My experience with Lyme disease has been life-long – from my youngest years I remember having “arthritic” pain in my hands and fingers, and my wrist joints and tendons were often painful and without full range of motion. I was in my late 30s before I had even a clue that Lyme was my issue, and it was thanks to a friend who was going through the same thing.
Lyme can mimic meningitis, fibromyalgia, chronic fatigue syndrome, and so many other things. Chronic infections are common, and while you feel like you’re constantly sick, there’s no consistency in symptoms. It doesn’t feel like one, over-arching disease lasting decades; it feels like minor respiratory infections, peppered with fatigue, neck pain, tendon issues – all of which feel disconnected from each other.
Some of the major Lyme symptoms I’ve experienced (click here for a full Chronic Lyme Symptoms Checklist):
- headaches
- dizziness
- fatigue
- muscle and joint aches
- swollen joints (mostly in my hands)
- swollen lymph nodes
- vision changes that go back to normal when inflammation subsides
- cognitive decline, brain fog, and difficulty speaking
- tendinopathies due to spirochete infiltration of collagen
- infections, including upper respiratory and bladder infections
- chronic inflammation, even found in an ultrasound of my uterus, performed due to my hormonal issues (which are likely related to Lyme as well).
- “Lyme meningitis” – this is not bacterial and isn’t fatal or spreadable like true meningitis. You typically don’t see this in the early stages of Lyme, and this symptom typically means Lyme has started to affect the central nervous system. Symptoms include headache, neck stiffness, nausea, vomiting, light sensitivity and/or fever. Meningitis is inflammation of membranes covering the brain and spinal cord, and with Lyme causing full-body inflammation this is just another part of the inflammation cycle.
- electrolyte imbalances and heart palpitations due to electrolyte imbalance (Lyme can eventually affect the heart)
Headaches, fevers, and tendon issues have been chronic since I can remember. Hormonal issues started at 17 when I began vomiting for 9 hours straight the first day of every period, to the point I’ve had to be hospitalized several times for going into shock; simple Ibuprofen can stop it, leading me to believe this is just another inflammation cycle. Meningitis symptoms (including neck stiffness so bad I couldn’t turn my head without severe pain and spasm) started in my early to mid-20s. My early 30s came with dizziness, vision changes, and brain fog. It was bad enough having no real long term memory, but losing my short term memory was a new low. Stress became a major trigger – minor stress would lead to a minor upper respiratory infection (cold), major stresses had me dizzy and puking.
Despite all of this, I really thought I was fairly healthy. I knew I was prone to getting sick, had headaches, at times couldn’t turn my neck at ALL, but I still perceived myself as healthy. Interestingly, it wasn’t until I was about to turn 40 that I’d start to get my health back, and start to look back and realize just how sick I’ve been all these years.
These works were created as I was learning about Lyme disease and coming to terms with the knowledge that I was experiencing a chronic health crisis. Though the signs had been staring me in the face my entire life, I was fully experiencing the fragility of my existence – of 40 years of pain – all crashing down on me in a blink of an eye.
Taking Back My Health:
Above: We built our new kitchen in “Gilda May” around the idea of this lighted peninsula for my indoor herb garden! Oregano in the forefront is huge for helping Lyme symptoms!
My husband and I bought our first house in our early 20s, and I started gardening soon after. I never really liked herbs until my mid- to late 30s – while I loved to garden, all of my plants where flowering beauties that satisfied my aesthetic needs (artists love beautiful things!) but they never really had a useful purpose! Fast-track to my late 30s, as I’m learning about Lyme and as I’m trying to bring my horse back from his own disorder (visit my PSSM blog to learn about his muscle disorder). I decided to try herbs to help keep my horse more comfortable, and it was thanks to my 1,200 lb love (Jax) that I learned just how potent herbs can be, and started focusing my gardening on both beautiful and useful plants.
