I always thought it would’ve been easier to deal with the weakness if that was how I felt all the time, with only minor fluctuations… But a roller coaster of difference between one day and the next was so frustrating and stressful. I never knew how I would be feeling! Never knew when I’d crash…
One day I could run (slowly), jump, climb stairs, navigate the monkey bars and climb the jungle gym at school. I could keep up with my friends, for the most part! (However, I never wanted to play tag because I was always the first one tagged and I couldn’t catch anyone after that). I could do my own hair, participate in gym class and play all the games. Then BOOM!!! Next thing I know, I felt like jelly…I could barely walk without feeling off balance, stairs seemed impossible, I couldn’t lift my arms over my head to brush my hair or put it in a ponytail… Run? Forget it! If someone bumped me when I was trying to walk, I didn’t have the strength to regain my balance and I’d fall. So, I tried to stay away from others…
I noticed when I was over exerting my muscles, they’d burn. And I’d get very shaky. Soon, my muscles seemed to give up completely and they’d feel like jelly! It was as if they went to sleep and I couldn’t wake them up. All of a sudden, my muscles were not able to do what they had just done hours earlier! I even felt nauseous.
Without the proper diagnosis until much later in my life, I was left confused much of the time. I did eventually figure out that once I got tired, and my muscles stopped working correctly, that it could take anywhere from a day to a week to feel good again! I never timed it so, there could’ve been longer periods than a week… I just know I’d wake up every morning praying I’d feel strong when i sat up and touched my feet to the ground…
When my muscles went to jelly, my hips would sway much more when I walked. My back would arch much more. (weak trunk muscles)
My knees would buckle and I’d fall.
My head felt heavy and my neck felt tired.
I would have trouble catching a good breath.
My heart would race as I tried so hard to push myself to do simple things like walk from the playground to the classroom. Or trying to get dressed and do my hair before school. I’d sweat from the extreme effort it took to do simple tasks.
Heat and humidity of hot Chicago summer days and shivering as I tried to stay warm on cold winter days drained my strength, too.
Ironically, sitting still for too long (like a long car ride, depleted my strength! So I had to rest more to get my strength back, but resting too much was bad for me, too. I couldn’t win.
Being sick stole my muscle strength, as well.
Now that I’m treated with albuterol, my fluctuations are nothing at all like they used to be. I can exercise, walk for miles, even run a 5K! See my earlier blog post about that triumph!)
Now when I finish doing something exhausting, I expect a slight decline in strength. But it’s nothing close to the extent I endured prior to treatment. So, I constantly push myself. I have a security blanket now. I feel I can accomplish almost anything 😊 I’ve come a really long way!