Category: chronic fatigue syndrome

I’m so Excited

Pink Fish

Pink Fish

In 2012, through an odd series of “coincidences”,  I took a painting class from Flora Bowley.

A very good friend at that time, tricked me into signing up for Flora’s eclass.  I was very sick with fibro, lyme and CFS.  I had been in bed for over 20 years.

I was kind of doing art.  But I was just too sick to do much.  Making a phone call overwhelmed me.  Trying to be creative was impossible.

Then, I discovered the computer app I now use, Painter.  At that same exact time, Flora came into my life with her philosophy of life and art.  I had a positive outlook on life, but it had never occurred to me to apply that to my art.  Duh!

Flora has shared stories of her students  in her blog.  This week, she chose my story.

Click here to read the blog.  While you’re there, check out her fantastic art and be sure to check out her classes.  Be sure to click on “Shop” at the top.  She has fantastic products made from her art for sale.  Flora’s art or her classes make fabulous Christmas gifts.

CFS/ME & FM Awareness Day

Let Your Light Shine

Let Your Light Shine

Yesterday, May 12, was the 22nd annual day to raise awareness of ME/CFS & FM.

The purpose of this day is to raise international awareness of these crippling diseases.  You can find out more about this day on Facebook.

Everyone that could was to light up their home, business, building (themselves?) in these colors.

There are specific colors that are used, purple for FM, blue for ME/CFS and green for multiple chemical sensitivities.

Of course, there was no news coverage here or in Canada that I or my Canadian friends saw, except for a radio station in Salmon Arm, British Columbia.

My good friend, Jerre Pacquette, has a weekly radio show every Monday called What So What.  It is broadcast on the radio station, Voice of the Shuswap.  It is repeated every Thursday.  It is an information show about health and eating well.

Yesterday, Jerre, had his show focus on this vitally important issue.  His guest was one of my other very good friends, his wife, Carole Jeffries.  Carole suffers from ME/CFS and FM.  She has been so very sick, but is now some improved.

It was very brave of Carole to go on the radio and share her story.  It is hard for all of us with these diseases to look back at the hell we went through before being diagnosed.  Then the nightmares of trying to find adequate medical help.  You all know what I’m talking about.  No one believes you’re sick.  Doctors are ignorant.  Friends and family don’t understand.  You don’t look sick, even though you feel like you’re dying.

So, although I didn’t blog about this yesterday, you, lucky readers, get another chance to listen to Carole’s story.  The show will be repeated on Thursday at 4:00 PM, Pacific time.

You can link to it here.

Give it a listen.  It also includes an excerpt from a mother testifying as to her two 20-something-year old sons’ trials with CFS.  It is a powerful show and not to be missed.

The art is a little collage that I put together.

Finally, A Way to Organize and Track Fibromyalgia

Abstract-09-1c

Abstract-09-1c

A good friend of mine just sent me information on a new app.  It is designed for people with FM or CFS to track not just symptoms, but pills, sleep patterns, pain, food on so on.

Finally!

This is such a complex illness it is impossible to keep track of what’s going on and how it affects us.

I just purchased the app at Amazon for my Kindle.  I haven’t explored it yet, so I don’t have any further details.  I just thought everyone would want to know about this right away.

Click here to link to their web page.

The picture above my blog is a seamless tile pattern design done from Abstract 9, which you can see on this page.

A Wonderful Group That Helped Me

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I was floundering trying to figure out how to live some kind of a life with FM.  I had spent most of my time in bed, and basically had no life.

One day while on the Internet, I came across a group called CFIDS & Fibromyalgia Self-Help.

This was truly an example of being led to help by God.  I never was much of a surfer on the Internet.  I was too sick.  But I know God led me to these people.

They teach small, on-line classes showing how to live a life with FM, CFS, etc.

They teach a concept of pacing yourself.  By pacing, I learned that I don’t go out and overdo and then crash for several weeks.  I learned to use what they refer to as an “energy envelope.”  Each day, I get up and decide, as best I can, how much energy I have in my envelope.  I then can figure out how much I energy I can spend on what I want to do that day.

If I’m able to be up and around, then I pace during the time I’m up out of bed.  I take lots of rests.  I do things in small bits of time.  Do something for 20 or 30 minutes, then rest.  If I recover, then do another 20 or 30 minutes.  By taking rests, I have found that I’m able to extend the amount of time I can stay out of the house.

I’ve also learned that I have limits.  Usually, I can easily do two hours out of the house.  But four hours is my absolute limit.

By pacing and resting, I have managed to put together a bit of a life.  I am so grateful for this group.

