On the PCT: Sidelined with Lyme Disease

Throughout my fight with Lyme disease, I have tried to be patient and calm.  After finding that anxiety and depression got me nowhere, I have tried to embrace a Zen attitude about being ill for an indefinite period of time.  I have worked to relish the good days and accept the bad days, acknowledge the failures but savor the successes.  I don’t feel like doing any of that today.

Today, I feel the need to write a rare, less-than-optimistic post.  Forced off the Pacific Crest Trail because of Lyme, I’m not in the mood to look for the silver lining of my illness, not interested in thinking about the gratitude or perspective being chronically ill has given me.  Stuck in bed, tired, dizzy, achy, and twitchy, I’m finding it difficult to be positive or hopeful.  Today, I need to rant.

I’m angry.  I’m angry that some bacteria that entered my body when I was bitten by a barely-visible tick four years ago has the power to knock me off the trail, which I was hiking as a fundraiser for Lyme disease research.  I’m angry that the same bacteria makes it difficult to hold down a job or go back to school or be in a relationship.  I’m angry that it has changed the course of my life in dramatic ways.

I’m frustrated. I’m frustrated that, according to the CDC, I never had Lyme and that, if I did, it would have been cured a few years ago, after a couple weeks of antibiotics.  I’m frustrated that there are so many unanswered questions about Lyme, that there is so much research that needs to be done.  I’m frustrated that there are so few doctors who are familiar with treating it and that there are so few success stories.  I’m frustrated that many people are far more ill than I am and that it seems as though little is being done to help them.

I’m sad.  I’m sad that being sick made me lose some friends.  I’m sad that a shortage of “spoons” made me flaky and unreliable.  I’m sad that a gap grew between some of my old friends and me, as I could no longer easily relate to twentysomethings who were able to live like typical twentysomethings.  I’m sad that people who’ve known me when I’ve been well aren’t sure how to respond when I’m sick.  I’m sad that our society doesn’t understand invisible illnesses and that a whole lot of health privilege goes appreciated.

I’m grieving.  I’m grieving for the years that I can’t remember and for the year I’ve basically lost to being bedbound.  I’m grieving for the brain I used to have, the intellectual competence and confidence I once knew.  I’m grieving for the way I used to be able to make plans for my future, for the feeling that I could achieve most anything if I worked at it long or hard enough.  I’m grieving for the marathon I haven’t yet run, the Masters degree I haven’t yet earned, the career I haven’t yet found.

I’m tired.  I’m tired of feeling like I’m fighting this alone.  I’m tired of not knowing what my next step should be.  I’m tired of wondering what the spirochetes inside of me are doing, of having no idea that the troops are rallying before they rise up and send me crashing.  I’m tired of being sick.

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27 comments

  1. You said it for many, many, many of us. Good job! And thank you for the effort of this fundraiser project.
    So sorry your courageous through-hike got sidelined by the buggers. It was a great trip, vicariously, for us forced stay-at-homes, so thank you for blogging on it.
    Here’s a toast to many more and very happy hikes in your life and total success against the lyme!

    Liked by 1 person

  2. So sad to hear that nasty disease has raised it’s ugly head again and forced you off the trail. But most of all sad to hear you are suffering again. Just remember how much you impressed two campers at Lake Morena with your fortitude and determination, when we saw how much pain you were in and that you managed to get up and back on the trail the next morning. When so many others, myself included, would have thrown in the towel that night. Now take time to heal and reflect on how much you’ve accomplished. Somehow, I think that strong amazing woman we met, will pull herself back together and move on to accomplish more of her dreams and goals. This, too, shall pass.

