Whew, I had to take a minute to catch my breath, and back away from the brink of a nervous breakdown. Last winter and spring kicked my butt. Kids were in crisis, I was driving 4-6 hours every weekday to bring kids where they all needed to be because of said crises, I had to quit the best job in the world, my health suffered because of the extreme stress I was under...whew.
But I’m back! The summer gave us some reprieve from crises. The kids had some down time, some time to heal and relax. Things smoothed out. I think it was our best summer yet. Since getting IV Ozone treatment last fall, Ben and Jonah’s health has greatly improved. We haven’t had a rage in months. Rages used to happen multiple times a DAY. EVERY day. Now, it’s been months since we’ve had a full-blown rage. I live with PTSD because of all the years of rages, so I subconsciously wait for the next rage to hit, but so far so good. That in and of itself is the most monumental improvement— more than I could ever wish for or ever expected. The rages were what fueled my search to find the kids help, all those years. If you haven’t lived with rages, there’s just no way to explain the harm they do to an entire family. On a Facebook post from a fellow PANDAS parent, a mom used the words “horrific and surreal” to describe a PANDAS flare and the ensuing rages that came with it. There’s no better way to describe this illness. Horrific. Surreal. At times I can’t even believe this is my life.
But things have a way of ebbing and flowing, waxing and waning. Light comes back to our days. We’re in a light spot right now. We still have hiccups occasionally. Flares come and go and surprise us and challenge us. But overall, everyone is doing well.
Which makes me very uncomfortable.
I’m used to adrenaline pumping, all day, all night. I’m used to feeling the fight or flight response many many times each day. I’m used to stress. Constant, intense, chronic stress. So when it isn’t there, I feel uncomfortable. And I try to fill that hole that stress left with something else. I try to stay ultra-busy. I go back to my part time job. I take on responsibilities I don’t need to take on. I overdo life. And then I crash.
My body has informed me that I am not able to do all the things I used to do, without consequence. My sweet body put her foot down these past few months and said, “Nope. We’re not going to live this way.” I tried to argue with her. I tried to ignore her and convince her that I can still do it all. I can still OVERdo it all, I should say. That I can give and give and give and I really don’t need anything for myself, because life is supposed to be hard and challenging and never easy and comfortable.
When I ignored my body because my children were in crisis, my body silently revolted. My thyroid went on strike and my Hashimoto’s flared. My Epstein Barr levels soared, all of which sent me into a tailspin of extreme fatigue. Fatigue completely freaks me out, because I get so scared that this will be the time when I won’t bounce back. This will be the time when I’m incapacitated forever. This will be the time I pushed my body too far.
My body has been giving me signals for the past decade, but either I didn’t recognize the signals, or the doctors I had at the time didn’t. A couple years ago, my gynecologist met me in her office with a long face, and said that if I wanted to have more babies, she would feel sad for me. Because my ovaries were done being ovarian. They had retired. They were on strike. “Four preemies is ENOUGH!” They said.
I went to get my hormones from Walgreens after my doctor handed me that news, and the pharmacist (who knows me so well because I pick up meds almost every single day for someone in the family) remarked that this was a new medication for me, and asked if I had any questions. I said no, no questions. I told my pharmacist friend that I had just found out that my ovaries were dead, so you know, I was going home to have an Ovarian Retirement Party with wine and ice cream. We both laughed. Because really? Really, whose ovaries just pass out at 41? Who goes into menopause at 39? Who has FOUR preemies? Who gets Lyme, Erlichia, Anaplasmosis, Hashimotos, Epstein Barr, scoliosis and more? Whose got four kids with special needs? Really, who?
Well, this girl I guess. You just have to see the funny.
A friend recently told me I shouldn’t say my ovaries are “dead.” But my ovaries and I have a great relationship, and this is our inside joke. I am so grateful to my body for giving me my four beautiful children. I am so proud that my ovaries hung on, by some miracle, to make me a mama. I’m totally fine with being in Ovarian Retirement, and when I say my ovaries are dead, it’s a term of endearment. They know I love them. We agree that this is the craziest life, and my ovaries and I think it’s hilarious that I have gone through everything I have, and I’m still here, with the big, crazy, beautiful life I have.
