Monday, January 9, 2012

New Normal

The Doctor and His Patient by Jan Steen

I have been showing an unbalanced view lately on my blog. I have shown the highlights and happy times from the past few months, and that is about all. Reality is, I’m exhausted and it took a lot out of me to paint Adelaide’s kitchen, travel to Louisville, go to Will’s graduation, and have a party for William. Life has been fun, but it has also been very hard.

Despite all of the fun and happy posts, most of you knew that you were only seeing half of the picture. I love that I can’t fool you all!  Some of you have made comments to me about how much those things must have cost me physically. One friend told me that her reaction to the Lego party post was, “She must've been dead to the world after making that cake & having a party." Haha!  Yep, pretty much. I was so tired after the party that I fell asleep before midnight, something I’m rarely able to do. I slept for 12 hours, and in the morning I still had huge bags under my eyes. I looked so bad that I actually laughed. I should have taken a picture; it would have been perfect for this post!

Here is what has been going on physically the last few months. This is the other half of the picture that I haven’t been showing:

“I’m tired. I’m so tired.” I have been saying that to Will a lot for the past three months. I had hoped to improve more from my crash in the fall of 2010, but improvements stopped coming as of sometime in September. Currently I’m functioning at about half of where I was in the spring of 2010, meaning that I can physically do about half of what I used to do each day. What used to be a good day is now just a memory.  What used to be an average day is now a good day. And bad days happen more frequently than they did 2 years ago. In short, I’m tired. Very tired.

I used to be a year-round competitive swimmer, and I remember what hard training felt like. I remember the physical strength and mental determination that it took to compete in a long race. Daily life is kind of like that now. I know that probably sounds like a stretch, but that’s the only thing I can think to compare it to. The simple task of heating up leftovers for the children for supper leaves my body crying out for rest. Physically it feels worse than exercise used to feel, and it takes just as much mental determination. My muscles are constantly telling me “We can’t do this!” and my brain is telling them, “You have to!” In everything I do now, my muscles are crying out for rest.  But even after I rest, my body never feels truly rested.

I used to be somewhat comfortable when I was in bed resting. It was easy to lie in bed. As strange as it sounds, it’s not really easy to lie in bed anymore. My body is uncomfortable. My muscles are uncomfortable, even when resting. I can feel the lack of energy in my muscles, constantly reminding me that my body is slowly growing weaker.

I have had to adjust to some new symptoms this fall. I have involuntary muscle contractions now that happen while I am resting. Sometimes they have been bad enough that my whole body shakes, leaving me exhausted. Mostly, however, they are small movements that are just annoying.

I had quite a few bad flares with gastroparesis this fall. I was throwing up a lot, which would leave me weak, tired, and dehydrated. The bad flares of gastroparesis have subsided now. I was hoping that would allow for more overall improvement in energy levels, but that hasn’t happened.

It has been hard to get used to “new normal” as we call it. I had mostly gotten used to my “old normal” of not being able to cook and clean and do the shopping. Now I have had to learn to adjust again, accept the energy levels I have been given, and serve the Lord where He has placed me. This is the life God has called me to, and He has a plan and a purpose even when I don’t understand.  I praise the Lord for sustaining me during these challenging days, and I pray that somehow He will be glorified through my life lived in weakness.


  1. Thank you for openly sharing how you've been feeling lately.  I'm sure that even putting together your blog posts is tiring, but it is so encouraging for me to see the peace that you still have even though your body feels like it's beyond your control.   

  2. Thank you, Janie, for your friendship and encouragement.  One of the blessings that has come because of my illness is a friend like you!

  3. Rachel, so sorry to read the post of how far back you have gone, I know it must be hard to write about, or to even admit.  I find myself in a new place as well, not tired anymore, just a bundle of energy.  I know this sounds good to most of us who have pots, but how does one fill a day of 20 hours when you can't do much?  I also am trying to cope with the new me and wonder how long this will last.  Thank you for sharing your story I pray to will see improvement soon, or acceptence to where you art at.

  4. Rachel,

    Thank you for your honesty and for your trust in God in what seems like a very hard place to be... you DO give God the glory by your trust and grace...praying now that God will continue to give you His peace and grace and strength.  You are amazing!

  5. Thank you so much for your encouraging words.  I really appreciate it!

  6. Thanks, Karen.  I'm doing so much better than I was in the fall of 2010, and I am very thankful for that.  It has been disappointing to not be able to recover more, though.

    If you need help filling up a day, you can volunteer for DINET. Hee hee. :)

  7. Praying for your sweet heart as you adjust to yet a new "normal". UGH. I am trusting that as you learn new boundaries in your disease your eyes open wide to the beauty that can be found in the little moments that others miss. You are beautiful...even with bags under the eyes. :)

  8. Thank you for your kind and encouraging words.  It is a blessing to know you, even if only in a small way.


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