Day in the Life

The funny thing about this disease to me is how some days I manage to live a relatively normal life and start thinking to myself, "hey, this isn't so bad" and then just days (or hours) later I find myself shocked that I manage to do anything at all. I've been watching random YouTube videos this week made by other Lyme sufferers around the world describing their lives and symptoms. It's always interesting to see how others describe this experience. It's like having the flu, or a hangover, for years on end. It's like living in a dream, where nothing seems real. You live as a shut-in, rarely (if ever) leaving the house. You are completely dependent on others, except no one understands why.

It is easily the most bizarre illness I think I've ever heard of, because all of these are true. One minute it just feels like a hangover, and then suddenly your vision blurs, you have to lie down immediately, and you wake up on the floor 10 minutes later trying to remember how you got there. Just weird. The other day I was home alone and was trying desperately to think of something to make for lunch. My brain had room for only one thought--bacon--which was of course the one thing I had forgotten to pick up at the store during my last grocery trip. I wasn't feeling stellar, but other than being really tired and a tiny bit dizzy I was okay, so I decided to run to the store. I made it through shopping just fine and was feeling a little proud of myself for being so industrious that day, until in the car on the way home my vision started blurring. Fortunately I was only about 3 blocks from home when it happened and there wasn't much traffic; if the circumstances had been any different I would have pulled over right away until my brain cleared up. I could see my surroundings just fine, but it was like my brain couldn't quite process the images properly. I think habit and instinct took over and I made it the last few blocks home just fine, but as I had to squint to distinguish between the green traffic lights and the red car lights in front of me, it was painfully clear that I should not be allowed to drive when I am like this. Yet, I know of no doctor or government agency that would prohibit it--I'm sure I could pass a driving test just fine most days. But realistically, there are probably at least 2 days out of every week where I know perfectly well I am not well enough to be trusted with a vehicle, or a heated stove, or a lighted candle, or an unchaperoned bath or shower.

This last week, I have been really struggling over what to do with this. My husband is an enormous help of course, but when he works 2 jobs and a 50-60hr work week there is a large majority of time when I am on my own, and even when he is home there is only so much he can do without running himself into the ground. Many days lately I have wished for a full-time caretaker--someone who will cook for me when I can't stand long enough to prepare food (or don't have the mental acuity to be safe around heated objects) and do the dishes so they don't just pile up on the table until I have a day when I'm energetic enough load the dishwasher. But of course just when I start thinking I can't possibly be expected to take care of myself right now, I will have a good day again. I will muster the energy to wash dishes and clean house and even go to work for a couple hours. We will have our small group over and I will spend the evening trying to remember what "normal" people's lives look like and I will realize that my sickness is no worse than what many others deal with, it's just a bit more unique perhaps. This feeling will last a day or two, until another day comes when I almost break another toe because I can't see the chair in front of me, or I knock over the knife block in the kitchen and realize that a few inches difference could have caused really serious injuries, and then I'm back to wondering how I can be allowed to live by myself.

There's really no such thing as a "day in the life" of a Chronic Lyme sufferer; every day is different and brings brand new complications and epiphanies.