Life-long struggle with my brain and body
I used to be an energetic and athletic kid. I played soccer, swam, raced with the kids in the neighborhood, rode bikes, played football, anything active, I did it. Then pre-puberty set in and I started getting auras and migraine headaches. I was still playing sports, but I whittled them down to two: soccer and springboard diving. When puberty kicked in, I still kept my sports but I was useless for portions of the month due to the massive pain I was in thanks to endometriosis. But, that is not what this is about.
I started getting migraine headaches shortly before I turned 10 years old. I called the auras a ‘blankness’ in my vision. I don’t believe I always got a headache even then, but I truly hated when these auras happened because I hated the way it made me feel so detached from the rest of the world. Even then I was starting to get stroke-like symptoms of numb face and hands, even my tongue would get into the mix. Those symptoms were always worse than the headaches, and the headaches were bad.
The doctors over the years have provided me with a plethora of medications to manage the headaches when all I ever wanted them to do was make the symptoms stop. I could never get a doctor to hear me when I would tell them I didn’t care about the headache pain, I just didn’t want to deal with the auras, the numb hands, and face, the brain fog, and all the other crap surrounding the migraines.
My mom once took me to a psychologist to learn biofeedback techniques to try to manage the blood flow when I would get the auras, and while I could generate heat between my hands quite well, it, too, never changed the frequency or severity of the auras or changed the length of time the numbness existed in my face or hands.
I am now approaching my fourth decade with these symptoms and the headaches have all but disappeared but the symptoms persist. Then just 4 weeks ago the symptoms took a new turn. I had read about other migraine sufferers having true stroke looking symptoms before, where their face drooped and they could not speak. Well, that, finally, happened to me. I had just finished a reasonably strenuous workout and was just grabbing my gear out of the locker in the gym when I felt weak and numb on my left side. No big deal. I have had that before. I sat down to wait it out, when I realized I couldn’t smile on my left side. I checked myself in the mirror, and sure enough, my face was drooping. I ran and got help. They called 911 and I got the gym manager to call my husband. Then within 5 minutes it resolved. But since this was new and still could have been a stroke, off to the emergency room I went.
Long story short, the doctors now, finally, are thinking I might have MS. So, I spent 4 decades trying to understand why I am different than my many migraine suffering friends. Why I couldn’t care less about the headache pain and why my symptoms don’t match everyone else. And now, I have to go have a lumbar puncture, and experience another killer headache, to find out that I might have something completely different.
Actually, I am kind of okay with that.
With a diagnosis, I can actually make a plan. Take some action, and, finally, know what I can and can’t do to manage my symptoms.
What does this have to do with my activity levels? Well, I spent the better part of two years trying to become a “runner” and failed miserably. I never reached a runner’s high. I always had issues with my legs wanting oxygen that my body wasn’t sharing with it. I tried and tried to stay active in my adult life and each year it became more and more difficult to do. I felt like my body was fighting me every step of the way. In fact, it just might be. So, I need to find ways I can work with my body to find activities that don’t cause my body to fight against the effort. That might mean that need to find a trainer who has worked with people like me before. Someone who is not going to “go for the burn” but is going to simply find the small wins.
I love activity. I just need to find something that doesn’t go so far as to set me back further for participating.