Luckily now I have a team of doctors who know what to watch for when my body goes on the fritz. They know how to pull me back. I remember twice this past summer when I was struck with awe because I realized that my body felt comfortable. Two times, I didn’t have any pain anywhere. Not inside, or outside. Not in my muscles or joints or intestines or brain, not anywhere! One of these times, Alex and I were driving together and I said out loud how weird it was because at that one brief moment, my body was comfortable! That never happens when you have chronic pain. The pain-free state lasted only moments, but it was amazing and I was grateful.
One of my soul sistas told me a few months ago that she was focusing on Surrender. I said I have a hard time with that word. She explained that she is not surrendering, as in giving up the fight and putting a stop to advocating for her family, but that she is surrendering to the place she is in life. She is not fighting what life is bringing her right now. She is trying to be ok with the way life is, even though it’s not what she expected and not what she wants in many ways.
My soul sista is one of the wisest, most intuitive and inspirational people I know, so I knew that she was telling me something I needed to hear at that moment, even if the “why” or “how” of it didn’t make sense to me then. I made a mental note to explore Surrender.
I sat with Surrender for a few months. It kept popping back into my heart. I sat with Surrender, tasting the feeling of it in my mouth, and pulling it around my shoulders like a warm blanket. I tried Surrender on. It slowly started making sense to me.
Recently, I had a day full of physical pain. Most of my days are full of pain, but this day was particularly intense. Fatigue and pain gripped me. Normally I don’t realize it, but I fight my body. I panic. I push against the exhaustion, I grit my teeth against the pain. I try to shove it down and do what I need to do and ignore the pain. I worry that if I recognize the pain and fatigue, I won’t be able to go on. I will have to listen to it and deal with it and I won’t be able to do all the things I want and need to do in my busy life full of beautiful kids.
The panic crept in. I tried to push away the pain in my body. Then I heard, “surrender...”
I don’t know how to surrender, I argued. What does that even mean- surrender??
“Surrender.”
I thought Fine. I’d give it a try. So I took a deep breath. I acknowledged my pain and fatigue. I sat in the car on my way to pick up a boy from a thing and I fully felt my pain. I leaned into it and breathed. I recognized the anguish my body was in. I thought it would break me. But instead, something beautiful happened.
I was shocked. It felt like my breath wrapped around the pain, and something enveloped the entire ‘me.’ I felt like I was fully unified, totally one, perfectly together. The pain and my body were coexisting, not fighting. The pain wasn’t an entity of its own, it was just part of me that I could work within. The pain didn’t stop me from doing what I needed to do. By leaning into it, recognizing it, and surrendering to it, I was able to keep moving forward. I was able to keep picking up and dropping off kiddos at activities, walk the dogs, make dinner, yell at kids about showering...all the things I had to do.
I surrendered and somehow it made me stronger.
I have been pondering how we always hear what we need to, at exactly the right time. Things come into our lives at the perfect time, even if we can’t see the meaning or perfection. My soul sista planted the seed of Surrender for me months ago, and I knew I was meant to digest it a bit in order for it to make sense to me. Isn’t it wonderful that teachers are put in our paths at the perfect time?
I’m practicing Surrender. I usually forget about it and try to muscle through the pain, exhaustion, fear about rages returning, anxiety about kids’ flares...It is not natural for me to Surrender. But sometimes I remember to work on it, and when I do, I feel an ease. Not that life becomes easy, but that I am able to function with more ease, more comfort, within the challenges life throws at me.
When you feel pain, fatigue, desperation, darkness...just breathe. Lean into it. Realize that you may not be able to change it right now. As scary as it is, accept it. It won’t break you, I promise. Surrender, just for that moment. Take a deep breath and know that you can wrap yourself in Surrender and still have the strength to carry on.
XO
