Feeling “Normal” for the First Time in Years; Can it Last?

Three days ago I woke up feeling normal for the first time in four years.  I cried tears of joy.  Not knowing how long the feeling would last, I called my friend Roger to tell him the good news.  He said, “What do you mean ‘normal’?”  Well, normal is what healthy people experience—an effortless approach to necessary functions like breathing, walking, chewing food, etc.  When I got Myasthenia Gravis four years ago, it was like I lived my whole life in color.  Then one day when I was 24, for no apparent reason, the color left—it got darker.  And darker.  And soon I was living in sepia—a two-toned world.  That is what I’ve known the past four years.  I look like I’m 18 on the outside but feel 80 inside.

My “BMG” Life, Before Myasthenia Gravis

I should mention one exception to my BMG life, which stands for “Before Myasthenia Gravis.”  I already had Polycystic Ovarian Syndrome (PCOS) for several years.  So I knew pain but I only hurt a third of the time.  (Perhaps other women with PCOS have a harder time).  But still 1/3 is better than my AMG life (you probably guessed that stands for “After Myasthenia Gravis”?), which is pain 24/7.

What little things changed because of MG?  Well putting my shoes on has been a pain.  I hate bending down.  So many things in life suddenly feel too high or too low. Lots of drawers and shelves suddenly felt too low to reach.  I hate having to pick up something when it falls—gloves falling off the table at a restaurant when I’m out to dinner, for instance.  And my bed (I had a great bed with drawers beneath my mattress and bookshelf) suddenly felt too high to climb in.  Straining for something a few inches above my head hurts.  I’m making everything in my room one level—so nothing is below my knees and nothing is too high either.  I’m running out of space!

Will normal last?  Will I reclaim space in my bedroom?  On Tuesday, it lasted all morning and then wore off.  I was tired in the afternoon per usual.  On Wednesday and Thursday, there were moments (five to ten minutes) here and there when I was living in color.

Me and my toddler-doctor Mikko

A Thymectomy: Hope for a World in Color?

I hope to get better.  Three years ago I had a thymectomy.  Basically, they cut my neck open, pulled my thymus out (which is by my heart), and glued my neck back together.  Recovery hurt like a mother.  Surgery comes with no guarantee of helping.  There is, however, a 40% chance all my MG symptoms can disappear (though I will probably still be on medicine).  And there is an 80% chance of seeing a decrease—but not elimination—of symptoms.  But there’s a catch:  If it works, it can take up to six years to work.  Six years!  That’s longer than college, a presidential term, and some TV shows.  I have endured primarily because of my faith.  And friends and family.  I have great nieces and nephews—my four-year old nephew Mikko has made himself my self-appointed toddler-physician.  He comforts me whenever I’m in pain!  I wish every chronically ill person had a Mikko.  But I cannot rent him out.

Your Turn?

Have you experienced moments of “normal” since getting sick?  How did your illness(es) change your life?

–Your Cancer & Autoimmune 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!

3 thoughts on “Feeling “Normal” for the First Time in Years; Can it Last?

  • August 26, 2012 at 7:49 pm
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    Hello,

    I read your guest post on Natasha Tracey’s blog and thought I’d stop by and say hello as I find you very inspiring! I knew nothing of Myasthenia Gravis prior to reading your article and I am so sorry that this is something you have. I really admire your positive attitude.

    I have bipolar disorder, and have recently been diagnosed with an autoimmune inflammatory arthritis which basically causes inflammation in my spine but also throughout the rest of my body. I struggle with fatigue and pain everyday. I am so pleased to come across your blog – it’s so timely.

    In answer to your questions, I experience periods of feeling normal less and less as time goes on (treatment is thus far ineffective), but I felt quite a lot better than normal this morning, and my mood improved dramatically. When it’s easy to just get on with things, it makes life a whole lot brighter.

    I look forward to reading more of your posts.
    Sara

    Reply
    • October 21, 2012 at 9:29 pm
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      Dear Sara,
      Thanks for leaving a comment. I appreciate your honesty and bravery ins haring your life. What treatment do you undergo for bipolar disorder? What other subjects would you like me to cover/.
      –A fellow autoimmune sister,
      Jessica

      Reply
  • December 31, 2012 at 12:40 am
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    hi. I was diagnosed with myasthenia gravis about 1″ years ago when I was 18 and recently with pcos. I spent about a year confined in bed and had two pretty rough years. But then things started looking up. 10 years later I am blessed to live full life. I still have days when the sight of stairs makes me want.to.weep. But all in all it’s been good. The pcos is the more recent on bringing with it the dreaded weight gain but I have that I will be fine. It’s good to meet people goinggh the same thingthing

    Reply

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