Staying grounded while recovering from Lyme disease
Photo: LifeLoveLyme
While I was visiting family in northern New Jersey a few days ago, a snow storm blasted across the Northeast. Nemo left eight inches of fluffy stuff covering everything in sight.
And overnight, my sister’s household slowed down to my speed. Lyme speed.
Photo: LifeLoveLyme
Recently, I logged on and saw a posting on my Yahoo lyme support group from Rebecca of Hampton, Virginia. She had written a list that touched us all, and I’d like to share her thoughts with you.
I am learning…
To chill out.
To love myself not just on good days, but bad days, too.
To reach out to others.
To let go of my need to control.
That friends are treasures.
That hugs, kisses, and a little together time in a family go a long way.
***
That it’s OK to not be OK sometimes.
That I’m never alone.
That every moment of every day is a gift.
That none of us deserve this and we matter in a very special way.
That this disease is ugly—but I’m not.
Photo: LifeLoveLyme
Someone special took me on a drive along the Chesapeake Bay in southern Maryland the other day, and we discovered a cozy place serving up key lime pie made from the tried-and-true recipe of the previous owner. The minute I saw the sign advertising pie in front of the old house-turned-coffee house, I knew I had to have some.
Sitting in the warm, inviting front room and savoring every bite of tart, creamy deliciousness and crumbly graham cracker crust was the perfect celebration of my first day without Lyme symptoms in five months.
It was definitely a bummer seeing all the things crossed out on my kitchen calendar.
I heard an excellent idea from a former Lyme patient who now makes her living helping others manage all the ins-and-outs of this disease. She suggests ditching pens for pencils when it comes to writing down calendar entries.
Because back when she was ill, she started noting social events and appointments in pencil. That way, she says, if she had to cancel something, she could erase it and move on. She didn’t have the stress of seeing her calendar filled with all the thing she crossed off because of Lyme.
That’s an idea we can all use as we move into 2013. In the past few days alone, I have had to miss the funeral of a friend’s mother, pass on my wonderful brother-in-law’s major birthday celebration four hours away in New Jersey, and cancel a reunion lunch with a dear family friend.
At least when I look at my kitchen calendar now, I’m not reminded of all that, and can look to the next week with a fresh outlook.
A job half done is better than not at all. Maybe I’ll get the rest of these wreaths and other holiday decorations put away by February first…
My brother was visiting recently from Manhattan. It seems to me he’s been checking up on me often now that my son has left for college, and I have to say the company is welcome.
One particular day, I was obsessing about all the things undone around the house, including how filthy the windows have become after several years of neglect.
I can’t afford the professional window cleaners I employed when circumstances were different. But I certainly don’t have the energy to wash more than 20 windows myself.
So I was feeling frustrated, angry, and stressed about my lack of energy—and lack of money, too.
Just wash one, my brother said. One a day, and you’ll be done in less than a month.
Credit: Lyme Chick
“You look great!”
Many days, I wince when someone says that to me. I want to shout in frustration “I FEEL AWFUL!” And when I try to explain, I want to hear “I believe you”—not “But really, you do look great!”
I’ve felt hurt because even those closest to me don’t see my suffering sometimes. But I’m realizing it’s hard for them to believe how awful lyme can be if I don’t clue them in. Especially when it comes to pain.
Not long ago, my longtime neighborhood book group got together for a potluck dinner. I was just getting to the point in my recovery where I could leave the house occasionally. So I said I’d love to come if I felt okay. Especially because they let me off the hook when it came to cooking a contribution for the table, which I knew I couldn’t manage.
Happily, I made it to the dinner. A few days later someone sent around a photo that included me. By the time I checked my email, a couple of others in the picture had piped up, making jokes about how the picture should have been photo-shopped…the usual chatter of people who hate photos of themselves.
I’m usually one of them. But I opened the file and had to admit I looked, well—great. Yes, great.
The thing is, I felt like hell on the inside.
When I was felled by Lyme, my college roommate Tracey said, “I know you don’t see it this way right now, but your Lyme battle is going to change your life in good ways, too.”
My immediate response was, “Yeah, right. Lyme is a nightmare.”
It’s easy to focus on the dark side.
But she’s right. Now that I’m a little better, I see that chronic illness definitely gives you perspective about what’s important.
Sure, I miss out on a lot of life. But what I can do, despite limitations, is somehow sweeter. Exhilarating, even.
Well, maybe just a little.
Today everyone at my office is getting ready for the holiday party. I can just see them all, arriving in the kitchen in a flurry to stuff the fridge with their pot-luck contributions for later this afternoon.
I talked to Sonya on the phone last night while she made bread pudding. Charlotte can always be counted on for a gourmet surprise. I, however, will not be there with my hot buffalo chicken dip complimented in years past. I’m into my third month of being unable to go to work.
I know I should avoid whining, but I’m going to embrace it and indulge in a little pity party. Then I’ll get on with my day. I decided to follow this approach after seeing a cancer patient interviewed on a t.v. talk show (yes, I watch talk shows these days, another lyme-inspired low). Continue reading
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