I was finally diagnosed with Lyme Disease in 2013 while we were living in New Hampshire. I say “finally” because I had actually gotten sick in 2006 and then extremely sick in 2008, when I was so sick I chose to quit my job. It took 7 years for someone to figure out what was wrong with me. That may seem surprising to you, but it’s actually a very common Lyme story. Once I got a handle on what was going on I realized that taking care of my health was going to be serious business. The past two years have definitely been a struggle, but I have also used it as an opportunity to carefully examine things and work on making adjustments that help my life run more smoothly.
10 Life Lessons Lyme Has Taught Me That You Can Learn Too:
1. Ditch Toxic. Toxic people, toxic stuff, toxic behaviors, toxic emotions. Life is just simply too short to hang out with toxic people. People who display behaviors that go against the needs of a healthy relationship. Life’s too short to surround yourself in a toxic environment full of toxic “stuff”, too short to fill your body with toxic food. Too short to hang on to your own toxic behaviors whatever they may be, too short to have toxic emotions that beat you up all day every day because of feelings of inadequacy, marital issues, family issues, appearance, jealousy, past mistakes, not standing up for what you believe in, whatever it may be that you beat yourself up about on a regular basis. Make a list of non-negotiables, stick to them like glue even when it’s hard, and treat yourself and others with love and kindness. Value the life you’ve been given.
2. Don’t Take Ignorant Comments Personally. I have found that we all feel we’re a little bit of an expert on a little bit of everything. It’s human nature for people to give opinions. I am full of them! But, in certain situations when you really are an expert on dealing with something unpleasant, the negative nellie’s of the world can really get under your skin. The number one complaint of people who have a chronic illness (besides the illness itself) is other people who aren’t supportive and/or say stupid, hurtful things. “You don’t look sick. You just need to get more exercise. Drink more water! But you seemed fine yesterday. You’re up and moving around, I thought you were sick? It’s all in your head. You’re always sick. Why can’t you get better? Quit making excuses. There’s no such thing as……” Eye rolling, gossip, being laughed at, being told you’re weak…. People can be really mean and not just strangers. Unless you are speaking to someone who is suffering from something similar, it’s highly unlikely they will ever fully understand what you’re going through and most won’t even give it a good try. In any situation you’re going through in life where people are making ignorant comments, you need to decide whether it’s worth the energy to try to explain it properly, and if it’s not, just nod and smile and move on. Stop looking for support and acceptance in all the wrong places.
3. Form Your Circle. All of us need a safe, close, circle of people who we can trust and rely on no matter what. I’ve heard many times and agree that this circle for people with chronic illness and people diagnosed with major illness is often small. Partly because of the ignorance I discussed above, and partly because when you end up sick, or have a crisis, or need someone to have your back, the relationships that were never really close and genuine, fall away. It’s painful, but a fact of life. Save your energy for the people who stay. You absolutely need a circle who you deeply value and who deeply value you. This may be only a few people or 10 people, but it’s imperative.
4. Join A Support Group. Meeting people who have the same interests and similar struggles can be life changing. It can make all the difference in how you view what you’re going through. I belong to private online Lyme groups filled with hundreds of amazing people of all walks of life. By private, I mean no one outside the group can see the posts or comments. These groups have been a tremendous help to me. Not only with information and ideas, but with loving support. No discussion is too bizarre, or too whiny, or too scary, or too real. You can be open and completely honest, which is sometimes difficult to do with close friends and family who are not going through the same thing you are. In the support groups we’re there to learn, understand, listen to each other, and lend support. There’s a lot to learn from other people who are going through the same things you are. Another really important part of being in a support group is the recognition that someone always has it worse than you. Much, much, worse. That’s a real eye opener when you’re feeling really blue. Listening to what others are going through forms friendship bonds and helps with feelings of isolation in illness or anything unpleasant that you’re going through. Even on your worst day, you can be a voice of love and compassion to someone else.
