The day I found out I had Lyme disease I remember sitting on a beach in the Bahamas with my family standing around me feeling very overwhelmed. I was no stranger to the illness, my daughter had been diagnosed a year before and was doing pretty well, so what was I worried about, I would just put my head down and bulldoze my way through this just as I had every other challenge I had faced in my life. Boy was I wrong!! A year and a half later, I look back at the person that could slap on her superhero cape and go go go, and it feels like she is a million miles away. You see, I never understood exactly what this disease was capable of. I was the supermom that was fighting for my child and had to find out every ounce of information that I could find to get her better. I was educated, I still can tell you anything you want to know about the ins and outs of battling Lyme, but to live it, well that is a completely different story.
For a few days last week I was great, I thought okay I am on the other end and now, new medications are working and I can catch up on work and the house. It was great while it lasted! Today I was finally able to lift myself out of bed a little after noon to get my day started. As a "Lymie" you like to see yourself as a warrior and we do fight, don't get me wrong, but some days we just don't have the strength to do battle. This is the part of the disease that no one could have possibly educated me on or prepared me for. I would not have believed them! "Me no way, nothing can keep me down, I will work off the flu if I have to." You see, us warriors, don't like to talk about this part of the illness, the anxiety, the fear, the smile that we put on our face because we are really NOT okay. The days when the simplest tasks like cooking macaroni and cheese or paying the water bill seem absolutely impossible because our brains have been invaded by tiny little spring like worms called spirochetes (more on these little buggers in a later post). You heard me right, I have worms in my brain! That in itself should explain alot! Those of us who suffer from Lyme are scared to death that people are going to think we are crazy, that we are weak, that we can't handle our life, so we stay silent. We send text messages with smiley faces and thumbs up, when we are laying in bed or sitting in the car crying. We take on tasks that we know are going to push our limits, and we smile and say "no problem, I can do it." We listen to people who say, "oh that is just everyday life I feel like that sometimes too" or "well you sure don't look sick," and we grit our teeth and smile and say "your right it will be fine." We lie! No matter how much support we have, we lie to everyone around us because lets face it, we are not quite sure what the truth is, but we know what we want it to look like. We have no idea what our limitations are, they change from day to day, sometimes hour to hour. We can't tell you if we will be able to decorate a table for the Valentine banquet at school because as much as we feel like it today, or as much as our mind says "come on do it for the kids," that day may come and we may not be able to lift up our head, or everything around us may be one big echo of loudness. In our own eyes yet again we have failed and let everyone down, and to the eyes looking on we are unreliable.
I miss the days of feeling empowered, like I could conquer the world rather than just being okay with conquering dinner. I miss the pre-Lyme me who could work all day and coach a softball team that night and still get dinner done and cupcakes made for the school party the next day in time for story time before bed. If there ever was a cure for suck it up and move on, its name is Lyme. The doctors say, "you have to slow down and give yourself time to heal," but how do I heal when everything around me makes me sick? Not to mention that life doesn't stop until I heal. The mortgage company, the electricity, the cellphones, don't stop on the days that I do. The bills are not put on a hold until I feel better, a time-out is not an option. Some days I just want to run away and find a place to heal my mind and my body. To be able to have something that resembles a life with my family that is relaxed and predictable, boring even! Boring would be great! A place where I can start to remember what the old me looked like. I miss that woman, the one that didn't feel like she whines all the time, that doesn't feel like a failure at life, that had fun and laughed alot and that lived her best life rather than the #Lymelife. I keep hoping she will reappear one day but until then, I will educate. I will tell others story through my own. I will take up my sword (or keyboard) and I will make sure those who live this life feel validated, and the ones who love someone with Lyme can learn.
So shout out to all of your Lymie's out there, whether you get up at noon or never, whether you go to work or barely get a shower, wherever you are in your journey may you be proud of yourself for getting there! And by all means...let's talk about it!
