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 is that you are talking to, and at one point in my darkest part of Lyme I forgot where I put my infant daughter.
Write notes. Leave messages for yourself. Don't stress about it too hard, because that makes it worse. One of the hardest things for me as a writer, was realizing that I was losing some of my ability to spell and see little editorial issues. I've always been amazing at spelling, but as my disease progresses, my spelling skills began go slack. Thankfully I've found tools to help with that. But it is still so frustrating to know my brain is struggling with something I once thought so simple.
Truth #2 – This Sucks!
Little things like going to for a hike with your family, grocery shopping, sometimes just getting into the shower sometimes suck the life out of you. It is an energy draw to just get your daily things done, but adding in new things can often set you into feeling like you can't move at all.
Plan ahead. Take it easy before and after. Give yourself breaks and don't feel guilty for taking them.
Truth #3 – You Don't Owe Anyone An Apology!
I heard myself saying it a dozen times a day. “I'm sorry I can't get up with the kids.” Even though I wished I had more energy to get up and be the kind of mother I wanted to be. “I'm sorry I can't make it.” Cancelling plans was hard, but going and feeling awful all night was worse. You must set limits and stop tearing yourself apart for putting your health and needs as important as anything else on your list.
Talk to your friends, family, and anyone else who needs to understand what you are going through. Let them help you.
Truth #4 – Don't Be A Victim!
Here's the thing, Lyme disease is awful enough on its own without feeling sorry for yourself and letting it take power. You will never hear someone who has lived through Cancer or a serious injury say that lying in bed feeling sorry for themselves helped them to fight to regain the life they wanted to have.
Honor your fear, your depression, even the pain. Then get your ass up and fight this fucking disease like your life depends on it. Because it does. Your body needs you to get up, move around, eat healthy, get some damned sunlight! Being a victim only makes you feel like you have no chance.
Truth #5- Remember You are not Alone!
It is terrifying to wake up in the middle of the night feeling like Death is standing over your bed. Your heart beats so rapidly that you can't keep up with the calming thoughts. Your pain level is high and the idea of walking to the bathroom to take more meds makes you almost cry. In that moment it feels like you are all alone and you might just be the only one who understands this terror, the idea that you might not live.
This is when you need to remember that others do understand what you are going through. There are groups forming, blogs like this one who are starting to feel brave enough to talk about our truths, and people even in your neighborhoods that are also fighting for their lives and maybe even for their loved ones. Reach out, talk. I promise that the next time you are lying on the bathroom floor wondering who will find your dead body, you will find strength in knowing that this… this awful moment… it's something we are all going through.
What are your truths about living with Lyme Disease or another chronic illness? Share in the comments! And if you liked this article, please share it!