Fear // Lyme Disease

Hey blogging friends of mine! Despite the rest of this post, I am in a wonderful mood and am thrilled with life today. 😉 I know, that makes you curious, doesn’t it? This was a hard post to write. I actually wrote most of it in my head last night, while lying in bed. I hope it comes across the way I meant for it to, and that you will help me out at the end by leaving a comment (you’ll see what I mean at the end). Have a great Monday, people! It’s going to be a great week, isn’t it? 

Fear. Most of the time I don’t even realize I have it, then it materializes at random times, reminding me that yes, it still exists. Maybe phobia is a better word. Phobia: an extreme or irrational fear of or aversion to something

It’s the small things that bring the feeling of running in the other direction to me. A suggestion from Mom. A visit from a realitive. An email from a fellow blogger. Last night it was aching knees. Yes, you read that right. My knees

I’m not actually fearful of getting Lyme disease again. It’s more the overwhelming feeling of despair, loneliness and helplessness I get when I remember what it was like having the disease. Five years of my life were spent battling an invisible illness that we couldn’t diagnose. When someone goes through that from the time they’re fourteen until they’re nineteen, it takes up a huge chunk of their life. Then came the year and a half of knowing what was going on and fighting desperately to get rid of it. That was the hardest time. All the medicines, treatments and work left me exhausted, physically, emotionally and mentally. 

That’s why when Mom suggested the other day that I take a pro-biotic each morning, I was fine. But when she said I should take it when I first got up and 20 minutes before I ate anything, I almost panicked. Why was it so hard on me to hear a specific time frame? Because for a long time I had a whole list of things I was supposed to do. 

Take this twenty minutes before you eat. Take this two hours after you eat. Take this ten minutes before you eat, three times a day. Take this at least an hour after you take that. Take this right before you go to bed. Take this as soon as you wake up. 

It was as if my whole life was revolving around my vitamins, medicines and herbs. And I was never good at it. Therefore, it not only calls to mind an extremely hard time for me, but it also makes me think of how often I wasn’t able to keep up with what I was supposed to do. On my ‘bad’ days, I would sit there, looking at my little pile of vitamins for up to an hour, trying to get the energy to swallow them. Several years ago there would be times when I wouldn’t get out of bed until way past my usual time, because I knew when I did, a volley of tinctures, vitamins and no energy would greet me. 

Whenever I get really tired my knees start hurting. It’s a left-over from the Lyme disease, but something the doctor said shouldn’t last forever. To me, hurting knees signal a time to thank God for His goodness and His grace. He’s brought me through a really hard time in life and was with me every step of the way. When my knees first start hurting, I want to freak out. I’m overwhelmed with feelings of panic, remembering what it was like to not feel well. To ache all the time. Instead, I have to consciously think about God and His goodness. Have you ever noticed that it’s harder to make yourself do something when you’re really tired? Yep, it’s the same with this. But it’s worth it, because it doesn’t help anyone or anything when I allow fear to creep in and take hold. 

For me, I don’t feel as if I’m allowed to just forget what it was like to have Lyme disease. One of my relatives who was recently diagnosed with Lyme disease is a former teacher who tutored me for about a year during my fight with Lymes (when we didn’t know what was). Last month she told me “If I hadn’t been around you so much when you were sick, and if I hadn’t really seen how you felt, I would think I was the only one who ever felt this way.” 

And do you know what, when you feel as if you’re the only one and no one else understands, it’s a lot easier to feel sorry for yourself. I know. I experienced it. I would venture to guess that 9 out of 10 people (at least!) in the USA know what cancer is. Do you realize how few people know what Lyme disease is? I’ve even had nurses tell me that they don’t know what it is. Things like that left me feeling very alone. 

I want to write a book about a girl with Lyme disease. (I know, you would have never guessed, right?) This book is important to me for so many reasons. A few of the top ones are these: a) It will help people with Lymes not feel so alone. b) It will help people who know someone with Lymes be able to relate to them better. c) It will help people be able to figure out Lyme disease quicker. Do you realize that if you get it diagnosed right away, you can get rid of it within a few weeks? d) The lessons I learned through being sick for so long have helped me with every area of my life, and I’m guessing they’d be helpful for others to learn, as well. 

It’s hard writing this book though, which is one reason why I’m posting it as a continuing story on my blog, to make myself do it, because I know it’s important. So far, I’ve just been rambling around, trying to get a good voice for Madalyn. Soon though, soon (hopefully starting in February) I’m going to start in to her story with vigor. 

