Thursday, August 18, 2011

Life's a Beach, Cont.

Ironically enough, right after I posted my last entry, I "wiped out". I passed out, hit my head, and ended up in the hospital for the rest of the night. Thankfully, besides the swelling, bruising, black eye, and ugly scratch on my face- no serious injury was done. 
Just as I am uniquely familiar with the ocean, I've had more than enough experience as a patient in the hospital. I've been to the doctor more than I've been to any parties. I can list off my lengthy list of medications faster than I could tell you the names of the characters on Jersey Shore (hate that show). And I've been told multiple times that I am pancreas model worthy. So, It does make it easier that I know what to expect and what to be prepared with. The machines, monitors, and needles don't phase me. It's usually the bedside manner or the repetitive questions about my disease that I struggle with the most. On this trip, I hadn't been in that much pain since my surgeries in 2008. The last thing I wanted to do was listen to any disbelief or controversy over "this fatigue disease". I'm grateful my doctors weren't clueless or rude. Yes, my parents raised me to say "sir" and "ma'am", even at 4 in the morning, I will still address you as such. (Really, one doctor once was severely offended by this!) I may be young, but I'm not completely reckless and niave...
Going to the hospital becomes extra stressful when you show up with a lengthy medical history. You can assume you already know more about your body than they do, but you hope for understanding doctors who can listen. We didn't need the ER  docs to figure out why, we just needed to make sure my brain wasn't as rattled as I was from the fall.
So no major injury, and I'm healing up just fine. Thank goodness for my amazing friends and my  boyfriend who were willing to just hang out and watch me recover all day yesterday.
And if that wasn't enough, I fell today. Again. This time, I think it was just because I lost my balance.. But I landed on my head. Again. Ugh. Frustrating. And SO. Very. Painful. but what can I do but move forward? 
For those of you reading with similar problems, this feeling is definitely relatable. Just keep going. Persistence is so importance. I'm learning it's okay to lean on those we need, but it's even more vital to have faith in yourself... even if your body is failing you. I'm more than ME/CFS and POTS. It's definitely unsettling to have these setbacks, but I know I can't stay down forever. I'm stronger than any crash or wipe-out. I've just gotta learn to ride these crazy waves in.

Tuesday, August 16, 2011

Life's a Beach.

I thought it looked pretty easy. I've always had a unique familiarity with the ocean. My parents have been taking me to the east coast every summer since I was six weeks old. I'm so thankful for our annual pilgrimage to the beach. The salty air, the cool ocean, the warm sand... I can't think of anything better. It's such a rejuvenating experience. My parents used to have to drag me out of the waves after hours and hours of swimming. But last summer, I decided to try surfing.
"Just relax, duuuude." Tito, my instructor, yawned. (Tito was just as comical as you could imagine him. Big belly, big beard.) Yeah, relax. While I'm strapped to this giant death trap, awkwardly trying to stay afloat despite the swelling waves beneath me. I cringed as I felt the tide build, and said a quick prayer to dodge any sandy face plants. "Here she comes!" I clung to the board as he threw me into the surf. In a brief moment of amazement and surprise of my success so far, I tried jumping to my feet. Tried, and failed. I slipped right off the board and into the crashing waves. I plunged into the cold water, driving my body into the rough sand. But the ocean wasn't done with me yet. Still attached at the ankle, this massive anchor was dragging me around like a fish on a lure. In fact, I think a dead fish might have looked more graceful out there than me. So there I was, making a complete fool of myself while my dad was catching it all on camera. I could see the local kids easily riding the waves as my head popped in and out of the foamy, salty water. Even though Tito had to pull me out like a rag doll and plop me back on the board, that wipe out did not stop me. Neither did the next one. Or the next. Or the one after. Or that other one... I had more sand-burns and water up-the-nose than I had peaceful rides, but I still consider surfing a success.
Our trip to the ocean this summer served as a checkpoint for me this year. Comparing myself to last year, before I got sick, I could think of endless disadvantages, changes, and missed opportunities because of this disease. I had plenty of time to think about those during my "crash", while I was in bed VERY sick after the first day of vacation. Talk about a wipe out. No one likes to throw up in a foreign toilet. But, I am so thankful for our trip this year! It gave me some much needed family time. I also had alone time to reflect and get away from it all. I enjoyed the sunshine and surf more than ever. While I couldn't ride any huge waves due to my burning and weak legs, I was able to truly relax by my family and soak up some rays. While I was kept awake because of the pain, I had the opportunity to watch the sunrise multiple mornings. I never really had taken the time to do that, and I know I certainly didn't appreciate it as much before. Now I did recover from my "wipe-out" after a while, and got to finish out our fantastic vacation. My parents are so awesome for always carrying on this tradition... despite any challenges or financial and life stresses.
I haven't blogged in a while, and my excuse is that I've really been trying to get prepared for this coming year- both mentally and physically. I am making great progress with my condition and learning how to manage it! My leg pain has drastically improved with the use of the LED light therapy bed and my new drug, Neurontin.
I have also been trying to build back more strength in my legs. I'm hopeful to run again in the future! I actually laced up my tennis shoes for the first time today since November 2010. What a magical feeling... I only put them on to go to the YMCA to do my first yoga class, but still! I had been doing yoga at home with a DVD, but it was much more exhausting to do it in a group setting. My favorite pose is my original "amoeba", just relaxing nicely sprawled out on the floor...
I am so so happy with my improvements. It does take a lot of self discipline and I have to make sacrifices. I will always stress the importance of my friends and family who support me and try to understand. I know the wipe-outs seem inevitable sometimes, but that one ride will make it all worth it. I've got down the treatments, the supplements, the drugs, and the yoga. Now I'm trying to just learn to relax. Duuude.