When You Do Everything Right But You Only Get Sicker

[estimated reading time: 4 min 3 sec ]
The past several days, I’ve encountered more suffering and symptoms than is typical, including more Postural Orthostatic Tachycardia Syndrome (POTS), and losing a fairly decent chunk of time (read as: Tuesday), which hasn’t happened in a while. Today was the first respite I’ve had from this mild progression. I had a few things I was going to write about, like what it’s like during “A Day of Bartonella,” which was raging on the 28th/29th of November, and a small rant I had in my head for a couple days about.. something I can’t remember anymore, but. I can see now that’s just not going to happen. So I’m going to just let it go. Which is a small triumph in and of itself, really!

Basically, starting my herbs did not work out. I herxed, flared terribly, and got cardiac irregularity after just a couple days, so I wasn’t able to continue them during the final week of my Sporanox like my doctor had wanted me to. I’m not pleased with this, but what can you do? I am doing everything possible to beat this, and if it’s not enough, it’s not enough. I really have to stop feeling personally responsible every time my body fails me, and get rid of the idea that it’s somehow the other way around.

Anyone with chronic illness is usually surrounded by one or many people who are convinced if only the “sick person” did things their way, all would work out. You’ve spent the past decade with your illness, know it inside and out, but still, there are those who think a quick “What do you have to lose?” and “It can’t hurt to try, right?” are sufficient evidence for you to trial-run whatever happens to be circulating on Google or daytime talkshows.

The truth is, we’ve learned the hard way–either through personal experience or shared horror stories–that what you don’t know can hurt you. So it’s frustrating, to say the least, hearing someone willing to take a gamble on your delicate health just because they haven’t yet learned to deal with their own feelings of helplessness. So of course if you didn’t do it their way, if you didn’t give their ideas a shot and you got worse, it must be your fault, right? Didn’t they “tell you so”? Wrong.

My family is one that is lost to the mechanics of all these diseases I live with, and often they don’t understand all I must actually do to try and get well. I do try to explain how things work when I’m able, but I can only expend so much energy on it. Having moderate-to-severe cognitive dysfunction at any given moment means The Art of Explanation isn’t always on my ability list, and if it is, it’s usually not at a time when anyone is around to listen. So they are understandly confused when all these things that were supposed to work for me, don’t.

I tell them, I know what I’m doing… And the truth is, I do know what I’m doing. I could write a book on these illnesses by now. But I guess somewhere along the line I’ve equated “knowing what I’m doing” with “I’ll get better if I do this.” So when things aren’t getting better–like now–I feel as if somehow I’ve let down my friends and family, as well as myself…  But I’m finally starting to realize that is false. You can do everything right, and it still not work. I think that warrants repetition, even.

You can do everything right, and it still not work.

Funny thing is, I’ve known this for a long while. Nothing quite says, “It doesn’t matter what you do, I’m going to act however I feel like,” as much as having a completely unpredictable illness about which little is truly known. But I think this is the first time it’s really settled in, become integrated. I’ve gone through constant trial and error over the past nine months, in which things that should have conquered my treatment complications long ago, simply haven’t. And I think, if there’s anything to be gained from this situation, I appreciate the life lesson. I appreciate it being driven into my psyche that no matter what any doctor, family member, friend, or inner nagging voice says, if I’m doing all I can and things don’t go the way they’re “supposed to,” that’s all right, because it’s not my fault.

I can have all the knowledge in the world–and I put what I have to use every day–as well as all the tools to work with, and I still will not have complete control over how my body responds.

I can only thank God that I do know as much as I do, because without that knowledge, I’d be much worse off, and going downhill at a much quicker rate.

God, grant us the
Serenity to accept things we cannot change,
Courage to change the things we can, and the
Wisdom to know the difference
Patience for the things that take time
Appreciation for all that we have, and
Tolerance for those with different struggles
Freedom to live beyond the limitations of our past ways, the
Ability to feel your love for us and our love for each other and the
Strength to get up and try again even when we feel it is hopeless.

a rainbow at night

For a 2012 edition to this entry, see my newer post: Having determination does not always equal curing a disease.
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8 thoughts on “When You Do Everything Right But You Only Get Sicker

  1. It’s not your fault. Like you said, you are only responsible for doing what you can, and every day, you go above and beyond to fight and fight. You are not responsible for the bacteria in your body, or your body malfunctioning. You aren’t your body! For me, it’s so hard to accept as a perfectionist. But it’s absolutely true. And some people just cannot understand what it’s like. It’s never happened to them, and they don’t understand what they say can be detrimental rather than helpful. :/ I get the same response from my mom and my dad sometimes, questions about when I’ll get better or doubting my diagnosis. My dad is utterly baffled as to why I can’t give an estimate or time-line on recovery, or why the insurance company won’t pay. *hugs you* You can do this. Horray for the serenity prayer!

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  2. Omg, once again I can SO relate!!!!!! My head is killing me right about now so I’ll go rest now but THANK YOU for writing how you feel because the toughest thing is when people don’t understand these things. It’s so comforting to hear your thoughts.

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    1. I’m sorry to hear you’re having a terrible headache right now–I hope it passes, soon! Ibuprofen is a huge help during those times (as long as you take it with food of course). Thank YOU for sharing YOUR thoughts, for it is comforting to hear that others relate to it and can use the information! <3 Feel better! :)

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  3. This is one of the best blogs I’ve ever read about dealing with ME. I feel the exact same way, but it’s taken me over a decade to get here. Here I am now. :) In bed most of the time, but it’s not my fault. I do the best I can every day and that’s all we can do. I too, live by the Serenity Prayer… sometimes repeating it all day long.

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    1. So true, Henry, and I’ve definitely internalized it. To this day, whenever my illness worsens or my pain levels soar, I always, always stop to think of ways that I caused it. I’m just now starting to rephrase it from “I’m feeling worse because I did too much” to “I’m feeling worse because I did a lot,” which not only eliminates the insinuation that it was my own fault for pushing past some imaginary line (which as we all know changes minute to minute, every single day), but also reframes the focus on the fact that, hey, I did a lot! And reminding myself of how amazing it is that I was still able to do things even with having one of the most disabling diseases imaginable, helps me highlight gratitude instead of self-blame.

      Words are so powerful.

      Thank you for sharing your sentiments,

      Kit

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