And if possible, I need y’alls help. As I’m working on the plot for When Life Hands You Lymes, it would be really good for me if I could know what some of your questions are about Lyme disease, having a chronic illness, etc… Anything you want to know, even if it seems like a sensitive thing to ask, just go ahead and spill it. I need some good questions to work with. 🙂 And, if you don’t feel like leaving a comment, you can email me at: aidylewoh at gmail.com 

Plus, as always, I’m working on making this book fun and light-hearted as well as deep. One way I’m doing that is making Madalyn so bubbly and outgoing. If you come up with any other suggestions, I would be delighted to hear them! Remember, this book is a collaboration of our efforts, so give me some ideas!

Thanks, friends, for helping me with this project. It means a lot knowing I have you standing behind me. Now… Ready, Set, Comment! 

12 thoughts on “Fear // Lyme Disease

  1. David Mabe says:

    Once again, I'm amazed by you. It's always easy for us to talk(write) about those things that are positive, like your first book being published, your trips with Buddy, so on. But to write about those things that put us in a place we don't want to go and to open up about our vulnerabilities takes a special strength. Until I started following your posts, I'd heard of lyme disease, usually from medical drama television shows, an episode of “House M.D.” comes to mind quicker than anything else. The knowledge I have of it now is what comes from WebMD and Wikipedia, and what you've shared, which is most important of all. From you, we get the emotional side of it. I do understand dealing with the chronic illness. My wife is a cystic fibrosis patient, and we're currently in the process of getting her on the list for a lung transplant. I myself am dealing with diabetes, which I call the family curse since everyone in my family has had it and I lost my mother in 2012 to it. The point I'm getting to, is I usually avoid talking about these things because I don't like to display what could be perceived as weakness. It's awesome that you are able to write and talk about it.

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  2. Cait says:

    I had no idea you had Lymes! My friend's father had/has Lymes Disease, so I know a bit about it…but I can't imagine having it. Writing a book about it sounds very interesting and I hope it works out well. I know it can be hard, sometimes, to write stuff when it's personal too. But good luck! Wow. You're a very inspiring person, Lydia!

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  3. Sarah Rudolph says:

    I think writing a book about Lymes is a great idea, though I'm sure it's hard. Go for it Aidyl! I have a question, though I know some of the answer… How do you deal with not being able to sleep much at night (was that because of Lymes?)?

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  4. David H says:

    Lydia, I love you.

    …David Mabe, Your last sentence or two are so true. I had lyme disease as well for several years, and before it was diagnosed I never wanted to tell anyone how I felt because no one would understand(except my family -kinda), and even once we found out that I had Lyme disease I still didn't want anyone to know because I didn't want people to pity me, or expect less of me. Because, like you said, it was a perceived, and yet very true weakness. In the last year, God's been working in my heart and showing me that it's ok to tell people about my time with Lyme disease, and my time(now) of recovering my health, because through all this time I can point people to the faithfulness of God, and tell them about what God has done in my life during these years of learning to trust Him.
    These years God has been teaching me to see anything and everything good, no matter how small, as God's grace, and even the things that don't seem good, as His grace. He knows the big picture… And I should, like the 10th leper, Return to God and thank Him for each act of mercy that He performs. And so I'm learning that my weakness through Lyme disease is an opportunity for me to be strong in Christ. He says that when I am weak, He is strong.
    By the way, Lydia is my younger sister. And I love her. a lot. Lydia, keep up the writing.

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  5. Anonymous says:

    Thank you for sharing this all with us, Aidyl. Writing a book with such a purpose is a great idea – and I am excited for you. Out of our struggles can come great things!!

    Rebecca

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  6. Aidyl Ewoh says:

    Thanks for sharing, David. I hope your wife is able to get on the list soon and that she'll feel much better. I can't even imagine having something like that. And wow, diabetes… Take care of yourself! I'm sorry to hear about your mother.
    And thanks for the encouragement! I didn't talk about Lyme disease on here for a long time, and I still want to be careful how much I do it, but I feel like it's important.

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  7. Aidyl Ewoh says:

    Oh! Nice question, Sarah! I had almost forgotten that I wanted that to be a big element in the book. I'll have to make sure to add it to the plot. 🙂 And yep, Lymes can make people's days and nights get switched around…

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  8. David Mabe says:

    One of the most important things that I've realized is that we can't let the conditions define who we are. We serve the Great Physician and He is in control. There's nothing that happens that takes Him by surprise. We have to be who we are in Him and let that define us.

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