I recently wrote a completely different blog post updating everyone on what’s been going on in my life: my last 2 trips to Mayo, my oral surgery, etc., but decided not to publish it. Yeah, it’s been a fun time for me, per usual. That post was full of a lot of overly scientific stuff most people wouldn’t want to read about, and it wasn’t the most uplifting, either. The good news is that there is FINALLY some good news. My oral surgery went fantastically well (thanks to my oral surgeon, who is phenomenal). I was happily painting in my room that same night and felt great, which is a completely different outcome than the previous oral surgery- the one which activated the Lyme in the first place. I did have a bit of a relapse after the antibiotics from this procedure were out of my system, but it wasn’t as horrible as I had dreaded it would be. As for Mayo…well, I’ll just bite my tongue for now.
I’m still making every effort to find ways to enjoy life whenever I can, as I believe that is an essential part of the healing process. I’ve really been struggling with the cold weather because my thyroid and adrenals aren’t working properly (very common among Lyme patients). My body temperature has been consistently low- sometimes as low as 94.2 degrees, and yes, I do know how to take my temperature correctly and have used multiple thermometers. Not exactly ideal for a Chicago winter. There are times when I have 2-3 layers of clothing on and am curled up under 2 down blankets and I still can’t stop shaking uncontrollably because I’m so cold.
I was sooo very excited to go on a Thanksgiving Trolley my friends and I had all planned (many of whom I hadn’t seen in quite some time), but I felt absolutely horrible that day. I couldn’t even fathom the thought of moving because I was in so much pain, and to have to get out from under my covers and brave the cold weather…well, that just wasn’t happening. I was way too cold bundled up in my bed inside my apartment. I was so saddened by this because all I wanted to do was what seemingly every other normal young person in Chicago was doing- going out and having fun. As Rachel was leaving to go meet our friends, I told her I just couldn’t pull it together, started sobbing, and crawled back in bed.
As I laid in bed, beyond frustrated and upset, shivering and in pain, I started thinking about my last blog post: I said that I was going to do everything in my power to not allow this disease to control me anymore. I realized it was controlling me, and right then, I wiped the tears off my face, took a deep breath, and decided to stop feeling sorry for myself (I think I usually do a pretty good job of this, but it’s difficult to be strong all the time, especially when you have to sit there on the sidelines and watch everything that every healthy person your age, or even twice your age is able to do). So, I dragged myself out of bed, pounded a bunch of water, and took a detox bath. Well, that detox bath was a game changer. I was no longer shivering…I was actually warm! My pain was also at a much more tolerable level. Unfortunately, I had already missed the Thanksgiving Trolley, but I still had a bit of time to go say hi to my friends.
This disease can be so consuming and so isolating at times. It’s extremely difficult to keep up with relationships and everyone else’s busy lives when you’re basically living in hospitals and doctors offices- literally fighting for your life. It requires a lot of energy that I just don’t have…but that doesn’t mean that I’m not trying with all I have. It’s difficult for people to understand that.
By the time I made it out that night, many of my friends had scattered and gone home, but I was able to meet up with a few of them. Sure, I was sad to have missed the trolley and the opportunity to see everyone, but more than anything, I was proud of myself for sucking it up and making it out at all. I could have taken the path of least resistance and just stayed in bed- letting the disease win, but I didn’t.
A friend of mine who also has Lyme asked me why I don’t blog more about my struggles or my relapses or the ignorance I constantly face. Honestly, there are a lot of negative things I’ve had to deal with that I haven’t written about, but focusing on those things doesn’t reflect who I am or my attitude, and it also isn’t what other people want to read about. My goal is to create awareness and understanding- not make people feel bad for me. I have fought as hard as I possibly can against this disease and have come a very long way. I really want to be a source of hope and an inspiration to others, especially those who are also suffering with Lyme or any chronic illness. That doesn’t mean it hasn’t been a bumpy road. Truth be told, it has been very bumpy. This is not an easy disease to treat or deal with, especially late-stage, and I think I have been very honest about that.
