Made by Courtney, age 2.
I lost a relationship to Lyme. As I’ve learned since, Lyme has ruined many relationships and marriages.
The year we met was wonderful. He was smart, funny, sweet, and kind. Best of all, he said “yes” to everything, from new foods to foreign films to travel. He taught me about sailing; I shared my love of cycling. Over a couple of years we grew close.
Then came the beginning of the end of us. When he won tickets to Paris and we arrived full of plans to explore La Ville Lumière, suddenly I was so tired that I didn’t couldn’t keep up. My customary joi de vivre was flagging along with my body. We thought it was jet lag or flu. Continue reading
Two things in particular sustain me: natural beauty and friends.
For a long time now, I’ve been in a place where viewing the lives of friends through the window of Facebook is incredibly painful. What’s wrong with me? Why can’t I just enjoy the happy happenings of others instead of being overcome by my own piercing grief, frustration, and regret?
I checked my page today and saw a lot of posts from folks, many of whom I have not seen since I got sick. They’re experiencing all kinds of major life events. Meanwhile I’m facing major limitations.
This morning when I woke up, I realized that I actually felt refreshed.
I had not endured a night of constant shifting trying to relieve body pain. Or of bolting up eyes wide open at one a.m. and then finding myself stuck awake with raging insomnia for four or five hours. And the thing that struck me most this morning was, I felt at peace.
Lyme disease can affect every part of your body, but many people don’t realize how hard it can hit the brain. For me, one of the biggest symptoms has been crushing anxiety.
I wasn’t particularly surprised; when you’re in constant pain, can’t work, can’t dress or cook or do your own grocery shopping, you lose your sense of self and the worrying escalates. Will I ever feel ok again? Will I ever do the things I used to do, will I be able to work? How am I going to survive financially?
My worrying became debilitating, full-blown anxiety. A therapist helped me deal with it, and medication took the edge off on many tough days.
Here’s a surprise: I had no idea that that the anxiety I struggled with isn’t just triggered by the stress of this chronic illness, but by actual physiological changes in the brain kicked off by Lyme and co-infections.
Actually, I’ve learned many people need a little help from me to truly see the pain.
Lyme is known as an “invisible” disease. That’s because oftentimes we look pretty good on the outside despite feeling myriad symptoms inside. And—unfortunately—many of us are darned good at keeping those symptoms invisible.
My own reasons include:
- I don’t want those around me to worry.
- I don’t want people to know how sick I really am because I’m afraid they’ll abandon me.
- I hate the thought of becoming that depressing person who is constantly complaining about how crummy he or she feels.
But I’ve come to see that a dose of reality is a good thing. When people understand the seriousness of this illness, they offer empathy and support.
Beyond that, we need others to know how serious chronic Lyme can become, so more people understand diagnosis and prevention—and stay well.