I had a health update written last month and then hit a really rough patch and never got it posted. (My last health update is here.)

So 3 months ago (I can’t believe it’s been that long!) I wrote that I have Lyme disease and posted some links and assumed everyone would understand the situation I’m in. I got talking to a friend about it, who gently suggested that if I want people to understand my situation, I need to explain what Lyme disease means FOR ME right now.

It’s a legit point because Lyme disease is really different for everyone who has it. You really can’t compare one person’s situation to another because people present with different symptoms and can react differently to treatment. I’ve hesitated to share my symptoms because it’s just not comfortable for me to put this all “out there,” but I’m going to now. If I want to share my Lyme journey, then I just need to get this all out.

As a reminder of where I started, I have a bachelor’s degree in Computer Science and an MBA. I worked as a software engineer for 10 years before I decided to stay home with my kids. Shortly before my symptoms started getting really bad, I ran a half marathon at 7:51 per mile pace. That was then. This is now.

What Lyme disease means for me is:

• I run through life everyday on an empty tank. Have you read about the spoon theory? If not, go take a few minutes and read that link. Here it is again. Reading this is absolutely essential to understanding, and you may as well just do it now because I’m going to reference spoons throughout this post. I go through each day with VERY FEW spoons.
• Many days getting the kids up, dressed, fed breakfast, driven to preschool and back, fed lunch, and up for nap… is my absolute limit for what I can do for the day. Some days I don’t know how I even accomplish that much. Some days I manage to make it to the grocery store, but it has to be a REALLY good day for me to have enough energy to put the groceries away. Some days I get some laundry in, but it has to be a REALLY good day for me to put the laundry away. This is NEVER on the same day as groceries. That would be too much. If I do manage to do any of these things, I often find out later that I’ve overextended myself. I hardly ever clean. I just don’t have anything left in the tank for that. When you become ill, you redefine what is and isn’t necessary.
• I’m frequently falling asleep at the dinner table. I fell asleep after taking a shower in the afternoon a couple days ago… before I managed to get dressed. Getting through a day is hard.
• I can’t talk to you about anything fun I did on the weekend. I likely can’t talk to you about any plans I have for next weekend. I don’t have any spoons for that. Saturdays I often crash most of the day and on Sundays I go to church and then sleep. I rarely do more than that.
• I have bouts of awful dizziness. Sometimes it’s for hours. Sometimes it’s for days. With this, I often get blurry vision. Sometimes the blurry vision is on its own.
• I lose track of details. I forget what I’m telling you mid-story. I forget words. I mix up words. I need to set alarms and make lists for things I do everyday.
• Sometimes my patience is lacking.
• I’m running a fever a LOT. This is one symptom that’s been a little better lately, but I’m not out of the woods on this one yet. When I’m running a fever, I feel like I have the flu.
• I get numbness and tingling. Sometimes in my hands and feet. Sometimes a whole arm or a whole leg. OFTEN I get numbness in an entire half of my face. It kind of feels like I just got dental work.. all the time.
• Speaking of dental work, between severe dry mouth and whatever else Lyme does, I went from having one cavity my whole life to more than a dozen over a span of couple years. Along with the dry mouth came dry eyes requiring I use drops multiple times a day. A fish oil supplement called DHA has helped the dry eyes and dry mouth a lot. I really notice if I miss it for even a day.
• I also have acid reflux, which has caused acid erosion in my mouth.
• I have out-of-control muscle spasms. Most commonly in my face, legs, hands and arms.
• I’m on medication which makes me horribly sensitive to the sun. I’ve always LOVED summer and sunny days, but now I can’t tolerate being in the sun. I tried to stop taking the medication but only lasted a week because the pain was unbearable.
• I have pain. Sometimes unbearable pain. In my muscles, joints, and bones. Often in my back. The location of my joint pain is changing all the time. This is a classic Lyme symptom.
• I get a lot of headaches.
• I get tremors sometimes.
• I have digestive issues at times.
• I am exhausted but I have trouble staying asleep at night.
• I sweat a lot in my sleep, to the point I need to change clothes.
• My hormones are out of whack.
• I am constantly cold. My fingers and toes get so cold, my husband jokes that I should hold some ice to warm up.
• My immune system is in really bad shape.
• I’ve lost 25 pounds.
• Any amount of stress causes my physical symptoms to get a lot worse.
• I am on a gluten-free, dairy-free, sugar-free, and alcohol-free diet. We’re top-8 allergen free (plus coconut, sesame seeds, and peas) in my house, though, due to my kids’ allergies. I also eat all organic, non-GMO, free-range, grass fed, etc. I was on a much more restrictive diet before this, so this actually isn’t bad at all. People usually laugh when I tell them that.
• I’m on a LOT of medication and supplements. A lot. They are needed for nutrients, detox, thyroid, immune system building, lyme fighting, adrenal support, hormone balancing, and on and on.
• I feel like I am constantly going to the doctor. I have an appointment with a specialist on Friday for a test and a follow up. I have an appointment for a test a different specialist sent me for on Tuesday. This is pretty much how it goes.
• Most Lyme specialists do not take insurance, and there aren’t a lot of them. Mine does not take insurance, and I travel two hours each way for every appointment. I need someone to drive me. I have to pay for my appointments out of pocket and then see what insurance will cover out of network. But this is not even the expensive part. I’m taking “a mortgage payment worth” of supplements each month which aren’t covered by insurance. If you ever wonder why I’m so diligent about getting my sleep and sticking to my diet and taking very good care of myself, it’s a huge investment and I’d like to get better sooner than later.

I’m still doing poorly overall. Some days are better than others, but I am not having any good days.

Something a lot of people don’t know is that the treatment for Lyme disease is really hard. Killing off Lyme can make you feel terrible. Often, the body gets overloaded and can’t get rid of all the bad stuff fast enough. This causes what is known as a herx reaction, and herx reactions can feel a lot worse than the underlying disease.

I have been experiencing a lot of herxing as I’ve started my treatment. There are a couple things you can do here. One is to slow down, if needed. The other is to support the body in detoxing (that link is a great resource!) by using many different methods. So that’s pretty much what I’ve done. Slowed down, focused on detox like it’s literally my job, and have worked on ramping the treatment back up. If you hear me mention saunas or detox baths, that’s what’s going on there. I also do the obvious things like drink a lot of water, and have some other things in my arsenal like supplements aimed at helping the body detox, as well as other detox methods such as dry brushing.

I am happy to say I am tolerating more “Lyme-fighting” medicines than I was previously, so I’m making steps in the right direction. It just doesn’t FEEL any better yet. But this is the first step toward seeing what helps and what doesn’t and hopefully eventually we’ll find the right combination of medicine to help me fight Lyme.

In addition, my doctor has me focusing on boosting my immune system and fixing some health issues that are barriers to me being able to fight Lyme with all I’ve got, like my inability to sleep through the night and hormonal imbalances. There are a lot of pieces to the puzzle.

I feel like I should add some closing thought to this, but also I feel tired. And that is Lyme in a nutshell.