LymeDisease has been sucking up the majority of my attention, and more of my energy than I like to think about, since September. Sometimes when asked “What’s new?”or “How are you?” I struggle to find words because my brain automatically says,“LYME LYME LYME, STUPID LYME.” On a bad Lyme day, it can be challenging for meto communicate at all. People are always telling me that I “look fine,” and that is because Lyme is often an invisible illness. Lyme is also not a one-size-fits-all disease. For many reasons, each person with Lyme can have a totally different experience with it.
Lyme attacks all the body’s systems. The longer you have it without knowing, the more damage it can do. In many ways, I am lucky when it comes to My Lyme. As soon as I got my diagnosis, my heart was checked; it is healthy. For that, I am grateful. I don’t suffer the joint pain and related issues that immobilize many with Lyme. For that, I’m grateful. While I haven’t been immobilized, I have been debilitated.
Last year, I started my own business as a postpartum doula. I was fortunate to work with three wonderful families and was on the road to certification with an international organization. I loved my job. Lyme has forced me to stop my doula work. The crushing fatigue and bewildering brain fog have left me barely capable of caring for myself and my own family – never mind another.
Luckily for me, I have another job, teaching a music class for small children, that I love, and am able to do on a part time basis. Really-super-duper luckily for me, I have a wife who brings home the bacon. Over and over again, I have thought – “Thank god it’s not her.” I can’t imagine the financial stress for our family if she were the one in my shoes.
But back to My Lyme. The most cut and dry symptom that I have had is a piercing headache above my right eye. No amount of ibuprofen can touch it. It is relentless. At its worst, it feels like a knife in my brain and makes it hard to keep my eye open and think clearly. At its best, it is a dull ache, that I’ve come to consider pretty normal. I have had this headache since September.
The fatigue is a weird thing. It is a deep, deep tiredness, kind of like something is sucking the life out of me. My body is always tired. My brain is always tired. If I rest for three days, I can almost feel like myself for one day before I crash again. It is boring as hell, and incredibly frustrating. I might have the energy to cook dinner, but that means laundry can’t happen. I might be able to do the grocery shopping, but then I won’t have the stamina to stand in the kitchen and prepare a meal.
As for the brain fog, it’s kind of like “Brit has left the building.” I forget everything. Having a conversation in a group is taxing. Hell, sometimes a conversation one on one is taxing. After I teach my music class, 3 times per week? 45 minutes of leading a class, singing, dancing, etc? I am TOAST for the rest of the day. Driving can be hard – on foggy brain days, I won’t get on the highway because I don’t feel I can mentally process everything that I need to in order to drive safely.
Anyway, I decided to create this space to talk a little about what I’m going through.
I received my diagnosis in October. The CDC protocol treatment for Lyme did not work for me. In January, I went to see a specialist to start my next phase of trying to get well. As of today, I am waist-deep in pills, still waiting on additional test results, and completely uncertain what the future holds with regard to my recovery.
One step at a time.