Hi, My Friends! Letter 2
I thought I would devote this note to the list of chronic ailments that I figure qualify me for writing you letters like this.
After all, I am not a physician, specialist, therapist, nurse, or even anyone very important.
I am just a chick who has been living through several all-the-time illnesses for many years and have a heart to share with other warrior/sufferers so that all of us may be reminded that we are not alone.
Rewind 30 years.
I was a healthy, happy, productive, busy, successful wife, mama and homemaker.
All my life I had dreamed of family, as in staying home and taking care of my nest, and my dream was unfolding nicely.
After a fun day at the zoo with my hubby, our two little boys and some friends and their kids I remember riding home feeling especially tired.
Not bad, just tired.
I shrugged it off to the days outing, went home got my family some dinner and we all went to bed.
Little did I know that this would be my last day of living “un-chronically.”
The next day I awoke and well, I couldn’t move.
I couldn’t walk. I couldn’t talk.
I couldn’t breathe. Something was terribly wrong.
I crawled down the stairs and lay on the living room floor.
What was happening?
I assumed I was coming down with a virus. But if that were the case this was like a virus I had never known.
My good mama came to the aid and spent the day taking care of my 3 and 1-year-olds while I lay on the hardwood floor.
I. Could, Not. Move.
My breathing was faint. I felt like I was to pass out at any minute. I noticed my pulse ran very, very slow.
“Maybe you should go see the doctor if your that sick,” My mom said by the afternoon.
Not thinking straight and not knowing what to do I followed her advice and crawled out to my car and drove (I have no idea how) 8 miles to the next town.
I had not called for an appointment.
I just remember walking into the small office, looking at the receptionist and saying, “Is the doctor here?” while I walked back into the examination rooms.
As I entered the narrow hall a nurse came over to me and said, “You can’t be back here” as I fell into her arms and passed out.
I woke up on an examining table.
Two nurses were standing over me shaking me, “Kim, open your eyes. Don’t close your eyes. Don’t go to sleep. Stay awake. Wake up. Look at me!”
Everything was muffled. My breathing was obviously labored. I couldn’t speak. I couldn’t answer.
I realized this was bad when one nurse took my blood pressure and I heard (something) over 3.
The bottom number of my blood pressure was 3.
I saw the nurses glance at each other with deep concern on their faces.
“Quick, go get the doctor,” the oldest nurse said to the younger. She hurriedly left the room while the elder nurse kept coaxing me awake.
Long story short…by the time the doctor came in he had no idea what to do with me and sent me home after drinking a cup of water and laying there for an hour.
The nurses were mortified. They had seen me at my worst. He had seen me as I was slightly rousing.
So, the nurses basically carried me to my car. And I drove home.
This was my entrance into the world of the chronic.
The world of invisible illness.
The world of the “Spoonies.”
The world of the “we don’t know.”
The world of the never-get-betters.”
In the blink of an eye. In one overnight.
My healthy, strong, productive body had turned into a temple of pain, weakness, and exhaustion.
And for months and months and months and months, no one could tell me why.
The day I was diagnosed with Chronic Fatigue Immune Dysfunction Syndrome (CFIDS) and Fibromyalgia, I cried in the doctor’s office.
I jumped up and grabbed the specialists hands and shouted, “I’m sick!”
Dr. John Condemi laughed and said back, “Congratulations! You’re sick!”
When one is treading the rough waters of invisible illness one feels very alone.
It’s up to that one to keep swimming. It’s up to that one to keep your head above water.
And there are so many voices from the shore that keep shouting your way.
“You’re depressed stuck home with two little kids all day.”
“You need to eat better, exercise more, or do some yoga.”
“Try these herbs.”
“Take these pills.”
“This is all in your head.”
“I’m tired too.”
“You don’t look sick.”
“Have you tried (fill in the blank) they worked for my cousin and she was just like you!”
And the biggest, baddest voices would shout, “You’re crazy!”
So, the one treading water swims to every doctor, every magic cure, every herb, oil, home and Chinese remedy they can find in an attempt to get well.
And they swim to a licensed psychiatrist to find out if what lots of people are saying is true…
Maybe you are crazy. Maybe you are making yourself sick. Maybe you are not trying hard enough to get better. Maybe.
I understand that I entered the world of the chronic at a time when CFIDS (now called Myalgic Encephalomyelitis)
was basically unheard of and rarely believed, even by physicians.
There was no support groups, internet access, magazines, or even guidelines to help get the sufferer through their day.
This was uncharted water….and I was swimming it.
I remember canes, walkers, couches, and beds downstairs for me to lay in.
I recall crawling from room to room much of the time.
We planted chairs in the doorways so I could pass from the living room to the kitchen and sit down to rest on the way.
We arranged the “Cuddly Chair” in the corner of the kitchen with a huge basket of kids books beside so I could sit, rest, snooze, or read to my littles.
I had my “Big Blue Chair” in the bedroom for rocking, nursing, and spending countless sleepless nights…one of the worst symptoms of CFIDS.
I got sick with other things.
I stayed home while my growing family went out.
If I was feeling spunky I would go along in the car and lay in the backseat while my hubby took the kids off on an adventure somewhere.
I would cry all my tears before their return then listen to the stories of the fun that they had.
Cause that’s what a good mom does.
I once went to the zoo with my growing family….in a wheelchair.
Three times over the years I begged God to, “Take me home and get a real wife and momma in here for this family!”
Once on a very sick day, I hear the town emergency siren sounding. I was thrilled.
“Thank You,” I mouthed as I half crawled, half stumbled outside into the summer sun.
I made it to my lawn chair, lay back and smiled as I watched my kids innocently playing.
“Thank You. Please send someone to come take care of the kids till their dad gets home.”
I rested. I waited. I looked at my kids.
It seemed like forever but finally, I heard the ambulance siren and it was headed my way.
I relaxed my body with a final “Thank You.”
After a few moments, the sirens passed my driveway and continued down the street.
With tears streaming down my face, that no one saw but the Lord, I made my way back onto the couch where I would spend the majority of my child raising years.
If you are a “never-get-better” I’m certain that you can relate to this portion of my story.
If you are a “chronic like me” I bet you know that this letter drudged up a bunch of hard memories that will likely trigger my PTSD.
If you too have an “invisible illness” I’m sure you know that not every part of life sucks but sometimes ya gotta tell the tale.
And if you cried with me when you read this, then I know that you will understand that the rest of my chronic illnesses will have to wait for the next letter.
Wherever you are in your journey my friend, please know that you are not alone, though you will feel it.
Remind yourself that not every minute will stink.
That good things still happen.
That there is still life to live.
I promise that once we get past my “credentials” we will journey together through this.
I will share helpful hints, silly stores, and deep thoughts on living chronic.
We will search for treasure in the darkness.
We will swim together and I will yell good things from your shoreline.
Thank you for allowing me your time and brain space today.
Until next time.