mean is that a year or two ago, I would have loved to have only had to think about pain and sob. The constant danger of passing out is gone thanks to meds and pacing. I can now walk at an almost normal rate of speed (about half as fast as I used to walk) compared with last year when anything more than a creep would start intense back and chest pain. So, I feel like I just want to forget HCM.
But, the other side of it is that I still cannot walk and talk at the same time without gasping between each word. So, on Friday I was walking with a student and she said very firmly, "We need to slow down for your heart." I was shocked because we were having such a great conversation that I had not realized how much I was gasping for breath. So, I guess what I am trying to say is that this disease impinges on my life daily. I face a flight of stairs and realize I can barely make it or I have to stop along the way. I decide that the weather is good and I can take a nice walk and I speed up and discover that it is a bad idea. Etc. etc. etc.
I have not been able to read anywhere near all the hundreds of posts that people have posted since we lost our connectivity in February, but I know that many people with serious problems have posted. To all of you, I want to apologize for sounding like I am complaining. In fact, I am deeply grateful to be doing so well, just ready to feel better yet.
Does anyone else feel this way?
Rhoda
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