Lyme Disease: Updates and the idea of staying sick for good.

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My doctor and I had a conversation the other day about my Lyme disease, and how I need to be prepared to be on some type of treatment for the rest of my life, even if it was something small, like a pill a day. He said that he’s pretty positive that he can get me to the point that I feel healthy again, but told me that Lyme bacteria often comes back, and consistently fighting it is probably the only way I can continue without a terrible relapse that takes me back to where I started.

Hearing something like that, even when you knew it was possible, kind of makes you step back. It makes you quiver for a second and thing, “oh, I’m never getting rid of this.” It makes you realize that your life will never go back to what it was before you got sick.

It’s disheartening to say the least, and it’s really easy to focus on that rather than to focus on the other part, the part where he said that he can get me to the point I feel healthy again even if I am on a small amount of treatment. It makes you overlook the word small in front of treatment. When I took a moment I realized that and when I did I tried to readjust my attitude. I’ve talked about my current relationship with Lyme before, about how I’ve made peace now that I’m well enough to live my life, but still am desperately wishing I could finish the process.

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How to stay accountable: charting goals and health

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This past two years have been really crazy for me. I’m still getting treated for Lyme Disease, I got engaged, now I’m planning a wedding, and buying a house. A lot is happening, and when you add that onto the ever present task of bettering yourself, it’s easy to let things fall through the cracks. So I’ve been working on methods to stay on top of everything and I’m going to share the few things that have worked best for me.

Charting is something a lot of doctors suggest people with mental health problems do to track their moods and anxieties. I’ve had to do it for that in the past, luckily my mental health is pretty stable at the moment, but that doesn’t mean that charting hasn’t still been useful for my health overall. I’ve been using it to track progress with my lyme disease, as well as track what causes me to feel bad. For example, I’ve started creating a little list of things I’ve eaten that day in the corner of my planner, that way I can still see if gluten or sugar is effecting me like it used to (and I’m proud to say it’s not! It’s gotten a lot better).

I also have been using my planner to write down everything I’ve done that day, and I mean almost everything. I’m not just writing down appointments or lunch dates, I’m writing down whether or not I’ve walked the dog, what hobbies I did that day, whether or not I ate out for lunch. Having your day written down like that helps you track a lot of different things. It helps me track my energy levels in response to my lyme treatment, but it also helps me stay accountable for diving back into my hobbies.

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What is the key to beating depression before it really takes root?

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I was able to successfully ward off depression my freshman year of college, but I wasn’t able to do so my senior year. What was so different and why didn’t I catch on in time to fix it?

It’s a question that crossed my mind today when I thought about how long it had been since I mindless danced like crazy around the room. I did it a ton my freshman year of college because I knew it made me happy and I needed it, along with a lot of other things, but since then? It’s been a hot minute since the last time I cranked music just to dance by myself. That led me to ponder on the fact that I didn’t do it my senior year of college, which was the year that my depression actually caught me. I work so hard to keep it away my freshman year, why didn’t I attempt to do the same three years later?

It’s a multi-layered question, but I think it can help me understand how to catch my depression in earlier stages in the future. Sometimes pulling out all your coping mechanisms is enough, sometimes you need medication, but the fact is it’s always easier to fix it when you catch it early.

My freshman year was hit with really bad break ups, both a romantic one and one with my best friend. I knew I had every reason to be sad. I acknowledged that sadness and I knew that it was logical. My senior year was different, it shouldn’t have been, but it was. My close college friends all graduated a class before me and I became isolated the same way I had my freshman year, but I still had friends in the area so I dismissed the sadness. It wasn’t valid and I was fine. I kept telling myself that, and it’s amazing what lying to yourself can do. You can convince yourself that crying every night is completely normal, and I did. Was it because my pain was more understandable my freshman year? Was it because I knew college sometimes started out rocky and that break ups were always messy? My senior year I thought I was supposed to be clinging onto my last years of college bliss, but instead I found myself angry I wasn’t done yet. Everyone around me was sad to be leaving, did that make me feel like my emotions were less valid?

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Stop Googling your new medications.

