Major landmark in my Lyme disease journey today. I applied for a job. I haven’t worked for a year and a half, I couldn’t. Last spring and summer I could hardly have a conversation. I took at least one 2 hour long nap everyday, often two naps. My doctor forbid me from going to stores like Target and Bed Bath & Beyond because I was so sensitive to light, sound and smells. I couldn’t drive myself anywhere, I could hardly even ride in a car. Just being awake and fed was an accomplishment enough to call a day a good day.
Eleven months later I had improved enough to take on the challenge of Paint May Lyme Green 2010 and producing the Lyme disease awareness PSAs. It was a lot, no, a TON of work but I managed because I was working on the schedule that my body set. Time for sleeping in, naps, pills, special meals, insomnia, days spent in bed, bathroom breaks, Epsom salt baths, infarared saunas, time under the O2 compressor, reverse lattes, doctor’s appointments. Being home and answerable to no one but myself, I managed to be very productive and successful all while wearing my pajamas. The honest picture of the behind the scenes lead up to Paint May Lyme Green would be me in my pajamas behind the computer, usually unshowered, and looking like hell.
Six months and a really rough summer later, I sit here feeling almost healthy. My brain works again. My body is starting to wake up. I’ve gained weight, energy and desire. Until now staying home was all I could do, I didn’t want anything more. More wasn’t even an option. Now I have the desire to do things. I’ve started having dreams about running and skiing, things I use to love but haven’t missed until recently. My body is still weak but my brain is raring to go.
Until two months ago getting me out of bed before 9:00 am was a challenge. I preferred to sleep until 10 or 10:30. My insomnia would keep me up half the night and I couldn’t function until late in the morning. Now I’m waking up at 7:00 ready to get up. The insomnia has lessened and most days I don’t feel the need to take a nap.
I don’t want to stay home anymore, it’s lonely. I want to have some interaction with other people. Before, the thought of any kind of social life was so overwhelming I didn’t even think about it.
I don’t feel like staying home is healthy for me anymore. The huge shell that Lyme disease has housed (trapped) me in for the past two plus years has shrunk so much that I no longer fit. I have to admit that after all this time, I am comfortable here and I’m not sure that I entirely like the idea of getting booted from the small, safe world I have created for myself.
Stepping back out into the “real” world scares the crap out of me. What if I’m not ready, what if I relapse, what if people don’t understand some of the needs that I still have?
If I listen to my body, it tells me I am ready. If I look at my bank account it tells me, you’d better be ready.
Today I interviewed for two part-time jobs at Alpine Meadows Ski Resort. An industry I know like the back of my hand. Comfortable. This is the same Resort that my husband works for. Support and a chauffeur). I told them I can only work 2-3 days a week. I also told them that I have Lyme. Both departments offered me a job. Acceptance. Now it is up to me to decide which job is more suitable to my needs.
Last summer, 115 pounds, SICK, housebound, cognitive malfunction
September 2010, 130 pounds, feeling healthy and functioning well
Actress Candice Accola stared in two of the Lyme disease PSAs we made in May. She was one of the main forces behind the project. She rallied her celebrity friends to join her in the project and our estimated two PSAs expanded into 24!