I toyed with herbs for myself for some time, but didn’t really get serious until after I saw major health changes in my horse. Before that point, I ended up trying the keto diet, as my husband was doing it and it just made sense to cook only one meal at a time! I realized after a few months that my symptoms of inflammation, neck pain, tendon pain, and so much more were disappearing! The brain fog was gone, and I was able to form sentences without stumbling over my own words. This is when, for the first time ever, I was able to explain the meaning and thought processes behind my artworks – I had never been able to utter anything other than “because it’s aesthetically pleasing” before this. I ended up adding herbs to my regimen and felt on top of the world.
Toying with diet led me to realize that gluten free was my major need, possibly above herbs. I’ve found that after a few days on gluten the inflammation signs start creeping up and building. I typically follow a gluten free, low carb with extra fat and protein diet, though I’m not strict keto and eat all fruits and veggies, including root vegetables (high starch and not at all keto!). Exercising and keeping stress down is also extremely important, as even when following the diet and using herbs, I still get dizzy spells, neck pain, and hormonal nausea with stress.
This dizzy spell is brought to you by my real estate career – it lasted less than a year for reasons I won’t go into here… Towards the end I was pretty stressed, and one day I climbed up to grab a plant off the top shelf (I should have known better as the dizzy spell had been building all week) and I crashed down through the shelves breaking this entire set. Those sad little plants in the wreckage are my rosemary plants (one of my favorite herbs!) – 5 of the 6 didn’t make it as these plants HATE having their roots disturbed, but I escaped with only a few bruises.
Lyme is hard. They say what doesn’t kill you makes you stronger, I say the jury is still out on that. However, there are proactive steps you can take to make your life better, even with something like Lyme disease. This blog is a work in progress, but is built on my everyday decisions to “live my best life.” I have a lot of help with that from my very supportive husband; anyone fighting something like this needs as much support as possible, so I’m very thankful for both him and those in my family I’m close to. The trick to living your best life is not in searching for “happiness” – that’s obtuse and elusive. The trick is in pulling in the things you truly care about and letting go of those things that, in the grand scheme, don’t really matter. I love horses – in particular my PSSM horse – I forego a lot of things to keep him and to keep him well managed. He is one of the most important things that I need in my life (I was a shell of a person without my horses!). He’s the “big one” – the thing I sacrifice for most. I’ll sacrifice art for the next week to massage a sore muscle that’s causing him pain. I’ll sacrifice those gorgeous rose bushes to buy his supplements for the month. There are also smaller passions – those that fit into a busier life that can make things worth while. The other things I pull close to me are my pets (I’m a sucker for a cute cat face!), my artworks when my tendons allow, yoga because it helps me feel good, and my plants – these don’t have the same levels of sacrifice, so they fit into my life around my symptoms, my horse’s management, and my family needs.
For anyone reading this, my challenge to you is to really focus on what brings you joy – don’t make this about another person, make this about you. What is your passion? Find one thing – just one – that you can let go of to bring that passion closer to you. You can start small or go for the big one, this decision is yours and yours alone.
My example of going for the big one was buying land and bringing my horse home: I had boarded Jax for about 3 years when he crashed with his muscle disorder, and when it became obvious that I needed to be able to bring him home. With no land, that wasn’t even a possibility. As the years went by and my horse continued to suffer episodes, some due to being somewhere I couldn’t watch him closely (read as anywhere but home!), and some due to inept boarding practices. I finally had to make a choice; live like everyone else, or give up everything “normal” for that one thing… The life transformations that came from this choice are like nothing I ever expected, and there’s so much to cover that I’ll leave you with this link if you want to read more.
An example of the smaller ones are taking a moment to clear a flower bed for a special plant I’ve been wanting, or resting my arms for a day to work on art the next evening. You can make this as simple or complex as you like, you can start simple and build – this is your journey. As they say, you can’t keep doing the same thing and expect things to change. The first step is recognizing there’s a problem – which I suspect is why you’re here. No matter your situation, there is joy to be had, there are ways to live your best life!