    Hugs, Marie and Dennis

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  3. First off, I am really sorry your trip got off trail- I always say – for now. You may come back another day or year, and find more wonder-you never know. Life can be long and interesting. I wholeheartedly agree Lymes sucks. It was 37 years ago in July I found a weird red bullseye rash on my leg in the wilds of northern Minnesota. I had no idea what it was. About 5 years later I read a headline talking about a new disease called Lymes. Even then they still didn’t have a treatment. So I just kept on my merry way with odd inflamed joints that would come and go and more odd side effects. It’s not as bad now but it still shows up. I just got back from hiking Vasquez Rocks this evening-remember that cool place?- and as it did this morning, I could feel it in my ankle joint. It hides in/near synovial fluid in joints for me. But remember, obviously you are not alone, obviously you still dream big beautiful ideas and act on them, so it’s obvious to me that while it does impede you, and may curtail things for periods of time, you will still have a great life with great times like the one you just had. I am wishing you more fantastic experiences down the road. You win- Lymes has to take a back seat if you have the power to plan and do awesome things! – Mary the Trail Angel in Acton, CA

    Liked by 1 person

    1. Mary, thank you for the well-wishes and support. “For now,” indeed. I appreciate your motivational tone, as well as the mention of beautiful Vasquez Rocks. It’s inspiring to know that you’ve been able to force Lyme to take a backseat in your life!

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  4. So many things I want to say in response to this, but really you’ve said it all. You know about ‘spoons!’ Well girlfriend, you’ve got titanium sporks. That’s sort of joke, but it’s also to say that you’re doing amazing things that are all the more inspiring because you are still dealing with all the other emotions of a chronic condition. You are not alone because you’re reaching others with your words and actions, and it sounds like you’re always moving forward to see what’s around the next bend. Thank you for showing your vulnerability and because of that your strength.

    Liked by 2 people

  5. Hun, pure and simple I am sorry. it is not fare. HOWEVER, to do what you did (Whitney) that i couldn’t do if I had to (Altitude issues) and I am “healthy” you are a rock lady! Thanks for carrying me along in your pack along the trail and to the summit. And I know Rainbow Dash will be dashing along again!

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  6. Hello, I have a FB Lyme group called Lyme Expressions And Fellowship – LEAF. LEAF is all about Lyme patient stories. One of the gals in the group posted your blog about your Lyme experience today on her personal FB page and I decided to feature it on LEAF. Your an excellent writer and so many of us can relate to what you are going through. In fact I have been in a nasty flare for a week. One that is hitting me hard both physically and emotionally; much like you are experiencing. I have been grieving for a few days as the flare up knocks me down while the rest of the world is enjoying their summer vacations. Yup, its really hard. But we fight through, and do the best we can to take very good care of ourselves, mind-body and spirit. You’re not alone Kristin. Your story has only been posted on Leaf about 30 minutes and hundreds have already read it. You’re NOT alone. Keep fighting with me/us, your Lyme warrior brothers and sisters. Lizzie

    Liked by 1 person

    1. Lizzie, I just joined LEAF; it looks like you’re doing wonderful things for the Lyme community! If there’s any way I can help with your efforts, I’d be more than happy to!

      I so appreciated your comment; your words are truly inspirational. Thank you!

      Wishing you well on your healing journey.

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  7. Those of us who have Lyme have all been there. You speak for so many. I’ve been there too. My son is there and he is only 12 and sees no hope. Don’t give up! There is a reason for everything. I’ve only begun making progress to get my life back since I’ve been taking essential oils. Hold onto hope! My prayers go with you. If you want to know about my essential oil journey that is turning things around for me I’d gladly share. But I certainly know all too well where you are at. Peace be with you!

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    1. Ruth, thank you for your comment and kind words. I am so very sorry to hear about your son; I sincerely hope that the youngest Lyme fighters will be able to see the results of much Lyme research before they reach adulthood. Wishing you both strength, courage, and peace on your healing journeys.

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  8. Bummer, Kristin, but do what you need to take care of yourself. I just made a donation for the full amount to ILADEF. Some of your pledgers may not realize they have to do additional steps to make their donation go through, and if they’re anything like me, they’d want to be made aware so they can continue to show their support for you. Because you rock!

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  9. I’ve heard about a new ultraviolet machine called the UVLRx that’s being used for Lyme patients. It uses a fiber optic thread which is inserted directly into the vein and the treatment lasts for an hour, so all the blood is treated. Has anyone tried this?

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  10. Hey I am hoping to hike the PCT next year and I have Lyme for over four years too… We are very similar except I’m older. I just found yours and this is the first post I’ve read. I’ve begun a blog Hallietat.wordpress.com and it’s called A Lymie hikes the PCT! It’s short now but I talk about getting ready for the hike, gear and my struggles to get well. Hope you all read it! Great job Kristin! Love yours!

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