Slowing Down is Surviving; Not Giving Up

When I was in the sixth grade they asked us what we wanted to do when we grew up.  I had a detailed plan at the age of 12 right down from law school to the age I would retire, sixty-five to be exact.  Like many women, I’m a planner.  What’s hard is that illness comes into your life and rearranges it.  Myasthenia Gravis didn’t ask for my permission when it invaded my life at the age of 24 in 2008.  It came with the fury of a hurricane and bulldozed many of my plans.  At that point in my life, I was working on law school applications.  I was also working on getting a book that I finished at the age of 23 published.  The way MG has madeover my personality has changed both my goals and values, which leads me to today’s WEGO Question below:

Evolution:  
Write about how being a patient or caregiver has changed you. How have your goals changed? Have your values changed? 

nhbmp-logo-300x83MY ANSWER:  Adjusting is Not Giving Up

Simplify.  In a word I’ve learned (and am still learning) to simplify my life—my daily routine, my timeline, and my expectations.  Before I got sick, I was working on getting the aforementioned book published while personally helping depressed students at my alma mater (Northwestern University) and coaching high school mock trial.  One day my mom told me, “You have to be patient with other people.  Most people are not like you.  When most people come home from work, they fall asleep in front of the television.  But you—you work all day.  After work go out to dinner with a friend.  Then you work some more and then you plan a big dinner party for your friends.”  I was puzzled because in retrospect, I didn’t know the definition of fatigue.  Being tired was a foreign concept to me.  But today I could write a compendium on the subject.  Many days it’s just hard for me to get up and do my Pilates though I push myself—before I got sick, this was easy because my body was in sync with my mind.  What I’ve learned is that adjusting my expectations (finishing one to five things in a day as opposed to ten things by noon) is not giving up.  It’s surviving chronic illness.  slowdownnotaraceIt’s taken me a long time to understand this because I lived at one speed for 24 years: Go. Go. Go.  And now I have a better understanding of both sick people and even healthy people (who are stressed by our overworked society).

Adjusting Long Term Goals

Since I have to work to pay for my medical bills, I have less time to work on other goals like this blog and the book.  So I have prioritized the book and put off law school as a goal for the future.  I do receive some pressure from my mom to start law school as many of my Northwestern friends have graduated from graduate school.  But what I realize is that I have to go by my internal clock and trust my body; I no longer care about other people’s timelines for me.  When I started this website last year, I wanted to dive into social media right away.  But I realized that a blog is a huge commitment while being sick.  After about four months, I started a Twitter account (handle @JessicaGimeno).  And just last week, I started a Facebook page for Fashionably ill (JOIN us here!).  A few years ago, it would have been hard for me not to go “all-in” right away without feeling like a failure.

What about you?

How has illness changed your goals or expectations?  How have your values changed?  Are there any changes you’d like to make in your life?  Stay tuned for tomorrow’s post as I continue WEGO’s November Heath Blog Post challenge—answering one prompt per day.  You can follow WEGO on Twitter; their handle is @WEGOHealth.

–Your Stylist,

Jessica Gimeno

JessicaGimeno

Hi, I have five illnesses--bipolar disorder, myasthenia gravis (neuromuscular autoimmune disease), polycystic ovarian syndrome, asthma, and psoriasis. Most of the organs in my body are affected. I'm dedicated to being a stylist for sick women. As someone who has experienced changes in my appearance due to my 12 meds (including Prednisone), I know how hard it can be when your face and body change overnight. (In fact, because of treatment, between 2008 to 2010, I went from a size 0 to a size 10. While I lost the weight, there are permanent changes in my face and body, which I've grown to appreciate.) My blog will also help women deal with other issues like surviving chronic pain and fatigue. Healthy people can also use this blog as a window into what life with illness is like. Let this website be a place where we can draw strength from each other despite our illnesses and find solutions to our everyday challenges!

2 thoughts on “Slowing Down is Surviving; Not Giving Up

  • December 9, 2014 at 9:44 pm
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    Hi Jessica,
    This article is perfect. I am like you in so many ways. I am beyond an over achiever and recent illnesses have bade me slow down. While it’s heartbreaking to me to not meet my expectations and my plans, it’s a lesson I’m learning. I’m not giving up, I’m surviving. First, it’s not possible for me to continue at my previous pace. Just getting through a day at work is difficult. I am not adapting and changing some goals of mine and expectations. Thanks for sharing this, great read!!

    Reply
    • December 9, 2014 at 10:23 pm
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      Hi Lauren! It can be heartbreaking, indeed. It helps to know that we’re not alone–that many of us are living this together. Are you on Facebook? Fashionably ill has a page; I’m there.

      Reply

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