Life changed. Suddenly the body I once had, once used for loving life-it plummeted. It looked the same with the exceptions of bags under my eyes and yellow skin. My brain. My organs. My limbs. My moods, hormones, my joints and muscles. What was happening? I didn’t understand. I didn’t know.
Toxins from Lyme disease not only effect the brain, but Lyme can literally move into the tissue. However, brain related issues doesn’t necessarily=Lyme in the brain.
I’ve struggled with this organ. When in the heart of sickness, I found myself reverting to the simple: children’s books, old black and white TV shows, stories I loved in my childhood. I remember reading ‘Little Women’ while using my GB 4000. Give me the simple. Give me the childlike. Somehow, simple things comforted me; my brain could relax and enjoy, instead of battling to understand.
Memory. I had next to no memory. Learning how to bake or cook new food was a joke! I couldn’t remember: did I put 3 or 4 cups of flour into the bowl? I’d dump it out and start over, only to again lose count partway through the measuring process. Mustering brain energy, I’d intensely focus: 1,2,3,4. Done. Add baking soda, only to lose count of teaspoons. My story. The girl with the exhausted brain.
I’d walk to the fridge for carrots and return with celery or lettuce. Or head downstairs to remove clothes from the washing machine and end up making my bed, cleaning my mess from the day before and return upstairs unaware that I’d left the original mission unaccomplished. Ugh!
Lungs & Liver
For some reason, my liver seemed to be a target. My skin daily grew yellower and yellower. I felt sluggish, gained weight, often felt loaded and ‘gross,’ like my body needed to have a giant water hose run through it to wash all the ‘bad’ stuff out. I now believe my tiredness and weakness also came from an overloaded liver. I don’t know what else was low- functioning, but my lower back was always covered in red spots and bumps. Not necessarily what we would call ‘zits’ but more like red, itchy bumps. I knew nothing of supporting the liver. It struggled along.
Lungs were another issue. I couldn’t get enough air, even if I tried breathing deep. Now I know: its a symptom of Babesia, one of the primary co-infections of Lyme.
I couldn’t run. I couldn’t climb uphill. Even after 1+ years of treatment my lungs kept me from many an activity. As I improved, I began hiking. It was ridiculously slow. If my lungs got to pumping, I’d be incredibly fatigued the next day. If not, muscles might be a bit sore, but I would be fine. I still don’t understand the “why” and its still a problem to this day, though significantly decreased. I wonder if there is something else going on, or if my lungs are just weak from lack of exercise?
There were times I would lay to sleep for the night and experience a disturbing ‘brushing’ beneath the skin of my legs. It was as if there was a tiny something on the inside of my skin and it kept moving.
My legs. Most often I would feel it in my legs. Throwing aside the bed-covers revealed …nothing. Sometimes I’d rub hard to make the feeling go away.
The mornings after were not fun. I’d awake to numb arms and legs which felt as if they were disconnected but still attached to my body. Like wooden stumps or a false leg. Numb-like, yet slightly tingly. I can’t describe it. It was never a good sign. Those were often my ‘crawling’ and ‘dish-breaking’ mornings.
Rolling out of bed after forcing myself to awaken, I’d make my way into the hall and up the stairs, collapsing in the sunlight on the floor. My ritual. Let the sun soak in!
Crawling was easier because it took less concentration. And I was worried. I never went back downstairs those mornings if I could help it. Those legs were strange in their responses and I didn’t want to take a tumble down the unforgiving, tile-lined stairs.
I broke dishes on those mornings. Crawling into the kitchen, I’d pull myself up on the counter. Grab a plate from the cupboard. I could get my hand under the plate, but sometimes I couldn’t hang onto the plate. Yet my brain told me I was grabbing it firmly enough. “Time to lift and move” it would instruct. I’d lift and move to take it from cupboard to counter. More than once, the sound of shattering glass resounded through the kitchen. And then I’d have to clean it up. Limbs. It was strange.
They do strange things to our bodies. For a while, hormones messed with my sleep. If I didn’t get to bed before 10pm, I’d be wide awake until 1-2am. I felt most alert in these hours. Torture, when so exhausted. I was missing my best sleep, was thoroughly worn out but unable to find sweetness nothingness of sleep. I’d lay there, staring into the dark. Why? Why did I wake up at bedtime hours?
Other strange things were happening. The length of my monthly cycle diminished until it was almost non-existent. I’d awake to night sweats. This=bed sheets soaked in sweat. My body would be so hot, then so cold.
“Am I going through menopause?” I wondered. It appeared that my body was shutting down hormonally. Perhaps I’d never be able to have children. Who knew? I didn’t care so much at that point. I just wanted sleep.
Joints & Muscles
My joint pain was minimal. Hardly worth mentioning in light of other people’s battle. A knee, an ankle, a collarbone, the back, previous injuries flaring up. My wrists and elbows. I felt it there regularly. Nothing too extreme. Just a dull ache. Muscles were incredibly tight. Rock hard, particularly along the back and shoulders. Massages were painful. Too painful. No one massaged my back. Ever!
I’m thankful I didn’t experience severe pain in this regard as so many have!
My challenge even today is rationing out my physical energy. When so sick, I needed to know dates and events at least 1 week in advance so I could be certain to do nothing and save energy for the upcoming day. Even then, a bad night would put me under and I’d sadly (and once again) back out of plans.
Today I take on much more, but depending on how much effort and energy I’ve put into living life (visiting, a hike, home or farm care) depends on what I do the next day. Come my monthly cycle? If I can’t take 2-3 days of down time then, I know I’ll need extra time after to re-cooperate.
I’ve learned to ration my energies. In fact, most people don’t know I’m not normal. I was accustomed to going 110%, and now I have to go 85%!