5. Keep Moving Forward. Stress can be debilitating. Many people don’t understand that stress is not just a bad job, a snotty teenager, a bad marriage, money issues, a neighbor’s barking dog, crappy customer service, or a hateful relative. Illness itself is also a major form of stress and places your adrenal glands under constant pressure. They pump out cortisol more than they should which sets your body into “fight or flight” mode and imbalances your hormones. Too much cortisol lowers the immune system, causes anxiety among other things, and interferes with your body’s ability to rest and repair properly. Trying to keep all the stress in your life from inside and outside sources can be very difficult. There’s not a lot I can do to cure the stress that Lyme Disease causes inside my body, but once I could visibly see how stress from outside sources dramatically aggravates my health, I had to make big changes in my life. I had to ditch the toxic like in #1 above. I have to focus on taking care of myself properly inside and out. I focus more on doing things I love that bring me peace and being around people who strive to be peaceful and are also looking to lead a healthy life inside and out. Sometimes that can be really difficult and obviously, we can never fully remove stress or stressful people from our lives. Most of us have a lot of clutter and static that we simply do not need but hang on to because we’re used to it in a kind of dysfunctional, comforting way. It’s more harmful than good. Do whatever it takes to get rid of as much stress as possible, and every day do things that help you move forward toward more peace and more joy in your life.
6. Learn How To Say No. I come from a long line of people pleasers. Saying “No” to people is difficult for me without feeling piles of guilt. I’m still in the learning and practicing stages but over the past three years, even though it’s uncomfortable, I’ve made progress. Feeling guilty for not wanting to do things, guilty for disappointing people, guilty because you feel like crap a lot and it affects other people, guilty because somehow it feels kind of shameful to say “no” and not to worry about what other people think about it. Some people have zero problem with “no” or feeling guilty about saying no. But most people are just like you and me and struggle with it a lot. If we want to be healthy in our lives, we have to recognize that we simply cannot be a yes woman/man all the time. We need to work toward getting rid of the guilt of not always being the person everyone wants us to be and doing the things that everyone wants us to do.
7. Every Day Is Different, Embrace It. This is one of the most misunderstood symptoms of chronic illness, especially Lyme Disease. I am not exaggerating when I tell you that literally, every single day is different for me. One day I can feel relatively fine and the next day I can wake up feeling absolutely terrible from head to toe. I can go back and forth like that for weeks, even months. This can make it difficult to make future plans. I do plan things, but typically only very short term and when I have to plan something for the future, I dread it. I guess that goes back to the guilt and anxiety of saying no, or about feeling terrible about letting people down or looking like a flake because I can’t follow through or have to cancel. I have a very small circle of people that I feel comfortable doing things with. This is only because I can relax and feel crappy when we’re together and be fine with it and so can they. I do life sick, that’s the reality, and I need a comfort zone. We all need a comfort zone. I have come to realize that I have to exert a lot more energy to do life sick with people outside of my circle. Sometimes I have that extra energy and sometimes I don’t. I’m learning how to be OK with that and to not worry that people may not understand. That works for every rough patch we deal with in life. Be OK with what is best for your health and well being.
8. Examine Your Past, But Not Too Much! Many of the reasons behind who we are and how we handle things have to do with how we were raised. Now this is not a license to pick on your parents! A little past examination comes in handy though when doing some soul searching and dealing with life’s ups and downs. Whenever I’ve been ill with anything throughout my life, it always made me feel really anxious and uncomfortable. Fearful of what, I didn’t know, not death because that doesn’t scare me, but just plain anxious and fearful. Dread. Guilt. Doctor avoidance. So I did some thinking and it occurred to me that both of the main women in my life hid their symptoms and their illnesses throughout much of my childhood. By “hid” I mean they didn’t tell anyone until someone found them out. I remember walking into the bathroom and my mom was leaning up against the counter gasping for air. Her lung had collapsed and she didn’t want me to tell anyone! And that wasn’t the only time things like that happened. I can only guess that she learned those behaviors from my grandmother because she was the same way. She hid chest pains and all kinds of things from us. “Don’t tell anyone, don’t want to worry anyone, I can handle it myself, I’m fine…” That sends a message that there’s something wrong with being ill or being vulnerable and in need of help. On my father’s side, I remember my grandma telling a story about my great grandmother that was extremely unsettling. She collapsed on the floor and when the paramedics arrived and ripped open her shirt, she had been treating herself for breast cancer. She had an open wound on her breast that she had told absolutely no one about. What is it about us women in particular that makes us want to hide and feel guilty about being ill? Millions of people in the world face illness every day, unfortunately it’s quite common place. It does not need to be hidden and the reality of it should not be feared. This is a hard reflex to change, but I try diligently to work on it. We need to be a tower of strength for each other, not hide from each other. We need people in our circle who support us when we’re feeling vulnerable. Life whether good or bad, should not be faced alone.
