Living with ME is like being in an abusive relationship,

but the abuser is our own body.

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It happens slowly. 

A little at first.
Just enough for you to still function, without anyone knowing.

You still have pockets of happiness, that you cling to like a life line.

You believe it's only temporary...things will get better. It's this thought, that helps you get back up....over and over.

You smile and all who see you, think everything is fine...."she must just be tired".
They don't know how hard you're struggling to look and act "normal"...whatever normal is...it's been so long, you can't remember any more.

It escalates.
You stop showing up. Excuses are made. No one believes you when you try to tell the truth. You can't see the bruises, but they're there. Then people stop asking. Isolation creeps in. You feel cutoff from everyone. You have never felt so lost and alone.

You waken to another morning, laying there, contemplating another day of being beaten. But you think of your loved ones and get up, because the other alternative is not an option.

You tip-toe through life on eggshells,
afraid you might provoke it.
Knowing full well how much it will hurt.
Knowing how bad you will feel after.

Things need to get done. Who else will do it for you? You push thru. You do what needs to be done, regardless of consequences.

You try to mask it with medication first, then alcohol and drugs, but nothing works. So what's the point? The problem is still there. It won't go away. You can't make it go away.

You dream of running away.
Away to somewhere quite and safe.
A place where you can find peace.
But...

You can't escape, because no matter where you go, it will find you. You are trapped, helpless,
knowing no one can help you.

You read while everyone is asleep. Searching for an answer, only to find the forever dangling carrot, always out of reach.

Day, after day, after day,
it's the same.

And still, you kiss your loved one's goodnight and get into bed with the hope tomorrow will be better.

But it's not.

By
Suz Hills Van Brunt

WAKE UP TIPS FOR LIVING WITH ME

#1 (for moms and dads)

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It's never too early to "kindly" teach your children the importance of cleaning up after themselves. The sooner they learn, the less stress and arguments later on. By everyone chipping in together, the task becomes less overwhelming.

When I first really noticed my ME symptoms, my youngest was 4 years old. Up until that point I was Wonder Woman, able to tackle any and all drudgery that lay before me. At the time, I had no idea the struggles I would face just trying to keep my house clean.
 I've never been one if those types that had to have everything spotless, but over the years, and now being housebound, I've learned to appreciate a clean and organized home.
 Slowly, out of necessity... plus I believe its a good life lesson that every child should experience...I taught them not only to pick up after themselves, but to help with other small chores. Things such as feeding the animals, helping to wash the dishes and taking out the garbage. As they grew, so did their responsibilities. I'm not going to sugar coat it, a lot of their friends didn't have to do chores, so it wasn't always a pleasant undertaking. Eventually, albeit sometimes grudgingly, they picked up the slack for the things I could no longer do because of my illness.
 Not sure how, but my boys are adults now and have turned out to be compassionate, helpful, hardworking human beings.....despite their mother's limitations💙

END ME-CFS

POOR GIRL PERSONAL

Some days I feel so incredibly sick, that I wonder how I keep going. Today is one of those days.

MY MECFS STORY

Part one

My name is Suzanne and I've had ME for 16yrs....
I guess it all started going down hill when I was 5. Not to sound like the beginning of a Woody Allen movie, I truly believe that's when the proverbial shit hit the fan.
I was kindergarten age when I began having kidney pain. This ended up to be a urinary tract infection, supposedly from spending too much time with Mr. Bubbles! With a pat on the head, a lollipop and some antibiotics, I was sent on my way....down the tubes.
From then on, about every year or two, I was back at the doctors complaining of kidney pain only to be sent home with antibiotics again and again. In between these bouts I had the normal run of the mill illnesses, sometimes needing antibiotics, sometimes not.
My entire year of 6th grade I was tutored at home, having to spend my days mostly in bed, in dire pain. This time with the help of a wonderful Homeopath, I was given teas to drink, foods to stay away from, medicines to boost my immune system and shots, given directly into my kidneys twice daily. For months, these shots were gently (or as gently as possible) administered by my mother, while I laid upon our blanketed chest freezer like a makeshift exam table.
Back to school and on into adulthood, like clockwork, every other year I would have these bouts of kidney pain, that mainstream medicine would continue to treat like an infection. Later on I discovered that my urine tests showed no sign of infection, ultrasounds were clear, but that bloodwork showed a slight elevated cell count. "Must be an infection. Take these pills and see me in a month," only to show back up again a year later, doubled up with the same symptoms.
It was at one such visit, while begin poked and prodded, experiencing excruciatingly sharp pains, that one annoyed doctor asked, "Why are you crying?"
This was my first dose of "It's all in your head".
From then on I forced myself to pull up my big girl panties and suck it up!

TO BE CONTINUED...

FREE COLORING PAGES...

I designed these originally as a way to meditate and get my mind from "Stinkin Thinkin", which I tend to do when my MECFS symptoms are bad...but yet good enough to sit up and doodle. Feel free to copy, print out and start meditating

WITH ALL GOOD INTENTIONS

As many of you know, things don't always work out as planned. Life likes to throw us a curve.....or many.
When I started this blog, I was so excited to share my stories, thoughts and ideas, I was going to post and post often! This was going to be great!

Yeah...what's that saying? Something like, "the road to hell is paved, yada yada yada".

Well, I intend to try again!!
Needless to say, I've got my hand basket all ready...just incase:)