There are these thoughts and innate feelings. I have as a person with a CHD (congenital heart defect). I am learning that a lot of other CHD'ers as we are called or now Adult CHD'ers feel the same way. I have primarily heard this from woman. Nevertheless, the men too often wonder when the other shoe will drop. I for one go about my life as fully as I can.
However, when the lights go out, that is when the worry starts to happen, and I can almost predict, how and when the other shoe will drop. I have predicted it accurately a few times, which is what makes this last bout so difficult. I knew something was wrong with my heart and my body, but did not know what. I spent months in fear, and trying to go about my life was difficult, to say the least.
(That however is for another post).
It is the fact that all CHD patients have this ability to know when the good is good. When the bad will get worse, and when the good is temporary. Part of that comes from our physicians, but a large part comes from within.
Lately, I cannot get the fear out of my head that things are only good temporarily. This is not the fear that comes when the lights go off, but it is more constant. I know many adult patients with the same issues I am having and we are the only ones who understand each other and bond instantly! Therefore, while there are patients with similar issues, we do not all necessarily have all the same defects, and it is both comforting and scary. You wonder when your situation will be like someone else's whether it is better or worse.
Nevertheless, we ACHD'ers bond instantly and no one understand us better than we do. There is definate comfort in munbers which I've come to realize since I started this post a few days back. Both the instant connection and the strenght we all have has helped to ease my fears quite a bit. The point is, no one gets it like you do, unless they've been in similar situations with similar conditions. Just as our own heart and spirit heals itself so does the connection to a new person who gets you instantly.
For whatever reason you have, Stay Strong and Keep Fighting. <3
However, when the lights go out, that is when the worry starts to happen, and I can almost predict, how and when the other shoe will drop. I have predicted it accurately a few times, which is what makes this last bout so difficult. I knew something was wrong with my heart and my body, but did not know what. I spent months in fear, and trying to go about my life was difficult, to say the least.
(That however is for another post).
It is the fact that all CHD patients have this ability to know when the good is good. When the bad will get worse, and when the good is temporary. Part of that comes from our physicians, but a large part comes from within.
Lately, I cannot get the fear out of my head that things are only good temporarily. This is not the fear that comes when the lights go off, but it is more constant. I know many adult patients with the same issues I am having and we are the only ones who understand each other and bond instantly! Therefore, while there are patients with similar issues, we do not all necessarily have all the same defects, and it is both comforting and scary. You wonder when your situation will be like someone else's whether it is better or worse.
Nevertheless, we ACHD'ers bond instantly and no one understand us better than we do. There is definate comfort in munbers which I've come to realize since I started this post a few days back. Both the instant connection and the strenght we all have has helped to ease my fears quite a bit. The point is, no one gets it like you do, unless they've been in similar situations with similar conditions. Just as our own heart and spirit heals itself so does the connection to a new person who gets you instantly.
For whatever reason you have, Stay Strong and Keep Fighting. <3
Ellen, your candor and spirit are inspiring. No one wants to have health issues-- sharing your story is a powerful way to find personal healing. Keep going! Hugs, Chris M.
ReplyDeleteAlways wishing you good health! Keep that positive attitude and know you are thought of and prayed for!
ReplyDeleteAlison Cox Greenspon xo
Ellen,
ReplyDeleteYou are an inspiration. I am honored to have met you as a friend. We have a CHD bond that not many can understand. We share laughs, stress, and inspiration to each other...for this I am grateful. You are my "heart friend" who I will always love and be there to support. You are so amazing!
You too Stephanie xo
ReplyDelete