Author’s note: This post was from my original blog, The Mary Curator, and was posted August 7, 2017. It was the most popular post, and I wanted to bring it back because I plan to write a new post about my experiences with Lyme’s disease. This is a good starting point, and I wanted to have it here for people to read because it is encouraging to hear that you haven’t gone through a trial like Lyme’s disease alone. At the time I wrote this post I was having issues not only with Lyme but with a secondary infection called Bartonella and parasites that were destroying my gut (what I thought was simply “leaky gut”). I didn’t know it, but less than a year later I would be wasting away. I wrote an update about that if you want to read it.

life lymes disease invisible illness

People ask me how it happened, and I know, but I really don’t.

It was almost four years ago exactly when I began to feel the numbness in my left arm and leg. Sometime that spring a tick bit me and I contracted Lyme’s disease. I went from being a brilliant, hardworking young woman to a vegetable on a couch (seriously, I have so much “blank” memory of that time where I can remember being alive but not any of my senses).

Lyme’s disease has a fair share of controversy that involves all sorts of strong feelings on my part, so I am not going to talk about the medical end of it for now. For now I am going to give you a brief detailing of my daily life with Lyme’s disease.

What is Lyme’s Disease?

Lyme’s disease is caused by a tiny, corkscrew-shaped bacteria called borrelia burgdorferi. Its shape isn’t anything to pop champagne over, rather it allows the bacteria to penetrate and travel through tissue quickly. If that isn’t enough to scare you it will put up a special bio film around itself and hide in your body tissue to avoid anything that might kill it. The disease is hard to diagnose because the problems it causes mimics several other serious diseases.

I experience about twenty different symptoms from the disease, though I most often have extreme fatigue, memory problems, and a foggy head. Some issues have basically disappeared as my body has gotten stronger, and God has miraculously healed me of other issues (like chronic—and I mean excruciating—pain and fatigue caused by changing weather).

Everything went away last summer, but I bumped my tooth (I think) and an infected nerve caused the bacteria to flourish and now I am unable to do much… sort of. The symptoms’ intensity varies from day to day, but here is a general idea of what a typical day looks like.

life lymes disease invisible illness

Getting Up

The most difficult part of the day. A huge part of my health depends on my spinal alignment, so if I have slept in a bad position I wake up with a weakened heart and sometimes headaches. Mostly though I just need to wait for my body to wake up before I move. Too much motion too quickly can cause my head to spin or a spike in heart rate so I need to take it slow.

I will usually lay on my back to help my circulation settle (if it needs it) and pray. I read a chapter of the Bible (I have been trying to set the timer and study for half an hour—it’s hard!) and that helps to set my heart and focus right for the day. The disease will flare up if I get stressed, so remembering who is in control of everything helps my heart, soul, and mind to stay calmer and approach the day right.

Mornings & Breakfast

If I have a doctor’s appointment it is in the morning, but most days I go straight to the computer to check on blog work. Sometimes I get up a bit late and end up having more of a brunch. I am generally pretty awake and energetic in the late part of the morning.

I used to have a cage-free egg (scrambled with some spices) almost every morning, but because of leaky gut problems (also caused by Lyme) I haven’t had it in a while. I usually have a fruit smoothie. I am a big fan of apples and peanut butter.

I’m on a strict diet to reduce inflammation and avoid foods I am sensitive or allergic to, so my options are pretty limited. I will have gluten free oatmeal (warm or cold with almond milk) quite often, and sometimes my mom will make something like a blueberry quinoa bake or banana pancakes (which I both love).

I take most of my meds in the morning. Several are immune boosters, supplements to reduce inflammation, or general vitamins my body is deficient in or has trouble processing.

life lymes disease invisible illness

Afternoons & Lunch

The afternoon is pretty productive, it is usually when I do my photo shoots, though I usually slow down near 5pm. I have to watch my posture, sometimes I can’t sit up straight (because of the fatigue) which puts stress on my nerves, causing my foggy head or back/neck pain.

For lunch I have leftovers from dinner (if I am not having a brunch), or cook up some zucchini or Asian-style noodle dish. Sometimes I will just eat vegetables, like cutting up a cucumber and eating it with hummus.

I try to take a break from a project (if it is a bad day I probably have already taken a break or I break from my rest to do a little work), usually to play video games, though sometimes I will use it as an opportunity to engage on Instagram.

Evening & Dinner

My mom usually cooks dinner. I am usually pooped, though I will help once in a while. I am dairy-free, gluten-free, and sugar-free. There are several other foods that can feed the bacteria which I avoid. My dessert—if I have one—is usually an apple with peanut butter again, though I have found a few sweet things I can make once in a while that don’t give me any problems.

I try to relax in the evening. My dad might put on a television show or old movie. I generally play a video games because my brain is dead by this time (so I can’t work on a cognitive heavy project or activity), though sometimes I can play a game or put together a puzzle with my family. I crochet, but I tend develop intense aches in my wrists so I do that only when I am feeling very good.

I will also do foot baths in the evening to help my body get out the toxins from the dying bacteria.

At one point I try to turn off all my computer and Internet, and I don’t engage in any heavy reading content in the later parts of the evening so I don’t get stuck thinking (or trying to think) before bed. I will read one more chapter in the Bible before bed to help focus my mind again, spend some time praying, and then try to find a good position to go to sleep.

life lymes disease invisible illness

A New Perspective

And that is a basic overview of my day. The symptoms vary but the day generally goes along those guidelines. I don’t often get out much, partly because I am pooped in the evening, and when I do feel good no one is around or there is nothing to go out and do…which is a totally depressing way to end a blog post so I will end with this:

Despite this trial I have been grateful for what I have learned through this experience. I shared a bit of it in Friday’s post. I was a very different person before I contracted Lyme. I have grown more patient and kinder. I used to act a lot out of my strong will, and though what I was acting upon was good, I didn’t have the same level of compassion and love for others.

I share my story not because I want sympathy, but rather to share my experience. While many people have health problems, living with a chronic illness (and an invisible illness) has its challenges. We might look the same, but there are all sorts of challenges we face day to day.

So take joy in the opportunity you have, and if you have a chronic illness, stay strong. It can be difficult, but make sure to find a community of supportive people to share your story with. It is easy to feel isolated and alone, but good friends and family can help you get through it. The biggest help has been my relationship Jesus. God helps me get through every single day. I say this not to preach, but out of total honesty. I would be in a very despairing place if I didn’t have God. If you want to hear more about that side of the story, or have a personal question about Lyme’s disease contact/email me (click the about page and go to “contact”).

If any of you have any questions about any part of my experience or want to hear another post let me know!

Thank you for reading,

God bless,

Mary

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