9. Focus On The Positive. Many people have said to me, “You have such a positive outlook!” I appreciate those comments, because that is what I and certainly most people in life in any situation strive for. Am I always positive? Of course not. Having a chronic illness comes with a lot of mixed feelings about all kinds of things. It’s confusing, and irritating, scary, and often painful and debilitating. However, I have learned that if I’m feeling blue or anxiety ridden, I only allow myself a little bit of a pity party. Swimming in despair is terrible for you, but so is cramming your worries and not working through them. I think through the main things that are upsetting me and then redirect with prayer, or talking to a trusted friend, taking a walk, reading a good book, playing with the dogs, catching up with friends on Facebook, baking, shopping, praying for other people who are struggling, journaling, gardening, photography, focusing on blessings….whatever it takes to get myself back on track. You absolutely MUST have a list of things that bring you joy that you can turn to, even when you feel like total crap and you think your life is falling apart. Your outlook can make or break you.
10. Trust That There’s A Plan For Your Life. I am a firm believer that my whole life is figured out and planned. Every single thing that happens, happens for a reason and is instrumental to my life for reasons I may or may not understand at this point or…ever. And though I firmly know that in my heart and soul, sometimes my brain wants to tell me otherwise and I get caught in the trap of trying to control everything myself. Trying to figure it all out and make it nice and tidy. Surmountable. Trying to map the future and the outcome. God gives us many, many, tools to deal with life, none of which give us details on how every minute of our individual lives are going to pan out. That’s where trust and faith enter the scene for me. You need a foundation of strength that is unwavering, an anchor that is outside of yourself and is not associated with another human being. When I get caught in the loop of endless hours of research and reading and unanswered questions and what if’s, and uneducated doctors, and ignorant people, and chores I don’t have the energy for, and family issues, and anxiety, and all the “stuff” life throws at every single one of us every day, I have to force myself to step back and remember, “God’s got this.” He’s never let me down. He’s always had it all figured out, it’s been proven to me over and over again that every single thing happens for a reason. Why do I forget that? The blessing of faith and trust, is that I don’t have to have it all figured out all the time. Imagine that. The pressure is off. We can deal with stuff as it comes to the best of our ability and that is all we can do. We need to learn to let go.
Super Easy Steak & Vegetable Kabobs
2 Grass Fed New York Strip Steaks (or meat of your choice)
2 Organic Cloves of Garlic, peeled
1 teaspoon of Organic Fresh Thyme
1 teaspoon of Organic Fresh Rosemary
1 teaspoon of Organic Fresh Parsley
1/4 Cup of Gluten Free BBQ Sauce
1/4 Cup of Apple Cider Vinegar
Sea Salt & Ground Pepper
Cut any tendon or extra fat off of the steaks and cube. Place all ingredients in a zipper bag, mix, and marinate all day in the fridge.
Organic Cremini Mushrooms
Organic Bell Pepper
1/2 Cup of Unsweetened Pineapple with 100% Pineapple Juice
1/8 Cup of Organic EVOO
1 teaspoon of Organic Oregano
Sea Salt & Ground Pepper
Place all ingredients in a zipper bag, mix, and marinate all day in the fridge.
Place meat and veggies on skewers. Preheat grill to 400 degrees. Grill 5 minutes or so on each side for medium rare.
Excellent list! There are lessons in everything we go through in life if we will only see them. Thanks for the reminder.
We’re a work in progress! 🙂
Your kabobs look amazing and I think I’ll cook these one night this week. That sure is a long time to have to wait to be diagnosed but yes, I’ve heard it’s common with lyme disease. I also believe that my life is planned and mapped out. You certainly have learned some important and valuable life lessons xx