Monday, July 23, 2012

Courage: A chronic illness requirement

I've said for years that it takes courage to live with lupus. It takes courage to wake up each morning and put one painful foot in front of the other. It takes courage to stare those medications in the face each day, to put on a happy face at work, and to crawl into bed each night, knowing tomorrow might bring something even more painful than it did today.


And yet, this realization didn't come from my own experience with lupus. Rather, it came from the thousands of interactions I've had with lupus patients from around the world. Only through their personal stories of determination and triumph did I come to realize just how much courage it takes to deal with a chronic illness. 

In the past week alone, I heard from three friends who shared with me snippets of their challenges with their own chronic illnesses. It is these stories that inspired this post:

*One of my girlfriends just opted to start using a wheelchair to facilitate her ability to get out and about, after years of struggling with declining energy levels, fatigue, and overall weakness due to her chronic illness. In one fellow swoop, I say she's taken one giant, positive, productive step toward making herself mobile again. Have that, you nasty, debilitating chronic illness!

*Another girlfriend, overwhelmed by fatigue, headaches, chest pain, and a handful of other paralyzing symptoms while traveling, canceled her flight home at the last minute, knowing she was incapable of making the trip on her own with her baby in tow. Instead, she asked for help - reaching out to her husband to drive her and their son the four-hour trip home, knowing her husband would have to turn right around and drive back for work commitments. She knew she couldn't do it any other way...and the courage it takes to make such an assessment is huge. What an example of knowing your limits (even when you didn't know you had any!), and making a good, solid decision.

*Another girlfriend, after being prescribed more than a dozen medications, marched into her doctor's office, asserted herself as never before, and said something like, "I'm no longer comfortable being on all of the medications you've prescribed. What can we do about it?" Oh, yeah - taking charge and feeling better. That's how it gets done. If we don't speak up when we feel something's out of line, who will?

Of course, I'm sure none of my friends see the monumental courage it took to make the choices they did, and yet these are perfect illustrations of the kind of courage, strength, and self-awareness one must possess in order to carry on, despite an illness.

And as these examples demonstrate, it can be the choices that are put before us on an every day basis that require the most courage. Daily excursions, caring for our children, and daily pill administration - these are issues we deal with day in and day out.  And when the day comes when we say "enough is enough", that is a courageous day indeed.

Let these ladies' stories be inspiration to you as they have been to me, prompting us to muster up the courage to make our own positive changes, despite our illness.


8 comments:

Heather said...

I found your blog about two weeks ago while I was waiting for some lab results and my doctor to decide if it was lupus, RA, or something else. My fingers were crossed for option C, but apparently it's RA. Your blog gives me a lot of hope in a kind of scary time, so thank you.

Incidentally, I mentioned the pill bags to my mom and she just sent me one--I got it Friday. The handwritten note was a nice touch :)

Observations of a Crazy World said...

I love this post. I had an interesting exchange with some friends lately while I was posting information about Lupus Month in May on my Facebook page and it was the first time someone had said they thought I was couragous and I remember thinking to myself "I don't see it." I think we get so caught up in the moment that we don't think about the difficulty involved in everyday decisions. Thanks again for putting this whole thing in perspective on a regular basis.

Sara Gorman said...

Heather - I hope you like your pillbag! Your mom included such a nice note - enjoy! And I hope that the option B diagnosis is at least a step forward, in that you can now seek and receive the treatment you need...best wishes and thanks so for sharing!

Sara Gorman said...

And Observations - I'm so glad you agree! Lupites (and RA'ers!) ARE courageous, and these ladies remind me of just how true this is. Just glad you have good friends to point that out...they sound like keepers. :) And good for you for talking up lupus on Facebook. I sincerely appreciate your comments - I look forward to hearing from you again.

latasha said...

It is almost 3am. I can not sleep because my mediport has been swollen & painful since I had treatment last week Wednesday. I have lupus/ms. When I read ur blog I felt like crying. It described exactly what I go through daily. It helps to know I am not alone. Thank u 4 such caring & empowering words. God bless.

Anonymous said...

Courage was the first step (again!) to a better way of living with chronic illness and now the new wheelchair (currently a rental). Our family wondered ... Would it be a tangible reminder of further decline or a positive way to live a better life? Hands down the wheelchair has been so liberating! And the people your friend encounters have been so encouraging -- more positive energy. The only question now is: what spiffy color will she choose for her personalized wheelchair?

Sara Gorman said...

Latasha - I hope you're feeling better, although I'm sure your port has been through the wringer (again and again, perhaps!) since you commented. Thanks for your comments - I truly appreciate them and know that feedback like yours is what keeps me writing this blog!

And to Anonymous - I'm so happy to hear the wheelchair has brought freedom! Anxious to hear what was the color of choice!

Latasha said...

thanks for your response. I'm in the hospital again. Its frustrating & scary this time. My regular doctor is in Italy. I have a new doctor covering for her. He knows nothing about my case or lupus. He just put me through alot of test I didn't need that came back normal. Guess all these pills r doing there job. Kinda thinking there must be a better way to conquer than disease. :)