One of the more troubling issues that I have due to having Chronic Lyme Disease is that my brain has suffered some neurological complications. It’s worrisome knowing that your brain has been damaged by a disease without a cure.
I often have numbness in my hands or random other places, pain that pops up out of nowhere, a weakness that comes on fast, visual disturbances, stiff neck, and severe headaches.
But the worst symptom of them all is the rage and change of my personality. It's been called Lyme Rage, but it's an ugly dark thing that slithers around and shouldn't have any excuse. Sometimes I don't even want to think about what I've said to the people I love.
Lyme Encephalopathy – Lyme Brain Damage
Lyme encephalopathy is the most common late-stage neurological problem related to Lyme disease. Typically, Lyme encephalopathy symptoms include decreased concentration, irritability, memory loss, and nerve damage in the arms and legs. There are times I’ve woken up feeling like needles are being poked under my toenails over and over.
It can also cause radical personality changes, trouble regulating mood swings, and outbursts.
My Lyme Routine
Regular B12 injections have brought my tremors down to subtle twitches for almost two years now.
I do massage therapy to reduce pain in my joints and hands. Before treatment, my muscles would clamp down and reducing the blood flow.
With CBD I've also been sleeping much better and able to get through most nights without as much discomfort that was always worse in the middle of the night. Sleeping better helped me deal with my symptoms better during the day and my memory issues and concentration lapses were much less than before my meds. The CBD has also helped with pain and some anxiety.
The cost of being sick
But as with anything, all meds come with a price to pay, and more and more I question how much I am willing to pay for the quality of life I wish to have. Side effects are never fun. Nausea, IBS, and weight gain are sadly a part of what it takes to keep moving, thinking clearly, and not suffering
The cost builds up. Some of my medications are covered by my husband's medical insurance, while alternative treatments and herbal supplements are not covered. I feel like a terrible burden on my family. Even though,I work as much as I can, there are days when I can barely move off the couch. I worry what will happen if I wound up without insurance. Will I die?
I’ve been on so many different medications, from beta blockers, muscle relaxers, antidepressants, anti-anxiety, MS drugs, heart drugs, and so many more.
However here's my issue. When I am taking my meds, I function well, but the most frustrating side effect is the lack of creativity, the mood swings, and my struggle with writing and words. Thankfully, I have Grammarly to help me keep writing. I think without having the ability to write, my depression would take over. Grammarly helps me to feel like I haven't lost that completely. It helps not only correct my spelling, but to help me to make better sense out of what I am trying to say.
Yes, I had a much more difficult time with thinking clearly when the Lyme bacteria was in my brain, and the meds I am taking have an Anti-Fungal property to them and have pushed the Lyme bacteria, Borrelia Burgdorferi, out of my brain. Yet I can feel clearly the change in my writing and my creativity when my meds are at full strength.
So there's the trade-off. Do I enjoy being a writer and artist and feeling music emotionally, or do I live with fewer symptoms?
It's a hard choice to make and one that I am really struggling with from day-to-day. Is a long life better than one lived fuller?