It’s 10 AM, and I Have Spaghetti Squash in the Oven.

Pre-lyme, this never would have happened. Post-lyme, it’s the norm.

Chronic Lyme Disease affects people in many different ways. In my case, it shredded my digestive tract. 

My life’s mission for the last 5 years has been to heal my digestive tract. I have literally tried everything: pharmaceuticals, supplements, various diets, powders, potions, massage, meditation, colonics (don’t recommend), doctors all over the country. 

Of all these, diet therapy is critical. However, as you might guess, eating with shredded intestines is not a lot of fun. Imagine then, the irony that diet therapy is a crucial part of my recovery plan. That’s right, my digestive tract is in shreds, and I am healing it by eating.

Through much trial and error, I have learned my fragile intestines do best when I eat fresh, organic. “clean” food made in my own kitchen. Which means my kitchen in always crankin’. I make nearly 100% of what I eat from scratch, and that takes a lot of planning. Sometimes (like today), I need to prepare elements of the meal earlier in the day if I won’t have time in the afternoon. 

After trying numerous diets, I landed on the Paleo Diet, as it’s easiest for me to digest. Happily, it’s also the diet recommended by my doctor for combating Chronic Lyme Disease.  A win-win for me and my poor digestive tract.

A quickie on the Paleo Diet.

IN:

Vegetables, well sourced animal protein (grass fed beef, wild fish, free range poultry), nuts, seeds, healthy fats, some fruit.

OUT:

Gluten, dairy, sugar, processed foods, artificial ingredients, legumes, grains.

Once I got over the shock of what I would not be eating, I started to focus on what I would be eating, and it started to feel manageable. In many ways, the paleo diet is a blessing in my life. It’s fairly easy to follow, it’s family friendly (my family eats paleo dinner every night, and I’m not sure they really know), and it’s relatively easy to maintain when eating out – most restaurants have animal protein and vegetables.

Yes, I’ve given up a lot of foods. But I don’t feel deprived. In fact, I feel grateful. This diet is helping me heal, and the the possibility of regaining my ability to digest normally is much more important to me than anything I’m not putting in my mouth.

I’m Drained.

In a lymphatic way, that is.

Let me explain.

Per an earlier post, my body is seriously bad at detoxing. That means the every day toxins that typically roll in and out of a healthy person’s body tend to stay in mine. A body doesn’t like that.

As a result, my body is host to many unwelcome guests, including: black mold, heavy metals, yeast and bacteria. Sexy, right?

The fact I have chronic lyme disease aggravates my detox issues, and the detox issues make it difficult for me to kick lyme disease. Bad cycle.

So, the toxins need to go. And since they are not leaving on their own, I need to help them.

My doctor recommended I add lymphatic drainage to my detox regimen. Lymphatic Drainage consists of a very light massage around the lymph areas in the neck, under arm and abdominal areas. It was quite relaxing.

Then about an hour later, I knew it worked because I started having a detox reaction, which for me includes nausea, tiredness behind my eyes and a feeling of heaviness throughout my whole body. Basically, I felt like crap, which is actually a good thing in my world. Feeling like crap = toxins leaving.

Here’s where it gets more interesting. My doctor says when I feel detox reactions it’s because my liver is presented with more toxins than it can effectively deal with, so I need to help it out by turning my skin into a second liver. Two ways this can happen are a green clay bath, or a far infrared sauna.

After my massage I went for the bath option because I felt too crummy to drag myself to the sauna. After the bath I applied rosemary essential oil (good for detoxifying) over my abdomen, liver area and the bottoms of my feet (fastest way oils are absorbed).

After all that, I felt infinitely better and was able to resume my day as if nothing happened.

It can get a little frustrating and disruptive to take a toxin-time out in the middle of the day, especially since a toxin storm can strike at any time. But my doctor says it’s critical to take corrective measures at these times because any toxins that are not handled by my liver will be reabsorbed into my body. Not what we’re looking for.

So, the storm has passed, and I’m back in the game.

Until the next storm.

