Chronic Illness, Contentment, Ehlers Danlos Syndrome, Sjogerns Syndrome

It’s Not My Job

As I work to correct my former mindset, I realize how ingrained my old thinking had become.  “Getting Better” was my job, and I worked at it 24/7.  It was always in the back of my mind and what I discussed on a regular basis.

job

Striving to Get Better can help a person, because we don’t want to give up on our health.  But, attempting to get better by constantly searching out new means of accomplishing it, can take your entire life.  After all these years of my attempts to find a magic pill or treatment, I’ve come full circle.

During these years, I discovered that I had more diseases than I first thought.  With this new knowledge came new worries.  How was I to treat these diseases?  And, as you discover that you have too many disorders to count, it can be overwhelming and even discouraging.

I feel like I have reached an end to the diagnosis stage (unless another illness develops).  I’m in the midst of waiting to see if the medications will help.  As I said, Plaquenil takes 6 months to a year before the effect will be certain.  So, doctors aren’t wanting to start me on any other drugs right now.

Now that I’m trying to change my mindset from Getting Better to living right now, I feel relief.  I’m trying to focus on gratefulness even more and enjoy each good thing.  God has blessed me with a great family and support.

relax

One of my goals is to add beauty into the day.  Instead of wearing black sweats and a grey tee, I’m trying to add a colorful top.  The days when I’m physically able, I’ll make more of an effort to put on some makeup.  There are still days when I’m not able to even get out of my pajamas, and that’s fine.

Without putting myself on a guilt trip, I still want to do more in my day.  Yesterday I was able to get up and do quite a few things: laundry, trimming my dog’s hair (at least his head), and filing all the stacks of paper in my living room.  Doing these chores made me feel victorious!

Today, I’m definitely paying for it.  But, the way I look at it, it’s better to do something one day and nothing the next, than doing nothing ever.  With chronic illnesses, I feel that we need to keep a sense of humor.  With chronic pain and illness, I try to laugh at some of the things that happen to me (when I can).

After taking Advil this morning, I was able to put on a bright, colorful shirt with my leggings.  Now, when I pass a mirror, I can notice my cute shirt instead of my messy hair!

I’m also trying to get away from putting myself down for gaining weight and not exercising.  Everywhere I turn, I hear that I need to lose weight and exercise to get better.  Well, I want to do that, but it’s not working.  Physical therapy continues to push me to do static stretches, which are bad for Ehlers Danlos and make me hurt more than ever.

flower

The diet isn’t bringing any weight loss, but it makes me feel better.  My digestion is better and I feel that over time, it can help me to be healthier.  That is my goal.  If the Plaquenil gradually increases my energy level, the exercise can start.

What I’m trying to say is, it’s not my job to Get Better.  People with well-known and researched diseases have established treatments that have been proven to work.  I have EDS, Sjogrens, Mast Cell Disorder and more, and these don’t have any cure or treatments that work for everyone.  The trial-and-error treatments take a long time to work.

My goal is to be content, take my pills, and try to live a happy life.  I have God’s blessing whether I’m sick or well.  His blessing to me is the peace and joy that are mine.  Many people won’t understand, and that’s alright.  It’s also not my job to make them understand.  I’ll just keep focusing on contentment.

And let the peace of God rule in your hearts, to the which also ye are called in one body; and be ye thankful.  Colossians 3:15

Disclaimer: I’m not a medical expert. This article contains only my opinions.  If you have a medical concern, please consult your personal physician.

@2018, copyright Lisa Ehrman

 

6 Comments

  1. Dorothy Boucher

    I am so glad you are able to share this with us, not just about your pain and struggle but also your accomplishments as you should. Every day even when its hard, give thanks and put on that beautiful scarf or get out of slippers and throw on those sneakers. Its a big step ever day but every day we strive to do a smile , a smile in our hearts.. My prayers are always with you, I know our heavenly father has not forgotten you, stay strong.. hugs..
    @tisonlyme143

    1. xaoti

      Great encouragement, Dorothy! Being thankful for all the good is the best way to spend out day. I wish and pray the best for you 🙂

  2. I understand about the plaquenil. I waited four miserable months before insisting that we add another lupus med in order to save my sanity. Although I still can’t stop plaquenil or I flare like crazy. I hope you get somewhere better without stressing about it

    1. xaoti

      Oh, that sounds dreadful, Ava! I hope this medicine combination will keep preventing flares for you. It’s so hard! Take care of yourself 🙂

  3. Thank you for this post! I’ve also found myself steering away from thinking of getting better as my job. It’s easy to get stuck and exhausted staying there, and then still feel like you’re failing at your “job.” Thank you for the reminder that living life and practicing gratitude offers more freedom.
    What you wrote about adding beauty reminded me of a quote I love: “I am going to make everything around me beautiful – that will be my life.” -Elsie de Wolfe

    1. xaoti

      The freedom of letting go of our “job” is truly beautiful. Thanks for that quote, too. Using my life to be a positive influence is much more worthwhile 🙂

Leave a Reply

Your email address will not be published. Required fields are marked *