Hi, honey, I’m home!

Really, I’m home.  I wasn’t supposed to be.  I was supposed to be in the car with my husband driving to St. Louis for a wedding.  But I’m sitting in a chair, in my pajamas, amid papers, books, and empty glasses and cups.

I overdid it.

I know, I know.  You saw this coming from a mile away.  Who did I think I was, agreeing to work so many hours and travel three weekends in a row?

A friend asked me yesterday when I planned to leave for my trip.  When I told her I wasn’t going, she looked shocked.  I get it.  From the outside I look fine.  Really.  It is only inside my house where I collapse in pajamas and let the fatigue and pain rise to the surface.  It’s the weirdest thing.

Each morning, when my alarm goes off, I have to convince myself to get out of bed.  It can take anywhere from five to twenty minutes.  (This is shocking to my husband who used to comment on how fast I leapt out of bed in the morning proclaiming, “Let’s go running!) Once I drag myself to my feet, the first few steps look like those of a double amputee trying out prosthetics for the first time — wobbly, jerky, and uncoordinated.  By the time I make it to the bathroom, my steps are getting smoother.  After a shower, a smoothie, and a cup of green tea, I have been magically transformed into the semblance of a professional educator.  I am dressed, my hair is combed, I have even put on makeup.

After the 15 minute drive to work, the second cup of tea — strong and black — is starting to work and I am energized and looking forward to my day.  Before I know it, I have worked with four students for an hour each and it is time for my lunch.  Typically I walk across the street to the mall, take a lap, get a second cup of strong black tea, and make my way back to work.

Amazingly, I have the clarity of mind to work with three or four more students before I clock out and stumble my way to the car.  Typically it is driven by a family member — partly because we are sharing a car, but partly because no one knows for sure if I will remember how to get home after a seven to eight hour work day.

Once inside my house, I shed professional attire and don one of two standards — pajamas or yoga pants.  If I have any steam left at all, I make myself go on a walk.  If I am totally depleted, I collapse with an ice pack on the couch. Dinner?  Totally optional.  By 5pm I care very little about food or drink.  I am mostly into the staring portion of my day where I play Words With Friends, ‘like’ Facebook posts, and watch junk television.

If I have any cognitive functioning left, I might read…but nothing too heady…mostly young adult fiction or Jodi Picoult.

Finally, I surrender to sleep, setting the alarm to start the process over again the next day.

That is my life with autoimmune disease.  It is very different from the life I once lived. It is frustrating, because the person inside of me still wants to take road trips to St. Louis, to hang out with friends in the evening, to go to the movies, to play cards, and to regularly hit the gym.

And I can still do all of those things, but not if I work full time.  That is the exchange.  I can either work full time and do nothing else, or I can agree to work only part-time and maintain some semblance of normalcy outside of work.

I already knew this, of course, even before this summer working experiment.  But I needed to see it again.

When I took six months off from work, I started feeling pretty well!  I was working out, taking care of myself, and interacting with friends.  I started to think I had just been exhausted and that I would be fine getting back to my old routines.  That is the trick of this invisible illness.  You can forget that you have it.  You even start to feel a bit like a baby because you put limits on yourself that don’t seem necessary to those looking on — “What do you mean you have to sit down for a little while?”  “You can’t go grocery shopping and out to the movies on the same day?” “You look just fine to me!”

A person with autoimmune disease has to trust herself and stand up for herself even when it doesn’t make sense to others.  Yes, I do have to sit, or lie, down for a while. No, I don’t like to plan two outings on the same day.  Yes, I do look fine, but you can’t see how I feel.

And right now, I feel exhausted.  So, I am home.

Last week, we visited our son’s church where the guest pastor said the words, “God will sometimes immobilize you in order to circumcise your heart.”  I wrote those words down.  My journey over the last three years has been all about recognizing that I had been moving so fast, kicking butts and taking names, that I had been failing to turn to God as my strength.  I’m not mad that He loved me enough to take all my strength — to immobilize me —  so that I would reconnect with Him.  But, old habits die hard; I will probably need to learn this lesson over time.

2 Corinthians 12:9

My grace is sufficient for you, for my power is made perfect in weakness.