The older I get, the more I am made constantly aware of the increasing burden Fibromyalgia places on my life. The ever-present pain, the chronic fatigue, the migraines… these are all things I’ve become accustomed to dealing with and I’ve learned to just accept that I’m either going to push through it or not. Some days are better than others. The thing that really hits me when I’m knocked on my face (not literally) is that I’m only 28 years old. My body works against me … more and more. But even that isn’t what bothers me the most.
The other day I was on the phone with my husband and before we hung up, as usual, he asked me if there was anything I wanted to tell him before we disconnected. When he’s offshore, we only talk twice a day because that’s all the time he has so we have to make every moment count. I told him there actually was something I wanted to tell him but I couldn’t remember what it was. That happens so often now… and it’s so frustrating. If I don’t write it down, it’s lost forever in a sea of mental fog.
When he called after his shift before going to bed, he asked me if I ever remembered what it was I wanted to tell him. Of course, I hadn’t. Before I even realized how upset that made me, tears started streaming down my face. I didn’t want our bedtime conversation to be a somber one so I didn’t mention that to Barry… but I got so emotional as I imagined what my future might hold. I just kept sniffling and complaining that my nose wouldn’t stop running — but in reality, I couldn’t stop crying. As I type these words, my eyes are already welling up which reflects how terrifying it is to me. Am I going to end up being a burden to my family — to my husband — one day soon?
I hate dwelling on things I can’t change and I don’t like feeling like I’m throwing myself a never-ending pity party so I do what I do best — suffer in silence… but that’s starting to weigh on me and I feel so alone in this battle. A battle that over the last few months, I’ve started to feel like I’m losing for the first time in my life and it’s scary. I hate when people try to tell me, “Oh that’s normal… I do that sometimes!” I feel like no one understands the extent to which this is affecting me. It’s NOT normal for me to forget literally EVERYTHING.
You know how you walk in the door and you put your keys down and then later you can’t remember where you put them? Imagine doing that EVERY time you put ANYTHING down. You know how you’ll walk into a room and forget what you went in there for or going into a store and not being able to remember what you needed to get? Imagine doing that almost EVERY time you start to do something. I went to Walmart specifically to get Avalyn’s lunch for her field trip. I walked in the store and couldn’t remember what I went there for. I grabbed a few things… all the while trying to remember and I couldn’t. I felt helpless, and I finally gave up.
I checked out… went home. Avalyn came running out to see what I had gotten for her to eat during the field trip the next day and my heart dropped. :( I was so embarrassed… and I had to go back again. And this kind of thing happens ALL the time. It’s gotten to the point where I can’t do ANYTHING without a list. Simple things. Yet I try anyway… because not being able to is so frustratingly disappointing. But then when I fail despite my best attempts, it’s spirit-crushing and I just want to cry. I’ll think, “I don’t need to write that down. Surely I can’t forget something that important.” Yet I do. Time and time again. Each time I tell myself to STOP believing I’ll remember but each time I just WANT so badly for my mind to not fail me.
It breaks my heart to think of my husband 20 years from now trying to take care of me and keep me in order when I can’t get around well because of the pain, stiffness, and the other physical challenges that come with being SO exhausted no matter how much rest I get … or not being able to keep track of things on my own because my mind always feels as though I just got ripped out of a deep sleep. Tears, tears, and more tears. I just want to feel normal and I don’t want to have to live with the fear that comes from knowing how much worse it’s gotten in just the last couple of years — and the torment of wondering what 10 more is going to do to me.
For the entire month of November, I’m participating in National Blog Posting Month. Read more —>