I’ve been fighting Chronic Lyme Disease most of my life. I went undiagnosed for over 20 years and suffered through the debilitating symptoms that leave many bed-ridden and depressed. But Chronic Lyme Disease doesn’t have to mean the end of the world, it is just a new world and YOU oversee direction you are going to go in.
Like many, when I was first diagnosed and told that at that stage of the disease there was no cure, I cried. I was in shock for months that this was really what was happening to me. My doctors didn’t have a lot of answers and the few they had were bleak.
I got depressed and I stayed there for a long time. The more scared and upset I was about my forecast, the worse I felt physically. Then began the vicious cycle of medications. I had meds to combat depression, then meds to combat anxiety. Then there were conversations about the weight I was gaining because of all the medications. I cried when I didn’t feel like going to my daughter’s school events. I cried when I looked in the mirror. I cried when my husband told me I was beautiful, because I knew he was lying.
Then one day I was lying in bed seriously thinking of ending it all. The pain of moving, of breathing, of knowing what I’d become was too much. I couldn’t handle the guilt of what I was doing to my family. I was done. I had a choice. Either get my ass up out of that “sick bed” and do something about it or give up and die.
Thankfully I am still here.
Every day is a struggle. Some days are harder than others. But the best medicine for fighting Lyme Disease and the depression that comes with it wasn’t a pill. It was taking charge of my own mental health, going to a therapist once a week to vent and cry and move forward, and sometimes saying “fuck Lyme Disease” over and over in my head until I could get up and get out of the door.
Before I was diagnosed with Lyme Disease I wasn’t really concerned with how much protein I ate, how many greens in my weekly meals, or if I was consuming enough B12. We were a normal family with pizza nights, junk food days, and picky eaters.
After I began to take charge of my disease instead of allowing doctors to medicate me to death, I realized how important food was to my battle. I also came to understand how many things we take for granted deeply affect our health.
My family and I switched to a Pescatarian diet, a diet much like a vegetarian diet only with fish added in. We started off as only vegetarian until my youngest started having issues and it was recommended we revisit fish. Now we have a well-stocked pantry and fridge full of healthy snacks, fruits and veggies, and know that it’s all right to have a treat from time to time. But the preservatives, artificial coloring and sugars, as well as ingredients that most can’t even pronounce, they don’t belong in our home.
Recently after struggling with some stomach issues and feeling sluggish, I went to a naturopath for advice. She recommended that I remove gluten and dairy out of my diet for 6 months and see how I felt. 15 pounds lighter and full of energy, I think I’m sticking with the new diet. I love it and once I learned how to eat differently, the more I realized how much dairy and carbs we consume daily.
Get Up and Move!
I get it, sometimes moving is painful and all you want to do is nap on the couch. But that kind of thinking did more harm to my body than the Lyme Disease. Your muscles weaken and are easily damaged.
Last year I injured my foot, something as simple as stepping down incorrectly, and I’ve been in pain every time I walk. After 20 weeks of physical therapy, acupuncture, massage, and numerous doctor visits, I am still in pain. Why? The muscles in my feet were not strong enough, now I am working through the issues to correct it.
Every time you pass up the change to get up, move, get stronger. You pass up the chance to fight your disease. You pass up the chance to get stronger and even happier.
Maybe running isn’t for you. Fine! It isn’t for me either. I’ll run the day zombies start clawing at my door! But I will get up every hour during the day and until bedtime and I’ll walk for a few minutes around the house, or outside if I can.
I saw a quote at a cancer center. “Sitting is the new Smoking”
Yeah… it hit home hard. Get up and move, NOW.
I have a reminder on my watch to get up, walk around, and move. It goes off every hour. Even when I am in pain, I must stand up and at least stretch. I will not lie down and die just yet.
Find your Tribe
For a long time, I felt so alone in my disease. There were no races for the cure for me, no ribbons of support. My family did their best, but my disease affected them deeply too.
I reached out in the beginning to find others with Lyme Disease, searching message boards and WebMD. Sadly, I found more nonsense than support. So, I retreated.
Then a couple of years ago, I started talking about Lyme Disease to others. Sharing my struggles. I was surprised to find that not only was I not alone in having Lyme Disease, but just about every person I talked to either knew someone with Lyme or had a story to share. Lyme is everywhere.
The more I shared my story, the more connected I felt to others also learning how to shine in the darkness of Lyme disease. Those sparks of light were also dancing to the same song I was hearing, fighting to overcome something that often felt greater than we were.
Through Twitter, Facebook, and my blog, I was able to reach around the world and find others like myself also looking to support each other in our battle. It isn’t that hard to find your tribe when the world is at your fingertips
Take responsibility for your health
Lyme Disease can be controlled. You can go into stages of remission where life starts to feel normal. But that only comes after you have mastered your health. You follow up with your doctors, you don’t smoke or do drugs, you make being healthy your priority.
Sometimes I become a bit stressed about overseeing my health, I avoid shaking hands, I do my best to stay clear of sick people, and still I feel like it might not be enough. Yet that is how I take responsibility for my body and my health.
You must have your own inner dialogue about what you are willing to do to win your fight with Lyme Disease. Then challenge that dialogue with healthy options.