Chronic Fatigue Is…30 Fill-in-the Blank Descriptions

Chronic Fatigue Is...
Chronic Fatigue Is…

Last year, I had an incident where one of my doctor’s assistants were being unhelpful.  I needed a standard refill of one of my medications, which I have been taking for five years for maintenance (for PCOS, polycystic ovarian syndrome).  The first time I called, they were curt and said they wouldn’t have time to refill it because they were busy working on EMR records.  Second time I called, they also hung up on me.  As someone with four other illnesses (bipolar 2, myasthenia gravis, psoriasis, and asthma), I had many other things to juggle–refills of ten other medications and doctors’ appointments.  My cousin, Rachel, who is a doctor told me, “You can’t put up with that.  You should report them to your doctor.”  I was hesitant because my doctor has been wonderful to me, often giving me meds for free and letting me visit her for free when I was financially depleted after I got myasthenia.  I told her I didn’t want to do that; she insisted that no patient should be treated like that.  On the way to another doctor’s appointment (this one for myasthenia gravis), I called a third time to ask for my PCOS meds.  No one picked up.  (It took them three weeks to call the pharmacy!)  There was a lot of traffic on the way to the hospital, and I realized I didn’t have it in me to fight.  I was tired and not in a temporary way.  I had been tired–to varying degrees–for years.  I thought:  I’m tired the way some people are short and some people are tall.  I am tired the way some people have brown eyes and some people have blue eyes.  Fatigue is now a part of me and, is no longer a temporary state. Basically, I deal with daily fatigue due to chronic illness.  (However, I’ve made great strides very recently with MG treatments, physical therapy, and a non-GMO diet; probably the best I’ve been since 2008.)  Because I don’t think one sentence can suffice in describing the toll fatigue takes on our minds and bodies, I put together this list of 30 phrases.

  1. When you text your family member in the bedroom down the hall because you’re too tired to get up
  2. When you can’t find the remote so you leave the TV on rather than get up and turn it off
  3. When it takes days or weeks to respond to an email (or send one)
  4. When you have to choose between eating or sleeping
  5. When you have to choose between changing into workout clothes or exercising
  6. When you’re not sure if you locked the door but stay in bed anyway and don’t check
  7. When you’re starving in bed because you’re too tired to walk to the refrigerator (or your muscles are too tired to chew)
  8. When you haven’t showered in three days and you can build a nest with your hair
  9. When you hear people talking about a TV show you hate but you know the whole plot anyway
  10. When you come home from work and go to sleep with all your clothes on (bulky winter coat and scarf included)
  11. When pouring cereal into a bowl becomes your definition of “cooking”
  12. When you come home and spend four hours in bed trying to get up so you can wash your face, brush your teeth, and change into pajamas
  13. When you leave the TV on because you long to hear the sound of a human voice
  14. When you have to choose between flossing your teeth or gargling with mouthwash
  15. When you don’t have energy to put your clothes on because you used up all your energy taking a shower
  16. When you just spent five hours playing Candy Crush (okay, maybe that’s everyone)
  17. When you missed your most recent shift of medications because you were too tired to get them in your purse in the living room
  18. When you’re too tired to respond to your best friend’s text message
  19. When you haven’t updated your LinkedIn profile in a year despite getting laid off nine months ago
  20. When you spend hours in bed holding it in because you can’t get up to go to the bathroom
  21. When your day starts at 4 pm
  22. When your annoying coworker keeps telling you “you look tired” (because sick people don’t own mirrors)
  23. When you wrote a birthday card weeks ago but still haven’t mailed it
  24. When a loved one does something terrible, but you don’t get angry because you don’t have the energy to “go there”
  25. When you see an old friend at the grocery store and want to say “hi” but don’t because you have to walk an extra ten feet
  26. When you can’t remember the last time you read a book (or something intelligent)
  27. When your children can pronounce medical terms most adults have never heard of
  28. When your five-year old nephew sees you with your head bowed and he puts his hand and your arm and asks, “You’re tired, right?”
  29. When you leave your Christmas tree and decorations up all year long
  30. When you’re tired of being tired

Fill-In-Your-Blank!

What is chronic fatigue to you?  How has it changed your life?

–Your Stylist, Jessica

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!

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