Yesterday started out with the rare but dreaded "Brain Fog". Laying in bed in the morning, I could feel it rolling in. If you do not understand what Brain Fog is like, let me explain. Imagine, for a second, taking a hose, attaching it to your head and filling it with water. As you fill it up, your head gets heavy. Things seem to slow down and move in slow motion. It isn't so much pain as much as it is annoying. It feels as though you have a pumpkin on your head, like you are one giant bobble head. Or at least for me, that is what it is like.
I have been here before. It is rare, but it usually comes after days where I may have pushed it too far. And Saturday I had an event, so it is safe to say, I pushed it. Truth is, I wouldn't have it any other way. I refuse to slow down anymore than I have to. And trust me, there are times where my body forces me to slow down. Most people don't understand. It is easy to say, "Amy, slow down" or "Amy, it's not worth it". But not when you are the one living with it. I accept that my life will never be the same. I agree that there are things I cannot do. Running another Mud Run is out. White Water Rafting is out. And, against my will, doing my own stunts as a ninja is definitely out. But everyday things like work, are not out. In fact, they are what keep me going. I have to keep pushing through. I like pushing myself. As long as I am pushing myself, I am proving that I haven't given up.
But there are times where I have to listen to my body. And days like yesterday serve as a reminder. Pushing myself can be rewarding. I am able to do things I wasn't able to do 2 years ago. I have come a long way in my recovery. Most days I am doing great. Yesterday morning, I was not. So I took it easy. I moved slowly and tried to relax. I tried not to focus on what I couldn't do and more on what I could do. I did have a moment of tears. I was frustrated but Jason quickly reminded me that I was alive and able to have our morning coffee together and that is a huge blessing. He always knows exactly what to say to me to help ease my frustrations and put things into perspective. And after some meds and relaxing, I was up and at em!
Now here are my blessings. Jason and Niko decided they needed some "Dude Time" so they hit he golf course. Kylie and I decided that with the boys gone we were going to shop. We were shopping for decor for Jason and I's upcoming wedding when it hit me. As Kylie and I were rocking out to her Big Time Rush CD, belting out one of the songs I realized I was happy. Not just "having a good time happy" but down to my soul happy. The blessing in living with Chiari is that the little things like belting out boy band songs with your daughter mean the world to you. Every thing you can do, matters. The blessing in living with Chiari is that you appreciate each and every good moment much more. So yesterday, was one of the best days I have had in awhile. And it all started out with a morning filled with pain. But because of that pain, I was able to appreciate the rest of the day so much more. I might have missed the beauty in an ordinary day had it not been for Chiari. And for that, I am blessed and grateful to have Chiari.
My question to you is simple. What are you missing? What did you take for granted today? My guess is that there were little things you may have missed. I am guilty of that too at times. But when you are faced with a condition that has no cure you can either allow it to bring you down or you can use it to see the beauty in all the areas of your life.
So to my Chiari friends who are in pain, know this. I understand your pain. I understand your frustrations and your fears. My heart aches for those of you who suffer daily. You are not alone. We are in this together. I will keep searching for the "Little Wins" in my life so that I can keep fighting for a cure. I hope in some way, today you will find a handful of "Little Wins". Because if you stop looking for them, Chiari will always win. Chairi may win at times, but it will never break my spirit. And I hope it never breaks yours.
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