I've had Lyme almost all my life. It's a part of me and my routine I know it's unusual, but often I forget that it is anything different from anyone else. This is just who I am, just like being a woman, or a writer. But sometimes there are things I wish my friends knew about my life with Lyme Disease so maybe they might understand a little better.
My battle with Lyme Disease began before I knew I had it.
I don't remember not having pain or exhaustion. I have good days where it isn't so bad. But this is my day-to-day. I get up every morning and look at the list of pills or vitamins in my daily routine. I will never have a life without Lyme Disease.
Like many people, I was misdiagnosed for many years before finally being diagnosed. Everything from MS to Anxiety has 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 fought 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.
Here are a few things I wish my friends knew about Lyme Disease:
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. My liver has issues, I have tremors that shake my hands and my short-term memory is awful. Yet I manage it the best I can without meds because I know overall, 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 when I'm thinking too much, I think about what the future holds. Will I be able to care for myself? How long before I'll need a stairlift to help me get upstairs?
My real friends know I am not the bitch my face likes to pretend I am.
I use CBD and Cannabis to treat my Lyme, Anxiety, and to try to live longer.
I didn't use to talk about my cannabis use. Part of me was almost ashamed that I had turned to “Drugs” in order to get through the day. After years of talking it through with my family, I started seeing that using cannabis was actually helping me to live a full life and it was giving them back the woman they love. I heard Montel Williams speak about cannabis use and the one thing that helped me to break free of the taboo and weed shaming world was when he said “If your friends are standing there with a glass of wine or a beer, judging you for smoking cannabis. Fuck Them!”
I would rather use cannabis, in both hemp and marijuana form, and know that I am feeling better, happier, and helping my body fight this terrible disease, than to be sad and bed-ridden again. That's the choice. The meds that they gave me for so many years for Lyme Disease destroyed my thyroid, my liver, and made me fat. I don't use CBD to get high, I use it to live.
Cannabis is how I fight and I am proud to say that I'm winning.
I know my limits and I have to honor them even when I wish I could do more.
One of the hardest realities of living with Lyme is knowing that your immune system is awful. You must measure your strength with expectations.
It is embarrassing to have to message a friend ahead of time who has complained 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 most 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 “cruise shape” because some of us are headed on a trip together. They talk about their marathons, weekend gym dates, and diets they are 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 wish my friends knew about Lyme Disease because I've beaten it, but for now… I'm happy to teach them.
I know they must have questions or wonder why I cancel at the last minute. They just don't ask. I wish my friends knew that they can come to 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. So go out and talk to your friends and let them know what you are really going through. You might be surprised at how much better life is with their understanding.