When things started to get bad for me and I started to lose parts of my life to my illness I read up a lot about my symptoms. I read a lot about Lyme and POTS and Pituitary growths. I read medical records and reports. I read everything I could find online about treatments and illnesses. I read news articles about new research. And I read personal blogs.
I learned a lot from experts, researchers, and patients. I came into this fight armed with information and knowledge so I could be my own advocate. However, nothing could have prepared me for what would really happen. Nobody told me how hard it would be.
I knew I would have needles and IVs shoved into my arms and back and legs and everything. I knew I'd be peeing in a commode. I knew I wouldn't be able to shower. I knew I would be uncomfortable and sometimes in pain. I knew it was going to be a long recovery. But there were many things that no one warned me about.
No one told me I would feel guilty. I never imagined that I would be mad at myself for making my family hurt. You don't hear about sick kids feeling responsible for the stress and pain that their parents go through. But they do. We aren't oblivious to the inconveniences we cause or the worry and pain our family is feeling. And we know, rationally, that this isn't something we planned or we can control. But on some level, we feel responsible and guilty.
No one told me that I would lose some friends. Some of my best friends. People always say that things like this show you who your real friends are but nobody tells you that those who you expect to come through, sometimes don't. If someone had told me 6 months ago that I would be fighting like this for my life back, I would have given a list of people who I knew would be there for me. But I would have been wrong. And, nobody warned me that I would be surprised and hurt by who I lost.
No one told me that I would feel an insane spectrum of emotions. I expected fear. And sadness. I expected random bursts of determination and strength. But I never expected the guilt and the anger and the confusion. I never expected to feel lost or unsure of myself. I've always been a self-assured person. But when you don't feel in-sync with your own body, it's hard to feel confident or self aware. I didn't expect that.
No one told me that I would meet other people with POTS and feel absolutely no reassurance from their advice or presence. I expected support groups and open conversations about what is happening to be helpful; but they really truly aren't. I haven't found anyone else who has POTS that has affected them to the level of mine. I haven't met anyone else fighting to stay vertical the way I have to. And every time someone talks about their management of their symptoms and how they reached a point where they are asymptomatic, I feel much more discouraged. They list off all their management techniques like sodium intake, hydration, fludrocortisone, increased fluids, compression stockings, etc. Then they talk about how great these tools are and how they can now live normal lives, but I'm here doing all of these things and still unable to walk.
I never expected to feel so alienated. POTS is considered a rare dysautonomia so you don't find too many people with this condition. Even rarer, people with POTS as severe as mine. When I ask about a prognosis, my doctors come straight out a say, "I don't know." With most POTS patients they can predict a relatively promising prognosis if maintenance of fluids, activity, and medication is continued. But they admit that my case isn't typical. No one told me that I would be in one of the best hospitals in the world, and still have unanswered questions.
I learned a lot from experts, researchers, and patients. I came into this fight armed with information and knowledge so I could be my own advocate. However, nothing could have prepared me for what would really happen. Nobody told me how hard it would be.
I knew I would have needles and IVs shoved into my arms and back and legs and everything. I knew I'd be peeing in a commode. I knew I wouldn't be able to shower. I knew I would be uncomfortable and sometimes in pain. I knew it was going to be a long recovery. But there were many things that no one warned me about.
No one told me I would feel guilty. I never imagined that I would be mad at myself for making my family hurt. You don't hear about sick kids feeling responsible for the stress and pain that their parents go through. But they do. We aren't oblivious to the inconveniences we cause or the worry and pain our family is feeling. And we know, rationally, that this isn't something we planned or we can control. But on some level, we feel responsible and guilty.
No one told me that I would lose some friends. Some of my best friends. People always say that things like this show you who your real friends are but nobody tells you that those who you expect to come through, sometimes don't. If someone had told me 6 months ago that I would be fighting like this for my life back, I would have given a list of people who I knew would be there for me. But I would have been wrong. And, nobody warned me that I would be surprised and hurt by who I lost.
No one told me that I would feel an insane spectrum of emotions. I expected fear. And sadness. I expected random bursts of determination and strength. But I never expected the guilt and the anger and the confusion. I never expected to feel lost or unsure of myself. I've always been a self-assured person. But when you don't feel in-sync with your own body, it's hard to feel confident or self aware. I didn't expect that.
No one told me that I would meet other people with POTS and feel absolutely no reassurance from their advice or presence. I expected support groups and open conversations about what is happening to be helpful; but they really truly aren't. I haven't found anyone else who has POTS that has affected them to the level of mine. I haven't met anyone else fighting to stay vertical the way I have to. And every time someone talks about their management of their symptoms and how they reached a point where they are asymptomatic, I feel much more discouraged. They list off all their management techniques like sodium intake, hydration, fludrocortisone, increased fluids, compression stockings, etc. Then they talk about how great these tools are and how they can now live normal lives, but I'm here doing all of these things and still unable to walk.
I never expected to feel so alienated. POTS is considered a rare dysautonomia so you don't find too many people with this condition. Even rarer, people with POTS as severe as mine. When I ask about a prognosis, my doctors come straight out a say, "I don't know." With most POTS patients they can predict a relatively promising prognosis if maintenance of fluids, activity, and medication is continued. But they admit that my case isn't typical. No one told me that I would be in one of the best hospitals in the world, and still have unanswered questions.
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