Sunday, July 27, 2014

Living with Lyme

My friend NeeCee shared this article with me today:

Those are just two examples of people who have been dealing with lyme disease. I've been somewhat vague on how it's affecting me because, for the most part, everybody's story is different and I don't feel like my story is any more special than anyone else's. I also don't want pity. Well-wishes are one thing, but I have no desire to live my life with messages of "Oh, I'm so sorry about (*whispers*) your disease." I've never wanted attention for being sick.

My family is no stranger to chronic illness or terminal disease. My sister has heart issues and type II diabetes. My mother had colon cancer and it took her life. My aunt fought and beat breast cancer. My brother has severe asthma and allergies that dictate his days. My dad had a total of six heart attacks before cancer finally took him at the age of 65. We aren't unfamiliar with sickness. But somehow, this disease caught me off guard. 

With our family history, I suspected at some point I'd get cancer. Or that I'd have to deal with insulin doses. I'd mentally prepared myself for those possibilities/probabilities. But nobody prepared me for Lyme disease. Hell, I didn't even know what the signs were until others pointed it out to me and suggested I get tested. It was the furthest thing from my mind when I started developing symptoms. But there it was on paper: Lyme disease; not acute.

It took me by surprise, but at the same time, with all the research I'd done while waiting for my test results, I think I would've been more surprised if it hadn't come back positive. I had almost every sign. The only one I didn't remember having was that bulls-eye rash. Everything else was there, and while it may sound odd, I was hoping it would come back positive. Not because I wanted to have it, of course - who the hell would want to be this sick? - but because it would finally give a name to all the shit I'd been dealing with the last several years. 

Like most people with multiple nondescript symptoms, I just wanted an explanation. I was so sick of giving excuses that seemed like bullshit even to myself and I was the one who knew what I was going through. I blamed my brain fog on the anesthesia from my hysterectomy in 2012. My pain was, of course, from sleeping wrong and not seeing my chiropractor as often as he'd suggested. The Bells' Palsy and skin rashes were an allergic reaction to something, I'd said. My deepening depression, growing anxiety and increasingly common mood swings had to be because of stress. Sleeplessness, exhaustion and weird sleep patterns could be blamed on my anxiety and depression. I mean, literally everything could be explained away by something else. But there was only one single thing that would encompass them all and it would finally have a name.

Until my diagnosis, I sucked it up and dealt with life as it came at me. After all, if it didn't have a name, how could I not just deal with shit? I had no excuse, no reason, no explanation. Hell, if I'd known I had Lyme disease two years ago, I could've saved myself thousands of dollars in therapy where I tried to figure out why I felt so fucked up all the time. I still tend to think I'm stronger than I am, more motivated than I feel, more capable than not, and as a result, I get pissed at myself because I end up overdoing things.

Anger is a very real part of this whole thing. I don't, however, know if it's a symptom of the disease or a side effect of the diagnosis. I spent a month on oral antibiotics which made me extremely physically sick a few times. Then I spent a month on IV medication through a PICC line that totally hosed my birthday month all to hell. Anger at my circumstances was a natural reaction to what I was going through, I'm told, but I still feel guilty about it. I've never been real tolerant of bullshit, but since being diagnosed, I've noticed it has only gotten worse. I hope now that I'm done with medication and I'm on the way through my post-treatment phase that it will lessen. I try to take each day as it comes, but I notice that I have to force myself to have good days sometimes. It doesn't come as easily as it once did. That pisses me off, too. Sometimes it feels like a never-ending cycle in that respect. 

Mostly, I just miss who I used to be. I was fun-loving, carefree, spontaneous and happy. Now, I have to remind myself to be some of those things, and I am slowly coming to terms with the fact that I will probably never be some of them, too. Spontaneity is rarer for me because I have to stock-pile my energy. Happy is a choice, I'm learning, but I do try to find happy in every day - whether it be something grand or something minute. I still love having fun, but carefree is something I'll never be again.

That part sucks.

This will always be on my mind. Even if I get to the point of being symptom-free, it will always be in the back of my mind like a stranger lurking in a dark alley. My health was something I used to take for granted, but the bottom line is that I will always be sick. There's no remission from chronic lyme disease, no survival rates, no pink ribbon campaigns and universal sisterhoods like there are with cancer. Thousands of people have it, but nobody talks about it. That's hard. Most days I feel very alone in this. Those are the days when I stay in bed and lose myself in a book or Netflix binge. Other days, I pretend I don't hurt just so I can feel normal...even if it's bullshit. 


Because I know what people think. Hell, if half the medical community doesn't recognize chronic lyme disease as a real thing, what hope do I have with friends and family who don't have the answers? People who don't know anything about Lyme don't understand that I hurt almost all the time. Or that going to the grocery store or making dinner for my family can put me in bed for a day and a half. Or that traveling can take me out for a week straight. They don't understand that extra stimulation such as a crying baby or a fight between family members makes me want to beat my head against a wall. They think me being asleep at 3 in the afternoon is laziness, or that being awake at 3am is insomnia. They don't understand how painful it is for me to sit at a ball game without moving for two hours. And that even just listening to them vent about work or their kids makes me want to cry because the burden is too great for me to carry. 

I feel like I should be spending my day apologizing to people around me because I'm sick. They have to hear me scream when I'm angry and cry when I get frustrated. They pick up the slack when I don't have the energy to both make dinner and clean up afterward. They work hard because I can't. Most days I feel like a complete burden. I'm working through that guilt, but it's not gone yet. Mostly, though, I just miss me.

I have hope that even if my physical abilities don't return to what they were that my mental capacities do. I'm smart. I'm funny. I'm ridiculously talented with words. But I'm also forgetful, crabby and tired a lot. I'm optimistic and I try and keep my hopes up, but at the same time, I have to be realistic because I don't want to set up false expectations for myself. I'm still working on the balance there.

But in the meantime, I'm just taking things day by day, breath by breath.

That's the Lyme life.

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