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I’ve heard a surprising number of people tell me they are really worried about their medications side effects, so they read them all before deciding whether or not to go on them. I get the idea, it’s important to be informed, but it can be a dangerous habit to get into. Let me explain:

I understand the dangers of bad side effects, one medication we tried for my bipolar disorder made me suicidal, another one that is perfectly safe for 99.99% of adults caused an abnormal cluster of cells in my brain after I had been on it for a number of years (they went away when I went off the medication). So, I get it, medications can do some terrible things to your body, but a lot of us need medicine, whether for our mental health or for our physical health. That medicine is essential to keeping you alive or living a life worth living. It’s scary to look at all the terrible things that could happen, but it’s also scary to think of all the things that would happen without it.

The thing is side effects aren’t always the norm. Everyone has medications effect them differently. I know people who are on the pill that made me suicidal and it was the one that cured their depression. It’s really a toss up whether or not you’ll have a good or bad reaction, but one thing is for sure, you’ll never know till you try.

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Giving and Taking Health Suggestions: No, you don’t actually know the fix.

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Suggestions normally come from a good place. We want people to feel better, we think we know a way to help, so we share. But lets be real here, every mental or physical illness can not be healed by the latest fad diet or the new “it” supplement and offering them as a cure all can honestly be very rude and condescending.

Of course I’ve tried to heal from Lyme Disease, of course I’m still working on it actively. I’m not better yet, I’m not just going to give in and submit to it. I’ve found that there are some things that seriously work, but they normally aren’t the things suggested to me by everyday people. They are things my doctor suggested or things that other people with this disease had work for them. They aren’t things that your best friend sells (hello oils) or diets that your mother in law did for her energy (hello keto).

Having an endless line of suggestions that probably won’t do anything aren’t helpful, they’re just saying ‘you clearly aren’t trying everything to get better.” That’s normally not what people mean when they suggest them, but that is normally how it comes off. It also comes off as people thinking they know a lot more than your doctors about science and yourself about your body. Neither of these is true.

That’s not to say that all suggestions are rubbish, some of them might help. How does one pick which ones to try and which ones not to?

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Gluttony, the often dismissed deadly sin

rose-elena-503170-unsplashI had to “give up” sugar and gluten because of Lyme Disease. I put give up in quotation marks because I’ve been known the occasionally cheat on this diet, but over all, I’ve stuck to it pretty well, way better than I ever thought I would.

It was ridiculously hard to change my diet so dramatically. Gluten and sugar are two of my favorite food groups, one or both seem to be in everything I love to eat. It was a serious adjustment, even more so because I, like most first world citizens, was addicted to sugar. Missing the foods is one thing, seriously craving them as I went through withdraws was another.

But the withdraw symptoms only lasted two weeks and when I got to the other side I found that turning sweets down was easier. It was then when I started getting the same comments over and over again. People were always eager to tell me how they could never give up gluten or sugar. They couldn’t do it. It was too hard. There wasn’t enough reasons to do so. They wouldn’t even want to try.

Well, who would?

But all these comments lead me to start thinking about gluttony in different terms. It made me realize how many people have dismissed it. Myself included.

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What my chronic illness can teach those who are healthy:

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I backslide in my treatment over the last few months.

Not a ton, mind you, but any backslide is still a regression and it wasn’t one I was happy about. But there was still a lot to be thankful for. I still feel way better than I did when I started treatment over two years ago. One more antibiotic is annoying and it makes my stomach hurt, but it’s still less than I was on. I’m still able to work and go about my daily life, and that’s a big deal, because two years ago I could hardly move from my bed to the couch. Plus, now that I’m taking it, I’m starting to steadily make back the ground that I had lost.

But there’s an important thing to point out. The antibiotics are important but, I only feel like they’re working when I’m taking care of myself. It’s a tricky thing, but finding health with Lyme is a fine balance of taking care of yourself and taking your pills. I find that the pills allowed me the ability care for myself by helping reduce my pain and my fatigue, but without the diet, the exercise, and natural treatments, I might as well still be sick.

It brings me back to all the lessons on health I had learned before Lyme Disease.

We push aside daily wellness when we’re healthy enough. When we don’t have a chronic illness, when we don’t have a disease, or a disorder. Our bodies are functioning and that’s enough for us, we don’t feel like we need to do all the extra work for them to be at their best, because good enough is good enough.

It has a lot to do with our own laziness, our own gluttony, and all the pleasure we find in things that aren’t very healthy to us. It really dawned on me after a few weeks of giving this lifestyle my all so I could get better. I thought “when will I be better enough to stop all of this?”

That’s right, I wanted to know when will I would be better enough to stop being healthy.

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