Have you ever been so tired that just the thought of moving makes you want to put your head down and cry? There are days that I know I swim in the heaviness of exhaustion and my eyes beg to close for just a moment. I don’t dare because I know that I won’t open them again for hours. Sometimes when my Lyme Disease is rearing up, I fight this… Read More »Exhausted – A Lyme Disease Symptom
One of the hardest things about having an invisible disease is trying to make it through the day. Some days are routine and other days there are hurdles that you have to get over. But you always have to face starting over again the next morning. There are no days off, no vacation days, no holidays off from being sick. For years I tried to forget about having Lyme. I… Read More »Lyme and Spoons
Share Pin Tweet I love to garden, but it’s not for the reasons you might think. Gardening helps me to fight Lyme Disease, improves my mental health, and helps me to feel like I’m contributing to helping the planet and my community. Let’s be honest, I hate mornings, and I really struggle to get out of bed early. Sometimes it is physically painful to get up and move, and I want… Read More »Gardening is my best weapon against Lyme Disease
I’ve had Lyme almost all of my life. It’s a part of me and my day to day. I know it’s unusual, but often I forget that it is anything different from anyone else. But sometimes there are things I wish my friends knew about my life with Lyme Disease.
My battle with Lyme Disease began before I knew I had it.
Like many people I was misdiagnosed for many years before finally being diagnosed. Everything from MS to Anxiety have been on my medical records. Lyme is commonly misdiagnosed, leaving people wondering if their friends or family are making up their illness and the victim wondering if they will ever find relief.
I was likely a small child when I was bitten by a tick carrying my future inside it. My body has been fighting an invasion since I was in elementary school. I spent my 20’s wondering why I couldn’t keep up with people my age. Now I know.
Sometimes I need to rest to let it catch up.
My “Resting Bitch Face” isn’t what you think.
I live with pain. Every day, every hour, something hurts somewhere. Sometimes it’s an ache or a dull throb, other times it is the painful sting of inflammation. I manage it the best I can without meds because I know in the long run, the meds are very damaging to my other organs that are also fighting this disease.
I get tired, frustrated that I can’t get up and dance with my friends like I used to, even a little envious of a few of you who can enjoy a few cocktails and night of dancing. But my RBF is judged pretty hard even though I’m actually happy to be able to get out and hang out.
Sometimes I just can’t.
One of the hardest realities of living with Lyme is knowing that your immune system is awful. You have to measure your strength with expectations.
It is embarrassing to have to message a friend ahead of time who has been complaining about being sick to warn her that you just can’t be with her because you can’t take the risk of getting sick for the next few weeks.
Kids are cool. But they are also germ magnets and while post parents are used to their little ones cruising from one illness to the next. Sometimes I just have to take a step back from kid friendly events when I know it is flu or cold season in the schools. It isn’t because I don’t love the kids, but because I can’t give weapons to the bacteria I am already infected with.
I’ve even had to turn down coming to see new babies because the siblings were sick with the flu. It was awful.
I don’t go to the gym and I am okay with it.
These days among my friends, everyone is trying to get summer bathing suit ready or in “cruse shape” because some of us are headed on a trip together. They talk about their marathons, weekend gym dates, and diets they are currently on. And I smile and listen, I think it’s great that they are excited about it.
But I don’t go to the gym and I don’t diet.
Instead I am in physical therapy usually twice a week to try to keep my muscles from locking up or to settle the pain in a bad area. I have regular visits with my doctors to make sure my heart is staying strong and my liver isn’t getting worse. I’ve watched my weight climb up and down with each switch of my medications and cringed when I looked in the full length mirror. After a workout I’m exhausted for days and in pain for a week.
I’ve learned to accept that I might never get down to a 7 again, but I will keep fighting a disease that’s entire goal is to kill me. And when I look at my body that’s now patched up with scars from surgeries and battle, I know that I am thankful that today I am not bedridden and I can go walking through the Farmer’s Market to enjoy the sweetness of life without guilt.
You can talk to me about my disease.
I’m pretty sure that most of my friends know I have Lyme. But I don’t talk about it much. Usually because few people actually ask me about it.
I know they must have questions or wonder why I cancel at the last minute a night of dancing and fun. They just don’t ask. I wish my friends knew that they can come talk to me about my illness and I am happy to answer all of their questions. Lyme Disease is difficult, but harder when you feel like nobody understands you.
We didn’t ask for this, a life of questioning, doubting, and wondering how much longer. But a life with Lyme is still a life. Day by day, you learn to live your life beyond Lyme Disease. It’s is hard and frustrating. However, knowing you aren’t alone helps. Truth #1 – Forget It! Living with Lyme means your memory is BAD. You forget why you walked into a room, who that person… Read More »5 Upsetting Truths About Lyme Disease
One of the more troubling issues that I have due to having Chronic Lyme Disease is that my brain has suffered some neurological complications. It’s worrisome knowing that your brain has been damaged by a disease without a cure. I often have numbness in my hands or random other places, pain that pops up out of nowhere, a weakness that comes on fast, visual disturbances, stiff neck, and severe headaches.… Read More »Brain Damage From Lyme Disease
I don’t do well in the cold, my Lyme acts up and everything hurts. My body becomes so sensitive to the cold that even my hair hurts. Cold sensitivity is a symptom of Lyme Disease and for me, one of the worst. Lyme hurts. It’s a painful, frustrating, scary disease to have. But what seems to be the worst symptom of Lyme Disease is fear and blame. You can’t live… Read More »Rage Against The Dying and Lyme Disease
I know that posts haven’t been as regular as they should be. I’ve just been a bit tired and distracted. Call it the holiday blues, the winter slow down, stress, or whatever name you want to give it. I’ve just been tired and distracted. Many of my readers know that I have Chronic Lyme Disease. I have this strong belief that the more you focus on being ill, the sicker… Read More »How To Manage Exhausting Holiday Stress and Chronic Lyme Disease.
“What’s the worst thing that can happen to you with this disease?” she asked me on our first meeting?
Looking back, she was asking a different question. She honestly had no idea what Lyme disease was and was asking for clarification. But I heard the one I needed to hear. I heard a challenge.
I’ve been fighting Chronic Lyme Disease most of my life. Chronic Lyme Disease doesn’t have to mean the end of the world, just a new world and YOU oversee direction
When we got married, we had a lot of crazy things on our minds. For us, it was already complicated. We started things off by throwing every obstacle in the world at our marriage. We launched right into having a family, not a small one.. one cute kid and a dog, but a large one ending in 5 kids, dogs, cats, and a ton of debt that we managed to… Read More »In sickness and in health