It's been roughly 36 months since I started treatment for Lyme disease. I was 36 years old when symptoms first appeared and 11 years later, I'm still battling it.
Here are the stats to-date:
I had a good day two weeks ago. I fixed my hair, put on lip gloss and jewelry for my doctor's appointment. As usual, I look way better than I feel. I tried to take a selfie because I felt so good that day, but I was failing miserably. Mr. Wild Dingo mocked my selfie-taking skills. He wrangled the iPhone away from me and took this shot with the grown-up camera.
My neurological and cognitive function have improved a lot. I no longer lay on the sofa every day but can sit at my desk and write or do chores around the house. Hey, I even cleaned my oven! I practice yoga again, almost daily and I'm at about 50% of my normal practice despite the intense joint and connective tissue pain that plague me. I work ridiculously hard at reducing the joint and connective tissue pain with therapeutic self massage using therapy balls to get the tissue moving again. I can get into headstand, but my core and upper body are very weak. I get out of bed every day with pain in my ankles, knees, back and elbows and sometimes my fingers. Some days the pain is not so bad and some days the pain is so horrid, I cry. But at least I have mobility again and my brain function is almost normal.
I'm hanging onto this 60-70% recovery by the skin of my teeth. My new reality, for now, is a strict anti-inflammatory, no-sugar diet. Seriously, Internet. I am the queen of "everything in moderation, including moderation." I mean, it's a scientific FACT that a full pint of Chunky Monkey ice cream can cure a broken heart. But in order for me to feel like 70% a normal person, green drinks and a no sugar diet (including no fruit) are the way of life for now. In fact most of my diet is plant based, no sugar, low starch and low animal protein. I'm no vegetarian but after 8 years of Lyme disease plus 3 years of assault by antibiotics on my digestive system, I can't just plow back into a diet of everything in moderation. I have a long way of healing the GI before I can eat like a normal person.
I have to admit, they don't look appetizing but my green drinks taste like chocolate. I swear, Internet, they're kind of addicting actually. So much so, even Mr. Wild Dingo drinks one per day. The secret is adding a little unsweetened cocoa powder and a few shakes of full-leaf stevia extract added to the greens, spirulina, maca powder, chia seed and raw coconut. It's extremely sweet and doesn't take much. And there's a study that showed Stevia (the full-leaf extract, not the processed powder) kills Borrelia burgdorferi, in vitro (but it's not known what does in the body), so there's that.
I still don't leave the house much to do things I once enjoyed, like socialize, go out to dinner or go to a movie. My body and brain still can't process the world like it should. But looking at me, you wouldn't know I was still sick. And that's something.
Recovering from Lyme-MSIDS is a very slow process. But I'll get there. And someday this will all seem like a bad dream.
You are incredibly brave and strong to endure all you have. 60-70% recovery sounds like some good news. We will continue to keep you in our thoughts and prayers for that full recovery you so deserve.
BTW, you look great in that photo:)
you look fabulous and i love the flower photo. hoping you continue to improve.
Your story is still so amazing to me. You hang in there--it sounds like you are on your way to a strong recovery. So much courage!!!
And you look gorgeous in that photo, whether you felt well or not!!
You've been through all of that and still looks gorgeous. That's one thing that is so hard about things like this is because you don't look sick so most people don't believe you are as sick as you are. I'm so glad you're improving and I hope you can get the rest of the way a lot quicker than you've gotten so far. You will beat this!
How nice to see your beautiful smile! Will you take me for a walk??
Reading your blog gives me comfort, strangely, perhaps because, I feel you understand me. In this Lyme journey, we are on our own figuring out, first getting a diagnosis and secondly, figuring out what works, as we inch our way to wellness. You describe beautifully how we sense the world when we are affected by Lyme neurologically.
I am undergoing an Eastern Medicine herbal approach to combating Lyme, detoxifying and rebuilding my inmune system. Like you, I have found that a plant based diet and no sugar, makes me feel better and does not feed the bacteria. Mine is a a case of treated Lyme that resurfaced with full blown neurological symptoms due to stress that built up over a period of time.
I trust your recovery is making steady progress. Thank you for sharing the particulars of your journey so we can learn from you.
I love your writing style. 🙂
Contemplative, dreamy, wistful and accepting of what is.
Thank you Caitlin, your words mean a lot to me. Hearing from you made me We are in this together. After a bad relapse, I went to see the "big guns Lyme Specialist" who miraculously lifted my anxieties right after meeting him. Currently, I am undergoing the detox he prescribed before starting the long journey of antibiotic treatment. There is only one way out, powering through, like the pilots landing on aircraft carriers do. My husband introduced me to this concept and I have applied it often applying it in real life and using it descriptively. Cheers for a wonderful 2017, forever better, M