Wednesday, August 18, 2010


Part 1: EBB
Before I left for Poland I told myself not to expect any improvements in health and just be satisfied with the outcome of the procedure whatever it might be. So when I felt immediate symptom relief from the treatment I was more than simply pleased---I was downright exhilarated. When the improvements continued growing I hoped they would never stop.

For several weeks I didn’t need to use my cane. When going for a swim I could walk cane-free from the locker room to the outdoor pool and back again. I remember enjoying how it felt to slowly swing my arms alongside my body as I stepped with confident gait. Looking around me at trees and flowering bushes was fun, mostly because I didn’t lose my balance when slowly turning my head and shifting gaze with my body in motion. In the parking lot I passed up the opportunity to use a disabled parking space even though it meant I would have to walk a longer distance to the entrance door.

I remember being surprised to see the time of day and realizing that I didn’t need my usual nap. In particular I delighted at finding myself awake and able to be cognitively present in the evening around 7:00, 8:00 and sometimes 9:00 pm. Previously my energy had been so low by 6:00 pm that I rarely did more than stay at home and read after that hour.

Although I’m very glad to have experienced for about four weeks much improved ability to walk, balance, think more clearly, and have greater energy, I went through a difficult time when the symptom relief lessened. After spending a couple days feeling sad, when even swimming wouldn’t snap me out of the blues, I had to admit that I’d become accustomed to my new-found abilities. Since then my life has settled into a familiar pace similar to how things were pre-Poland: I swim, do Gentle Yoga, read, play with my dog and help with CCSVI causes.

Part 2: FLOW
My symptom relief has increased since writing the last Ebb paragraph above, much to my surprise. While trying to understand the reason for the ups and downs of my health I came to the conclusion that I was using a lot of mental energy and not producing any good answers. (I try to steer away from those unsolvable puzzles in my life.)

Today I’m enjoying how I feel and am glad to have a day that provides more symptom relief than last week. It seems as if things are flowing again and I’ll try to use this time on projects that are more difficult (MS forced me to be good at prioritizing)!

One rather challenging task that I’ll spend some time on today is thinking about ways to not repeat the pitfall of disappointment during my Ebb time. Looking at my life realistically, Ebb is just as likely to return as Flow. Just like the cycles of nature, my disease follows a similar pattern of wax and wane. With feet planted firmly on the ground to avoid unrealistic expectations, I’d like to avoid getting the blues next time I wake up with diminished symptom relief.

Perhaps I’ll spend some time reading words of wise elders to hear what others have said about this predicament. I’m certainly not the first person to have encountered it.

What an incredible journey continues to unfold.

Sunday, August 1, 2010

Went to a Fiesta today and unfortunately had to leave soon after arriving because I overheated! As I'm munching on chips, guacamole and sipping on pepsi the sun starts beating down on my legs. Sadly the party had few seats in the shade and mine was becoming indundated with sunshine.

Long story short, Chris and I headed home much sooner than desired. And here I sit at my keyboard with the central AC keeping me functioning. This was the first time since Poland that I couldn't avoid heat despite my attempts to plan ahead.

To answer the question in the forefront of your mind, "No, the CCSVI procedure didn't get rid of my heat sensitivity!" I'm better right now with some symptom relief but I still completely shut down physically and mentally when my core body temperature goes up too high.

Here's what's in the forefront of my mind: If some people think that my improvements aren't real but just placebo, then is my continuing heat sensitivity also fake? If some symptoms are placebo, then symptoms that remain bad are the flip side of the same coin: All in my Head.

I only wish it were so.