The past week or so, my pain has been very minimal (yessssss!), but I have been suffering from debilitating fatigue. I’ve had episodes like this in the past, but usually coupled with insomnia- not actual sleep. Although I’m beyond thrilled to be sleeping, I’ve also never been completely incapacitated by such intense fatigue for so long. I can’t even capture this feeling in words, but a fellow Lymie describes it well:
“The fatigue of tick-borne diseases is not a general malaise that can be fixed with a nap or a cup of coffee. It is a crippling flu-like exhaustion, one that leaves muscles not sore but literally unable to function; one that makes the body feel shackled to the bed; one that makes the effort of lifting one’s head off the pillow seem like a Herculean feat. There were times, at my lowest point of illness, when I literally felt too tired to breathe.
It’s hard for someone who has never been that sick to understand what a person with chronic tick-borne illness means when she says, “I’m so tired.” I’ve had well-meaning friends say, “I’m tired a lot too,” but in the next sentence they tell me that they’re going to the gym or planning a party. This means they are “normal tired,” and while I sympathize with that, I wish there were more specific nomenclature to distinguish between our two very different definitions of fatigue….“Fatigue” is hardly a strong enough word to cover what it feels like when your adrenals are shot, your nervous system has gone haywire and your body refuses to function. Even as a writer, it’s hard to articulate exactly what I mean when I use the word exhausted. My best effort at putting “sick tired”—specifically, the sick tired of chronic tick-borne disease—in layman’s terms is, Imagine you’ve partied all night and wake up with the worst hangover you’ve ever had. Your head is pounding. You’re overly sensitive to light and sound. You stumble to the bathroom and barely make it back to bed. Whatever you originally had planned for the day—work, homework, a run—is out of the question. You’re not sure if you’ll even be able to manage basic tasks like bathing and eating. You roll over and go back to sleep. Then imagine you wake up the next morning with all of the hangover symptoms still there, but now, you also have the flu. Not just a mild case of the flu, but a full-on bout of intense fatigue coupled with aches, fever and chills. Imagine this feeling goes on for days, and then weeks, and then months, sometimes even years. That’s Lyme disease.”
To those who know me well, it might seem like I complain or talk about Lyme more than they would like, but I’ve really made a conscious effort not to do that. I try to appear as well as I can, but sometimes it’s too difficult to hide. Sometimes I don’t even know where I am or what’s happening or what someone is trying to say to me- I’ll be staring right at them and unable to process words. Sometimes I have trouble speaking and only fragments of words come out. Sometimes I can’t remember important memories, or what happened last week, or yesterday, or even 5 minutes ago. Sometimes I can’t help but wince in pain. I am seeing things improve slowly, though, which has been so encouraging.
One final thing I’d like to mention is facebook. People see posts in which I look happy- I’m smiling and doing fun things. They assume it automatically means I’m all better, or that I’m not really sick because I don’t look sick. You can’t see my pain or the symptoms I have to deal with. And I hope you understand that facebook isn’t a real representation of my life, or anyone’s life for that matter- it’s simply a reflection of how we present our lives. For the most part, I only post happy pictures…pictures people want to see…the ones of my ‘good days’. It doesn’t mean that I’m better or that I’ve beaten this illness, because I haven’t yet. And when I have a few extra ounces of energy and my pain is somewhat tolerable, I’m absolutely going to take advantage of that and go live my life. Just because I’m sick doesn’t mean that I shouldn’t be allowed to have fun and forget about my troubles once in a while, so please don’t judge me for doing that. I am doing better than I was, but I still have a lot of fighting and healing to do. Step by step, I’m getting there. I will get there someday. In the meantime, I’m just taking it one day at a time and enjoying life when I can.
I continue to Pray hard for you!
I’m thinking about you and hope things go better for you in the New Year.
You continue to amaze me, and you say it all so well for the Lyme Community. I have watched so many suffer with Lyme and have tried to find the words to explain it to those who want to listen so I will be using your words going forward and those you post. I hope this is OK. I will continue to pray for you.
Wishing you health and happiness in the New Year. Love Marge
Thank you, Marge. Please share my words with anyone you can. I wouldn’t be able to do this without your help and support, so thank you, from the bottom of my heart. Hoping it’s a wonderful year for us all…I’m very hopeful, especially now that I’ve found a doctor I actually really trust:) Lots of love to you!