Fatigue is Busting Out All Over!
A month has skittered by since I've last written. I have had nothing to say.
No, that's not true. But my brain is just not working well and I have no left-over energy after teaching all week. My name is Lisa and I'm chronically fatigued. There, I've said it.
The irony is that I'm a pretty good teacher; I can summon up my energy for the classroom. Last year, at one very tired point, I tried to drink caffeinated coffee (caffeine and I do not get along.) Oh, I felt myself to be a witch! I worked so hard to refrain from being mean. That took even more energy!
Another irony is that, after resting all day Saturday, I can hop on my bicycle on Sunday. If I'm with a friend and I have a Gu Energy Gel every hour, I can bicycle 30 miles at an adequate pace. Or I can bicycle 14 miles inside of an hour. I'm free, I'm flying, I'm soaking in the density of the green leaves and the blueness of the sky. But I'm also counting the miles until the ride is done. I'm not enjoying it the way I used to.
Today, I had an hour to ride. Couldn't eat much for breakfast. I raced for the first half hour, felt my heart pounding. And then, I lost my energy. Had the half hour ride back. The culprit is my odometer--with cadence. I admit I'm a little obsessed with tracking myself and I'm very competitive with myself. I could've stopped on the side of the bike path and taken a snooze. Needless to say, my time was not as good as it was last week.
Sigh. I realize that I must sigh a zillion times a day. I wonder if it's a symptom of babesia for me. I do think my sighing is a way to get more air. I have an appointment with my Lyme doctor in a couple of weeks to revisit my treatment (and diagnoses.) This Lyme stuff is pretty sneaky, Sis.
My daughter shows signs of Lyme and co. as well. She was always considered to be the "well child." Now, I stress about her, although she is in no way even 10% as ill as my son ever was. I can look back and see all the signs--her sweaty little infant body, her fever at 2 weeks old (and hospitalization at none other than Westchester Medical Center where a spinal tap was conducted.) If they had any proof of Lyme then, it was never communicated to us. If they even performed a Lyme test. An Igenex test a year ago (positive by CDC standards) and a very recent zytoscan has given us all kinds of necessary information about her.
The GOOD news is that my son, who was terribly sick with PANDAS and Lyme for 4-1/2 years, is now back in school full time. What's more? He's getting As in math! Math, of all subjects!
Wonder of wonders, miracle of miracles.
He LOVES school. LOVES being with his friends. Enjoys learning and likes all his teachers. His math teacher has emailed me a few times to share how well he's doing...and she pulled him out of a class soon after he returned to school to show him the result of his first quiz there--which was outstanding. We really appreciate his math teacher!
Even four months ago, he struggled mightily with math.
But, my son fatigues by the end of the day. His brain is fried. Yep, I know how he feels nowadays. I've requested that he not receive homework and the school has complied. When he is ready, he will want to do it. I probably have one of the only children in town who actually WANTS to go to school. He WANTS to be a great student. He is proud of having kids ask him how to do math calculations. I know that when he can handle it, he will WANT to do homework! He wants very much to be a "regular kid" and do what everyone else is doing.
He talks about studying and working hard in high school, so he can get good grades, attend a good college and someday become a doctor. I just want him to be enabled, to have choices in life. It's what all parents long for, but it's something we parents of kids with PANDAS and Lyme don't take for granted. Our children may not be empowered. We might not have college funds anymore after using them for medical expenses. Our children's futures are not guaranteed. But, neither are they guaranteed to be negative. At any point in our lives, when we put in the work, good things can happen.
Right now, my own fatigue is definitely a deterrent. For weeks, maybe months, when home, I've just wanted to lie on my bed and rest. When I'm driving somewhere, I feel this heavy tiredness, like a thick fur coat, settle over me. If I'm walking around, I feel dizzy. It's like I've checked out of my day. My husband has calm, interesting conversations with the kids while I mope about. Well, not exactly mope. But I just don't have the energy for all that. I want to cuddle them, talk to them, but I also just want to be alone.
Leave me alone, leave me alone. I wonder how many people with Lyme feel that way? I clean a little, then lie down. Do some laundry, then lie down. Talk to neighbors or friends, then lie down.
I had mononucleosis when I was 20; I know what it's like to sleep through day/night/day/night. I'm in no way as bad as that. I can push myself to do just about anything. When I was first pregnant with my son, I was nauseated and tired all the time. I'm in better shape than that. Hey, gotta keep it in perspective. But it's depressing and debilitating anyway. And it's not going away.
I have projects in mind that I'd like to work on, goals I want to accomplish. My work is not done, in school and at home in terms of PANDAS awareness. I'm accomplishing a lot at my job. I promise to do more at home. Someday, I'll write those novels I've planned. Someday.
Last night, I stepped out of the house into our first summer evening of the year. My son was sleeping over the house of a friend; he and his friends had biked back so that he could pick up his things. Two of his friends had bikes attached to wagons or carts--these kids are an interesting, creative bunch. As they bicycled away, I breathed in the cooler air, gazed at the expanse of bluish black sky, the spindly tops of trees, and felt small in this big world.There is so much more life ahead for all of us. There are good days ahead.
Everyone has their own path, their own time frame. For so long, when reading about other people suffering from Lyme, I told myself, "I don't have it badly. I have nothing to complain about. I can walk, bicycle, work." But I do have Lyme. And I feel it daily. As do both of my children. Maybe it's OK, once in a while, to acknowledge that sometimes it's too much for me. My daughter was 6 when our descent into PANDAS hell began; she witnessed it all. My strong drummer-girl, who has compassion for so many people with disabilities, is not totally unscathed. None of us are.
My son's journey into recovery is enough to give all of us hope. There was a time that I didn't think he'd make it. At 8, he was suddenly suicidal. At 11, he didn't want to live. And now, nothing will stop him. Does he still have symptoms? Hell, yes. Is he still on medicines? Absolutely. We will do whatever it takes to get him through. And after all our hard work, and that of the doctors, he's doing well. If it can happen for him, it can happen for anyone. Provided that medical treatment is accessible.
And that's why I continue to write. To let whomever stumbles upon my website know that it's possible to heal from these medical diseases. To let the world know that these illnesses exist and are not psychiatric. To confirm to myself that there is a greater meaning in life.
*****
One very special person whom I met through the PANDAS/Lyme community is Melissa Kerins. Despite dealing with her own challenges and those of her three children, she has been very active in trying to free Elizabeth Wray from the clutches of Boston Children's Hospital. For many months of Justina Pelletier's captivity at BCH, Melissa organized peaceful marches. She has done so much for our children. Now, it's our turn to give back. Melissa has been diagnosed with cancer. Please help, if you can, through prayer, supportive words or donations.
Saturday, June 21, 2014 at 10:07PM
Reader Comments (2)
Hi, Lisa! I resemble this. :) From one PANS/Lyme Mom to another, my take on all this fatigue business is a cumulative effect of lme, methylation issues and adrenal fatigue due to chronic stress of being PANS Moms. We ran on fight-or-flight adrenaline for years when it was bad, now that it's better, our bodies are letting it all catch up with us. Addressing methylation issues with 23andme data is helping.
Thanks for keepin it real, Lisa.
Kristen
I really loved this post (don't love that you are fatigued, of course!)
Also a PANS/ Lyme Mom,
this was written beautifully.