FM is so hard to live with.  No one really understands how sick I am.  Sometimes, not even my husband seems to understand.  (But, he is incredibly supportive most of the time.)  But the group of people I met in this class and now in the alumni group (which is free), I have met a wonderful, supportive and informative group of people who really know what I experience.

If you are feeling stuck and like your life is out of control, you may want to check this group out.  They also have a wonderful library of resources.

Click here to find them.

I Understand You Don’t Understand

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I’ve pretty much given up on people understanding chronic pain and fatigue and exactly what a chronic illness is.  I’ve come to understand most people just can’t fathom what my life is really like.  I have learned to accept that.

When I got sick, I became severely neurologically compromised from Lyme and FM.  I could not get out of bed due to extreme fatigue.  I couldn’t think clearly, I couldn’t find the words I wanted to say.  I was extremely sensitive to any kind of input of sound.  It overwhelmed me.  It made me feel like my brain was going to explode.  My reaction to prolonged talking, a noise or any kind of input was to sometimes start screaming.  I couldn’t  help it.  It was how I reacted.  My brain was on some kind of overdrive.  I had no control over what it did.

I also cried a lot.  I would be in the middle of a conversation and cry.  I cried from deep, deep grief of losing every single facet of my life.

The pain was unbearable.  It was down my entire left side.  From the top of my head to bottom of my feet.  It started in my head, then into my neck, mouth, and teeth.

Down my left arm and into my fingers.  It hurt to touch anything.  The pain continued down the side of my body, into my hips, butt, thigh, calf and foot.  It left no part of my left side untouched.  It was so bad that on some days I could barely walk because of the pain on the bottom of my foot.

I literally was too fatigued to get out of bed.

The only thing left of me, Kerry, was this horrid chronic disease.

What Happened When I Got Sick

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I’m going to talk about what it was like when I first got sick with Chronic Fatigue Syndrome (CFS), Fibromyalgia (FM) and Lyme disease.

FM, CFS and Lyme disease are difficult illnesses to diagnose.  When I first got sick in 1993, there was very little information for doctors or their patients about any of these diseases.

In 1993, my husband and I went to Mexico for Christmas.  While there, I ate some raw vegetables and guess what, got really sick.

When I came home, I continued to not feel well.  I was tired all the time, my head was cloudy and fuzzy and I could barely get myself to work.  Work was awful.  I couldn’t think, I was exhausted and the director was noticing.

The doctor I was seeing at this point knew I was sick, but didn’t have a clue what was wrong. However, he clearly saw I was exhausted and was giving me notes to my employer stating I was to take days off for rest.  Finally, one day I went in to see the doctor, and he said I just couldn’t work anymore.  I knew this in my heart.  But to admit it out loud, to come to terms with it was overwhelming.  I can’t work?  What would I do for money?  What would happen to me?  What was wrong with me? Frightened and scared to death is all I can recall.

This doctor referred me to another physician.

Then the nightmare really began.

Welcome to Kerry C. Mitchell’s Adventures

Circle-2a

Here I am, doing what I dreamed about.  When blogging first came about, I knew that was what I wanted to do.  Why wait so long?  I’ve been very, very sick.  Still am.

Why do a blog?  I want to share the experiences of my life and hope it helps somebody.

What’s this blog about?  It is about me getting sick with fibromyalgia, chronic fatigue and Lyme disease, not getting a diagnosis for 15 years and how after a bit of healing I’ve found some happiness and peace and rediscovered my art.

Why Kerry C. Mitchell’s Adventures?  What does adventure mean?  Well, looking it up, I found this:

  • an exciting or extraordinary event or series of events;
  • the participation or willingness to participate in things that involve uncertainty;
  • to risk saying something that other people may disagree with or find offensive;
  • to dare to go somewhere new or engage in something dangerous.

Wow, right up my alley.

For me, having a blog is an extraordinary event.  I welcome uncertainty, it always brings rewards.  I have always been willing to open my mouth and say things I know people will disagree with and sometimes find offensive.  Doing a blog seems daring and a bit dangerous.  I mean, I’m putting myself and my art out there. My soul, who I am.

Wonder if everybody doesn’t love me?  That’s OK.  I know I’m not everybody’s taste.

More importantly, I’ve learned that’s OK. .

The definition I like the best is that “this is going to be an extraordinary event.”  Yes, great, bring it on.  If you read about me, you’ll see I’m more than ready for an extraordinary event.

So that’s it.  I’ve done my first blog.

I honored you have chosen to read this.

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