The Thing About PNH

The thing about PNH is that somedays you just feel like thisYour whole body hurts and you have no energy to do anything but curl up and sleepThe trick is to admit you are sick and that you are having a sick day. To allow yourself to make like a vegetable and become one with your bed/couch.Unfortunately, this is one aspect of being a “healthy sick” person that I am not very good at. I get down on myself for being lazy and forget that my body is not what it should be. Not being able to “see” my sickness can make it really hard for me to admit that it is really a part of me and that it does affect me in ways that I can’t necessarily see. Typically this inability to accept my reality ends with J putting me on a timeout in the bedroom with a fuzzy blanket and closed curtains. But I’m working on it and trying hard to remember to be thankful for the good days and accepting of the bad ones. I try to get as much done on the good days as possible so that I don’t feel as guilty when I’m not up for much on the bad days. It is a constant battle for me and somedays I do better than others. Today, I can admit that I feel like thisHopefully tomorrow I will feel more like this

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