Tuesday, September 2, 2014


I am sitting in my chair.  My mind is racing with the things I need to do; make a menu, grocery shopping, laundry, organize my thoughts for a meeting tomorrow, etc.  I am still in my pjs at 12:00.  My body just won't cooperate.  I am not in severe pain and I am not running a fever...at least I don't think so.  My body has just quit.  It does this sometimes.  My energy bottoms out and it is just hard to get up to pee.  Yes, I am serious!  I sit here and know I need to go, but trying to convince my body that using energy in that way is absolutely worth it, is difficult.  I wish I could say this is due to...but I can't.  Right now I know that my iron has bottomed out, so I am awaiting an iron infusion that will help dramatically.  But it is not always that easy.  When you have several autoimmune diseases, fatigue is just part of your life.  But what is difficult for those of us who suffer this, is that people think they understand.  When you are confronted with someone who has cancer, unless you have had that cancer, you are instantly in a place of curiosity and want to understand where that person is coming from.  When you are confronted with someone who says they are extremely fatigued, you tend to launch into cures, your own experience, etc.  There is no curiosity, there are no questions, there is only judgement and knowledge.  But, if you take the time to really listen and be curious, you might be surprised.  For instance, have you really ever been so fatigued you had to talk your body into getting up to pee?  I mean seriously?  Have you ever been so fatigued that when your stomach alarms you it is way past time to eat, you still cannot get up to feed it?  Sitting here right now, I need to do both...pee and eat.  Writing this is exhausting me, and I have already taken several breaks and am foggy enough to wonder if what I am writing really makes any sense whatsoever.  But rereading it?  No way!!  So I sit here with a brain totally active, although hazy and a body that can't follow.  It is frustrating to say the least.  I look at facebook and see all the activity that people have been involved in this past holiday weekend and I am ready for a nap!  I envy them.  I envy the energy they have to get up early while it is cool and go for a walk, paddle around a lake, weed a garden.  The energy they have to cook tremendous sounding/looking meals for their loved ones.  The energy they have to travel to see family.  The energy they have.

Don't feel sorry for me.  Don't pity me.  I am okay with my life.  I know that this extreme feeling will soon be over, as soon as insurance is done putting the doctor's office through its paces and finally approves the infusion, I will feel much better.  I will never have the energy you have, but that is okay.  I have found my limits, my tricks, and I live a full life.

I am lucky to have friends who love me and accept me as I am.  I am the luckiest woman in the world because I have a husband who loves me no matter what.  He doesn't let me fall down the rabbit hole of inertness, but he doesn't push me beyond my limits either.  I have 2 beautiful children who live so gracefully with the uncertainty of a mother who may or may not be able to follow through on promises.  I am blessed.

So, do me a favor.  Appreciate your energy, your body's ability to do what you want to do.  And also, be curious about those in your life.  Don't just label them and think you "know".

Now it is time for this body to move....some things it just has to do, and thank god I can still do them.


  1. Great piece, KaKi! Hopefully, it will serve as an eye opener for some. Hugs, my friend!

  2. That would be beyond frustrating-I would imagine. May the infusion process occur soon, and it's impact be swiftly realized.