Being tired is exhausting

I look normal, I act normal (relatively normal)However, I feel exhausted much of the time, my body aches from head to toe and my brain sometimes has trouble remembering or concentrating.  Please don’t tell me to exercise more, eat better, try acupuncture or go to a new doctor.  After 20 years I’ve tried just about everything there is to try that I can afford, swallow or legally do.

I don’t even care anymore what you call it: Fibromyalgia, Chronic Fatigue, malingering . . . it’s just tiring being tired much of the time.  I push through it otherwise I’d have no life.  But the price for pushing can be days of crashing so I pick and choose my commitments.

Judy's Journal, Mixed Media, Collage

judy’s Journal, Collage

No one knows what causes it or how to make it better.  Looking back, I think I’ve had it my whole life.  But I’m lucky because it didn’t become full-blown until I was an adult.  For teens and young adults it’s really hard. Read this article by teens and 10 things they want the public to know.   Teens who live with chronic illness and the 10 things they want you to know.

I’ve blogged about it before:

The Mask of Invisibility and me

Fibromyalgia, Dx: Hysterical Middle-Aged Woman’s Syndrome

I prefer not to talk about it, write about it, dwell on it.  It is what it is and I’m blessed that it’s not life threatening.  But today is World Awareness Day for neuro-immune illnesses of ME/Chronic Fatigue (CFS), Fibromyalgia (FM), Lyme disease, and Multiple Chemical Sensitivity (MCS). It’s an opportunity to raise public awareness of these conditions that impact millions all over the world.

It’s a good bet that you or someone you know has one of these invisible conditions . . . if you didn’t before, you do now.

Invisible Illness and The White Flag of Surrender

Judy’s Journal, Collage

I don’t know how you felt when you saw my post The Heart of the Battle  the day before yesterday.  A few commented that my haiku in the post expressed extreme sadnes.  I looked again and believe it’s a tired resignation  –  this is just how it is living with invisible conditions.

 

Haiku Heights
prompt, free

With resignation
freedom comes tip-toeing in
hushed breath of being

You see, invisible dis-ease and conditions have a layer to them that visible illness and conditions don’t.  I can’t SEE anything wrong with me and I  begin to believe that maybe everything is all right.  Perhaps I’m imagining the symptoms, exaggerating the symptoms.  Perhaps I am even causing the symptoms.

How I look and how I feel are not congruent.

About 10 years before I was symptomatic a woman

Judy’s Journal, Collage & Mixed Media

was referred to me in her late 50’s – I was in my early 40’s.  She comes to the first session with all her medical records.  Without exaggeration, it’s a foot thick.  She’s seen doctor after doctor, been to renowned medical centers, had evaluations by teams of doctors at teaching universities, undergone test after test after test and no one can find evidence there’s one thing wrong.  Referrals to psychiatrists pile up.

She was desperate for help. Her panic that no one believed her was palpable.  I’m not sure I believed her either.  How could anyone have so many things wrong with them, from headaches to gastrointestinal, from heart palpitations to joint pain and have every  test be negative.  She looked fine.  I too was unable to help her.

I’m now in my late 60’s.  I have clients today who are extremely disabled by their invisible conditions.  They too are desperate  for help, for relief.  I sometimes catch myself minimizing their pain or disability.  They look good, are smart, funny, intuitive. How they look and how they feel are not congruent.  Just like me.

My white flag of surrender?  There is nothing I can do, nothing I can say.  So I sit, listen and believe them with my heart, if not with my eyes.