It’s not a matter of if, but when. I will be ready, and I will greet it with gratitude, because it’s a sign my unwanted guests are leaving.

Sometimes God Answers Prayers Really Fast.

Yesterday was a bad day. My brain was fatigued, my body was fatigued, my stomach hurt, and I had no appetite. 

This is nothing new to me. I have good days and bad days, and I’ve come to take each in stride. Neither is going to last, so I try not to get too invested in how I feel on any particular day.

I used to get very excited about a good day, thinking I was turning a corner, only to be crushed when the next bad day came along. Inversely, I used to wake up on a bad day thinking I would never again have a good one.

Vicious cycle.

Through meditation I’ve come to understand that everything is always changing. As such, I try to be present with whatever is happening now. Whether it’s a good or bad day, it’s the day I’m having and has no bearing on tomorrow. I am not clairvoyant so I will have to deal with tomorrow when it comes. And not a minute before.

This is much easer said than done, particularly when you’ve been trying to stay level headed about good and bad days for over 5 years. Some days, it’s very difficult to remain level headed, and yesterday was one of them. My bad day was overwhelming. It broke me in a way. 

On these occasions I am usually able to find a way to see light, even if it’s just a speck. But yesterday it was only dark. I hung my head and asked God to show me some light. Please, any sign that something might change for me. I wasn’t asking to be cured, I was just looking for the tiniest reason for optimism. A thread.

Before I could even finish my prayer, the following notion shot right through me: “I am on the journey I am supposed to be on.” It brought me a comfort I can’t adequately explain. I had been holding my breath all day, and I was finally able to exhale.

It’s not my job to understand where this journey is going. Rather, it’s my job to stand in it one day at a time. To be mindful of what I’m supposed to learn, how I’m supposed to grow, and figure out how to use my experience to help others.

This is happening to me for a reason. The reasons reveal themselves to me in ways both big and small, but when I have dark days like yesterday I need to remind myself that God’s not done teaching me yet.

I am a willing student. I’m listening.

My Demeanor Matches the Sky Today.

Grey. Heavy. Leaden.

I’m not depressed. That’s not the problem. Rather, my mental and physical energy are so low that I just can’t get going. Here is my to-do list:

7:30 AM Drive daughter to school.

1:30 PM Haircut

3:10 PM Pick daughter up from school.

5:15 PM drive daughter to her dad’s.

Doesn’t seem too taxing, right? Today, to me, it feels impossible. I am presently in the period between the school drop off and the haircut, and I am wondering how I will find the energy to deal with the rest of the day. I literally don’t know how I will do it.

PL (pre Lyme) I was a very active, type-A person. It was my nature to be on the go, all the time. That’s just how I rolled.

Now, the simple act of daily living is exhausting to me. I am coming to believe this stems from both mental and physical fatigue. My brain just isn’t right in ways it’s hard for me to explain.

For example, my brain feels like it just isn’t processing information the way it should. It’s just not crackin’ along with me in the way it used to. It’s a step behind. It’s tired. It craves silence. Nothing but silence. Anything else is too exhausting. Too overwhelming.

I’ve been here before. Many, many times. And I’m always surprised by my ability to rally. In this moment, my stomach hurts, my brain hurts and I’m tired. But somehow, some way, I will do everything I am supposed to. 

I will mindfully put one foot in front of the other at a pace that works for me, and I will reach the end of another day.

And as always at the end of the day, I will go to sleep hoping the next day will be better.

One day it will.

Lyme Disease is Really Glamorous.

Don’t I look lovely? Here I am at the infrared sauna this morning. Sorry for the poor quality photo but low light = bad photo. (I’m not wearing make up, so maybe that’s OK.)

Why am I at the sauna?

I am at the sauna because my body is seriously bad at detoxifying. And now you are wondering why that’s important.

Here’s the way my doctor explained it. We are all exposed to toxins every day – in the air, in food, in plastics, etc. Most people are pretty efficient in dealing with them: toxins in, toxins out. 

I’m not one of those people. In my case it’s toxins in, toxins in, toxins in. Not so much on the out.

