A friend of mine posted the best quote on her facebook page by Franklin D. Roosevelt, “When you get to the end of your rope, tie a knot and hang on.” In essence that is what I have done over the last month & a half. I’ve been holding on as tightly as I can. Over the years I’ve come to realize that MS doesn’t sit still for very long. Just when things are quiet enough and your guard is down, the MonSter (as us MSers so adequately call it) will strike. Unfortunately I am learning that Heart Failure operates in much of the same fashion. I’ve been too tired to fight, so I’ve tied my knot and held on. And what’s the saying – it takes more muscles to frown than to smile?? Have you ever seen a serious fighter enter into a battle giggling? I would put my money on no. While I’ve been too tired to fight, I haven’t been too tired to smile or share a good laugh. And that has been what’s held me on that rope.
When I got diagnosed with MS I decided that “never” was not a word that would enter into my vocabulary. Any sentence with that word in it was simply a sentence not worth listening to. If someone told me I couldn’t, I would prove I could. I tried to take the same approach with Heart Failure. I’m quickly realizing it doesn’t quite work the same way. “Never” with HF may simply mean “just not right now” or it may truly mean “never” if I want to stay alive. And if I’m serious about beating this and not letting go of that rope, I have to understand and respect the difference. I’ll give you an example – skydiving, one of my loves and passions in life! My doc told me yesterday that I would never go skydiving again. In my heart I hope that really means just not right now. But in my mind I know the reality is my heart will probably never be strong enough again to sustain the intense adrenaline kick of skydiving. (with my heart as weak as it is right now, if I went skydiving there is a good chance I would go into cardiac arrest and be dead before I ever hit the ground). To be honest, if my heart does get back into the “healthy” range, I’m not so sure I’m willing to take that risk anymore. A definite change of perspective. At least I can say I’ve jumped not once, but three times…. And I have the video proof to watch when I get those urges to soar.
Yesterday I went to my monthly checkup with the cardiologist. My ejection fraction has bumped up from 25% to 30%. It’s still not in the “healthy” range, but we are moving in the right direction. In the past I would take this news and just run with it – literally. Badger my doc to let me back into the gym, back into my dance class. He would give me an inch, I would ask for a mile. (actually, if I’m being completely honest here, I would ask for the whole wall of China!) But today as I am grabbing a hold of my rope, I’m just going to be thankful for the inch I have. Thankful that while I am too tired to fight, I’m not too tired to smile. Because I do believe it was those deep belly laughs and smiles on my heart that gave me those 5 points yesterday – and nothing else. So, I will take every inch you will give me and polite decline asking for the mile.
Salt is Not the Spice of Life's Blog 
June 29, 2009 at 9:43 pm |
You once told me He only gives us what we can handle. I have always remembered those words when times were crappy.. My eyes tear up as I read and know I too cannot fix the broken.. But seemingly knowing He has a plan keeps me strong. Always.
August 31, 2009 at 1:48 pm |
my mother is diagnosed with MS too. although its indeed very rare for our race, she is one of the few who is diagnosed with the disease. thank you for being a great example to other ms patients out there. just hang on, because despite of the limitations of the disease, we do, You do, have so much to live for. 😉
September 1, 2009 at 10:45 am |
Pamela, thank you so much for your kind words. My hope is to show the good, bad and ugly with this disease, but in the end let people know you can beat it – in your own ways. Please keep me updated on how your mom is doing.