My fibromyalgia-related pain typically hangs out around a 3 on a 10-point scale. It's there, it's annoying, but it doesn't affect my ability to function. My cognitive ability and anxiety are typically the most affected as I struggle with memory, finding the right words and dealing with brain fog. However, there are times when I am reminded that fibro pain isn't just brought on by over-doing it, that it's also brought on by stress.
This weekend, I was reminded of that very thing when seemingly out of nowhere, Jaxson had three episodes we believe to be seizures. I was on high alert on Saturday after I witnessed one of the episodes, but I was so focused on watching Jaxson that I didn't pay attention to anything going on with me. Jeffrey was behaving amazingly well and spent some time outside with his friends, which was really helpful.
Then came Sunday. I woke up with a headache and my stomach in knots. Not overly nauseous, just queasy in the pit of my stomach. My body ached. Initially, I thought it was because on Friday evening, I went to Jaxson's school to help set up for the craft show they had on Saturday. Moving tables, lifting baskets, on my feet for a few hours. Stands to reason this could have impacted how I felt, and it may have been a contributing factor. I took a bath Sunday morning and rested all day. The time change always gets me, so I was pretty sleepy all day anyway.
I was hopeful that today would be better, but it isn't. My stomach is still in knots. My back aches. My hands are a little swollen and my fingers ache. As I type this I question what I was thinking when I started, but sometimes, getting everything out is more important than how my fingers might feel after I'm done. This is important to me, because I know that I'm not alone in this instance. I have many friends who are also fibro warriors as well as Kabuki moms. And it's important that we all band together and realize we are not alone, and we are not crazy.
The thing is, it's not just the seizures, which are new. The only seizures he's had before were febrile, and he had a one-off seizure several years ago. Nothing since then. That this is popping up now normally would just be typical additional stress, but there's been so much going on with Jaxson that my body finally said I had to stop. Over the summer we discovered that his bladder is incontinent and we were going to attempt a medicine to help him, but because he doesn't void all the way, that meant we'd also have to cath him. I did it once at home, and it was traumatizing for both of us, so we decided that right now isn't the time to start this. His Chiari may be causing sleep apnea, and he has obstructive sleep apnea as well. The obstructive part should be fixed next Friday when he has his tonsils and adenoids out, but then he will have to have another sleep study to see how bad his sleep apnea actually is. We're supposed to do that in January and follow up with neurosurgery in February. We will also have to follow up with craniofacial clinic around that time to determine when his VPD repair can take place (there's a gap in the back of his throat where extra air moves out when he talks). In December, he will have a heart echo and we will learn if he is due to have his mechanical mitral valve replaced. Plus trying to keep up on therapies and avoid him missing too much school for appointments and illnesses.
It's a lot. Having a child with special needs, no matter what those needs are, is a lot. We are fond of saying that the Kabuki life is not for the faint of heart, because it truly isn't. It takes a strong backbone, a strong sense of trusting your gut and being willing to open your mouth when something is amiss. It takes a lot of support from friends and family. And even with that, it takes a toll on the body. And when you have a chronic pain disorder, all of the stresses can add up to make a toxic mess.
One thing I'm still trying to learn is how to pace myself. How to listen to my body and adjust what I have to do during the day to make sure I not only accomplish things that need done, but also don't kill myself in the process. I'm learning that it's okay if I don't clean my house every day, if I stop for a few minutes and rest. It's not easy to look around my cluttered house and understand that today is not the day to clean it. But I'm learning. And that's just as important as recognition.
Taking baby steps is a common thing for me. I pick one task to do and get it done. Then see how I feel and if I can do more or if I need a break. Trying to learn the signs my body is giving me is hard, and even though I've been doing it for almost 2 years, there are still times I am unsure of how my body will react. Fibromyalgia is a cold, mean-spirited disease. It does not care what is going on in your life, only that it wants to show up at the worst possible times.
One thing I hope other moms can learn from this post is to stop and listen. If you're feeling overly anxious or having a bad pain day, stop and listen to your body. Do what you must to get through the day, but don't expect to be able to do it all. It's okay if your house is a mess. It's okay if the dishes and laundry are piled up. It's okay if you have to put something off until tomorrow. It's okay to not be okay. And it's okay to talk about it, to ask for help, to lean on someone. I certainly wouldn't be where I am if I was left to fend for myself. I have my amazing husband, my family and friends who are there to support me when I need it the most. I will be forever grateful to my village, my people. So please, don't think you have to be Wonder Woman to be a good mom or to be a good partner. You don't! No one is perfect, and no one should expect you to be perfect either. Trust yourself. Listen to your body. When you do these things, while it's hard to accept and sometimes even harder to do, your mental and physical health will be better for it.
I'll end with my quote, as it's especially fitting today.
"Life is not the way it's supposed to be, it is the way it is. It's how you cope with it that makes the difference." ~Unknown