It turns out the body gets angry when toxins overstay their welcome. It’s probably why I have chronic lyme disease in the first place, and it’s most likely the reason I can’t get rid of it.

The theory is if I can improve my detoxification channels, I will stand a much better chance of getting well. So, I am doing everything I can to show toxins to the door.

The infrared sauna helps me sweat them out. Same goes for green clay baths. My diet helps as well – I try to eat nice and clean so I’m not introducing toxins through food. Additionally, I try to limit toxins in the home, in my beauty products, in cleaning products, and in food storage containers (glass, yes, plastic, no.).

Emotional toxins can have the same negative impact as environmental ones, so I do my best to clear those through talk therapy, meditation and practicing mindfulness. More on all this later.

In the meantime, I’m off to do my toxin free shower/beauty routine.

I See This View A Lot.

Fatigue attaches to me like a second skin. Occasionally I slip out of it, but usually not.

When it strikes, I hit my chair and rest. Sometimes for an hour, sometimes all day.

Fatigue is different than being tired. A nap usually ends tiredness. Fatigue laughs at naps. They have no power over fatigue.

My Lyme-induced fatigue feels like this:

My body feels heavy all over, as if I have lead in my veins.

I have heaviness behind my eyes. I picture it as black coal sitting behind my eyes, sucking my energy out.

I sit down in a chair and wonder how I will get back up.

Going up and down the stairs is exhausting. Sometimes I do it at a snail’s pace.

Sometimes I don’t have the energy to shower (and I am a shower-loving person).

My brain feels like a molten pile of cotton candy and it literally hurts to think.

So, it’s a blast.

This probably sounds a lot like depression. I have been depressed, and I have suffered fatigue, and I can tell you fatigue is different. It’s a beast. Oft misunderstood, judged, and not taken seriously. I’m here to tell you it’s real as a heart attack, as my husband would say.

I have spent a lot of time being frustrated about the way fatigue gets in the way of what I want to accomplish in life.

However, over time I have come to understand the futility of getting frustrated about things I can’t control, so I adopted a motto:

“Make hay when the sun shines. Rest when it doesn’t." 

I try never to lose sight of the fact it’s a blessing I am able to rest when I need to, unlike many who struggle with this dread disease yet still have to go to work.

In spite of the fact I am oh-so-tired, and my brain hurts, and I am in my chair for the foreseeable future, I have gratitude.

I have a husband who loves me, supports me, and works so I can rest. I have a daughter who is my whole heart. And the sun is streaming in as I rest.

I am in my chair, but my heart is full.

Life Gave me Lemons, So I Baked a Lemon Pie.

I have been waging a semi-successful, fully frustrating battle with Chronic Lyme Disease for five years. I’ve had success. I’ve had failure. I’ve had everything in between. I’ve tried everything, done everything, been to doctors all over the country, yet I cannot seem to get the upper hand.

As a result, my life has changed in dramatically painful ways. I am a fragment of the person I used to be. Every day is a physical and emotional struggle.

I do my best to meet the struggle with grace.

But I am growing weary. Oh, so weary. And on a particularly low day I found myself lost in the following thoughts: “I’m so sick of this, I’ve been dealing with this for so long, will this ever end” and on and on and on.

Then an opposing thought literally shot through me. The thought was: “None of this is helping you. The situation is bad enough as it is. Don’t add to it with with negative thinking.”

So I decided to turn back to the positive side. But I felt horrible, which made optimism a challenge. In that light, I decided to take stock of what would be possible for me that day. No, I couldn’t do any of the things Lyme Disease stole from me: the ability to run, the ability to eat and digest normally, the ability to think clearly, the ability to do things that bring me joy like volunteering, the ability to not feel pain on a daily basis. No, that’s all gone.

And then for some reason, the idea of a lemon pie popped into my head. And I thought, I can’t spend this day the way I would choose, but I can make a lemon pie.

That notion brought me more joy than I can adequately express. It changed the entire trajectory of my day, and the pie turned out beautifully.

Of course, it wasn’t really about the pie, though.