Something today got me thinking about Lyme disease. I was thinking that one of the worst parts of it, for me, was the social withdrawal. After I got sick and kept getting sicker, I stopped making plans. I got tired of canceling plans with friends, and they got tired of being canceled on. So I just stopped trying to go out and see people. I couldn't predict if I would feel strong enough to go to the movies on Friday. Most days I couldn't predict if I would be strong enough to sit upright and eat dinner.
When my doctor didn't know what was wrong with me, he thought maybe depression was causing my problems. But it was the other way around. Being that sick *causes* depression. Being in constant pain is depressing. So is crushing fatigue. Scary mystery symptoms, wondering if it's all in your head, trying to explain to people what's going one when you really don't know yourself.. all not fun. All depressing.
I don't know how many times I looked around me and saw tasks that needed doing, and couldn't do them. I couldn't vacuum. I couldn't pick things up. I couldn't scrub the toilet. I couldn't wipe the kitchen counters. I couldn't stand up long enough to wash dishes. Every few weeks I would rest up and summon the energy to clean up a little bit, and then I would be wiped out again for a couple of days.
Just thinking about those times is upsetting. I had to push people away because I didn't have the energy to deal with them, and that hurt all of us. But with the level of fatigue I experienced, even having somebody come to the house to sit with me was beyond my endurance. Getting up to answer the door used up maybe 10% of my energy for the day. A few times people stopped by unannounced, and after their visits I sat trembling in fatigue, waiting for the energy to be able to climb the stairs to go to bed. Because answering the door and reclining in a chair, not even keeping my head up, had totally drained me.
Normally this would be the point where I would offer advice to friends and family of the afflicted, but I can't think of any. If you're so sick that just having people be there makes you worse, I don't know what helps. I certainly didn't come up with any solutions for myself. I had to wait until I got better. And that was a very, very slow process. More than a year after I got sick, and after five months of antibiotics, I started dating JD. It was a leap of faith for me. I still didn't know if I had the strength to carry on a social life, but it was important to me to try. I didn't want to lose the chance I had with JD.
JD got to witness a few crashes. He saw how paranoid I was about energy expenditure. I didn't want to plan long outings because I knew it was likely that midway through them I would have to be the big downer, ask to go home, and be sick and helpless. It was years before I could have enough faith in my own body to be able to plan a day long outing and be pretty sure that I could do it all. JD got to pick up the pieces on quite a few failed attempts - leaving me somewhere while he went to get the car, holding me while I shook in fever or fatigue, getting me an ice pack, making phone calls to cancel and apologize for me.
Despite two more bouts of Lyme since then, I feel stronger now than I did before my first go round with Lyme disease. I am fanatical about exercise, about trying to eat right, about taking my vitamins and getting regular medical care. I start antibiotics and herbs as soon as I suspect I have Lyme disease again. I am hyper aware of my muscles, my joints, my lymph nodes, and my limitations. I am careful to try not to injure myself, to try to avoid infection of any kind. With all those precautions, I am healthier now than I have been in a long, long time.
And I am terrified of ticks.
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