After a lifetime of being sick, and after a year of being so acutely sick I could no longer function, I finally know what went wrong. A few days after my last post, I made what I thought was going to be one final effort to find any information on my health condition before I gave in and decided that I would always be sick and that there was nothing more I could do to help myself. I had reached the end of my rope. I think it’s best to keep private what reaching the end of my rope looked like, but suffice it to say that it was really, really sad. It was then, when I gave up, that the answer finally came.
What I have is compensated idiopathic diastolic cardiomyopathy which lead to condition called myalgic encephalomyelitis. It’s a mouthful, but basically, it means that I have diastolic heart failure, and my body has compensated for it by turning down its production of energy to help me survive said heart failure. In future posts I will describe what’s happening a little more thoroughly, although not completely. It’s not that I don’t think you will understand, it’s just that it took me a year to do all the research required and I only barely understand what happened myself. Also, my condition is only mostly understood – there’s still research to be done in the medical field.
This is a good news/bad news diagnosis. The bad news is, there is no cure. Diastolic heart dysfunction has only recently been detected and understood, so not only do many cardiologists not know about the condition, but there is no research yet on treatment. The good news is, my symptoms can be managed, and perhaps I can get to the point where I barely notice the symptoms. I may have to lead a limited life, but not so limited as I do now. As I start treating the condition, I should make slow improvement. The catch is, it can take a year or more to know if what I am doing is changing my disease status.
I am very tired now, and I need to get some rest so I can start taking the next steps toward my recovery. I promise that soon I will write a series of posts describing what the disease is in a more thorough manner, how I got to the diagnosis, and what the future will look like.
It feels good to finally have the answer!