Last week, as I climbed into bed and turned out the lights, I experienced something very strange: I realized I was looking forward to my tomorrow. In that moment, it struck me that after ten years of PANS, I couldn’t recall the last time I was truly excited about waking up for another day.
It’s not that I haven’t looked forward to anything in life for all these years—there have been plenty of better times when I’ve been excited about a particular event or a single aspect of a day. But rarely, if ever, have I looked forward to simply living.
Much of the time, I don’t live, so much as I merely survive. I’ve achieved great things in spite of my illness, but my victories are always shrouded in a cloud of depression and anxieties—I may do “normal” things, but no one knows how many obstacles I face in the process. In good times, PANS trails behind me like a shadow, reminding me that any day, it could come back and envelop me—which causes an unconscious sense of dread for each day to come.
But for a few days last week, that shadow was gone. While I still had a few tics here and there (and ongoing food challenges), I otherwise didn’t notice my symptoms at all. I had a mental clarity that I hadn’t experienced in at least a decade—no more depression, no more anxiety, no more ADHD, no more cognitive problems, no more brain fog—just clear thinking and happiness. It felt like waking up from a ten-year slumber.
Amazingly, it just so happens that this week marks the six-month anniversary of my third high-dose IVIG. I’ve always been told that it’s usually 4-6 months (and sometimes up to a year) before the full effects of IVIG kick in, so it seems that I’m right on target.
Unfortunately, the “awakening” I experienced a few days ago didn’t last: I’ve since had another herx reaction from my Lyme treatments, which has brought back the brain fog and depression, along with feeling like I have a bad case of the flu. It’s terribly painful to have had a taste of normalcy and good health, only to be dragged back into the mud of PANS and Lyme.
Nevertheless, I’m trying to look on the bright side and realize that herxing, by definition, means the Lyme bacteria are dying, and I’m getting better. Moreover, having experienced this latest bout of remission—the first time I’ve looked forward to life in a decade—gives me great hope for the future. If I can have five days of remission like that, then why should I not believe I can someday be that healthy all the time?
Now I look forward to tomorrow because I have reason to believe and hope that I’m on my way towards forever beating PANS and Lyme.
Praying for your recovery!
Thanks, Heather!
I so admire your spirit and agree that one day you will definitely have that feeling of normalcy and clarity all the time (or at least most of the time, like many people :))!
God bless your journey to recovery, Dreaming Panda! I am so sorry that you got a taste of ambrosia and then the feast seemed to have evaporated. But one day, things will be better, and you’ll get to eat that hard-earned feast!
Herxes aren’t fun, but, as you said, they mean the spirochetes are dying off. FYI, some Lymies herx every 4 weeks. I was a 2-weeker one, I think, in fall 2015.
I can’t wait for the day I look forward to tomorrow, and not for a counseling session, LOL! 🙂
Yay Pansy, we both finally learned how to spell “spirochetes”! I remember back in fall 2015 when we both spelled it “spirokeets”! Old memories…lol. I’m a 2-weeker now actually.
You are so inspiring! Especially after all you are going though & have been through! You give others hope & help allay fears. There is a future beyond PANDAS, PANS & Lyme. We all just have to get through the journey . . .