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This Is Real Life with Lyme

It’s days like these.

Days that hurt.

Days that burn.

Days that usher in more fatigue and more tiredness and more depression and more tears where I just don’t know how long I can keep this up.

Keep this up.

This thing I do day in and day out. This putting on a brave face for the world, for my kids, for my husband, so no one else has to feel the disease the way I do. That, this, is what I don’t know how much longer I can do. This acting like my migraine isn’t killing my head, or this fatigue isn’t weighing me down, or this brain function isn’t a struggle … The world doesn’t know how hard this is because, 1. they’ve never experienced it 2. they aren’t truly experiencing it through me because I don’t share the realness of this evil disease. And there’s so many reasons why I don’t. Maybe one day I’ll go into all of that, too.

This place here, this space where I can write whatever I need to write, is the only space I feel safe and comfortable enough to talk about everything I’m dealing with and that’s because I know hardly anyone reads it. I can purge my thoughts without much pressure of who it might affect because I know my family isn’t reading it, my kids aren’t reading it, my husband isn’t reading it. They won’t be burdened by the disease that has attacked my body. And frankly, I don’t know how good of a listener I would be if roles were reversed. I don’t blame anyone for their apathy and disinterest in me and my sons health, or lack their of, as the case may be.

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If you are reading it. I hope that this serves as a warning about ticks. I hope this serves as a warning that if you’ve been bitten by a tick, and got the bulls eye, or came down with flu-like symptoms, you are infected, unless you have some kind of super human immune system that can somehow kill something so wicked that the rest of us don’t have, you’re infected. It might not be manifesting in your body yet, but it’s there. You need to get treatment when symptoms do come forward.

If you’ve never been bitten but you live where there are ticks, which is just about everywhere, please know from a friend, that they are potentially dangerous, and if you are bitten, and start showing symptoms of being ill, run – run fast, to a Lyme literate doctor. Not just your hometown medical doctor. They will likely tell you it’s not Lyme because they don’t know shit about Lyme disease. You need to see someone who specializes in the disease.

I don’t want you to suffer like my son and I suffer. We suffer every single day. We’ve suffered every single day for almost six years, with no real light at the end of the tunnel. After thousands upon thousands of dollars spent on health care, we’re still sick. Dash still rages, still cries a lot, is still in therapy, and is still fatigued. I am still fatigued, depressed, tired, struggle for an easy breath, suffer with migraines, weak muscles, hormonal imbalances, and have to fight for brain function. If we did nothing to fight this disease, we’d be far worse off. The money has been well spent. But the fact is, we’re more and more looking like the woman with the issue of blood in the Bible. She spent lots of money, saw many doctors, and wasn’t better. It took Jesus’ robe, and her faith, to receive her healing. I am beginning to think that is the only way we’re going to find our cure.

I don’t know. I just know today is rough. And life is hard. Life is good. but life is hard.

This is real life living with Lyme.

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