16 In all/ Health & Wellness

Understand M.E. ~ 3 Levels of Chronic Fatigue Syndrome

The initials stand for ‘myalgic encephalomyelitis’.  It is a condition that affects approximately 500k people in the United States alone.  It generally precedes a bout with a viral infection, but others have been diagnosed with M.E. without having had a virus.

It is thought to possibly be related to autoimmune deficiencies, and hormone imbalances as well.  M.E. also goes by the name of Chronic Fatigue Syndrome (CFS), and Post Viral Fatigue (PVF).  It is mostly known as CFS in the U.S., but goes mainly by M.E. in Europe.

Symptoms include: extreme fatigue (post exertion malaise)/Brain & Central Nervous System disorders (cognitive dysfunction, difficulty concentrating) dizziness-vertigo/ongoing flu-like symptoms, headache, joint pain, temperature control irregularities, swollen glands/sleep disturbances/IBS.

My M.E. is believed to have developed from a nasty encounter with  Epstein Barr Virus many years ago.  It comes and goes throughout the year.  It seemingly wanes in the summer months only to pick up momentum as I head into the fall.

This is the one that kicks my butt more than the fibromyalgia does.  My FMS can at times be bad, but is more of a painful nuisance than a serious debilitation (this is just me, there are people out there with FMS whose lives are severely affected ).  But, the M.E. is the one that scares me.  When I am in a full blown flare, I can be fairly low functioning.  If it were to get worse it could really affect the day to day in a critical way.  Right now, I would classify myself in the ‘mild’ category:

Mild: Patients are mobile, can care for themselves, do light housework and work part-time, or even full-time with the curtailment of all other activities.

Moderate: Patients have reduced mobility and are restricted in all activities of daily living. They have usually stopped work or school.

Severe: Patients are unable to do anything without assistance. They spend most of the day in bed and are sensitive to light and noise.

Yikes.  This is why I continue to pursue immune boosting and overall improvement of general health through as natural means as possible.  This is also why ‘self-care’  is vital to practice with M.E. as well as with all other chronic illnesses.  It is not always selfish to say no to some of the things asked of you, knowing there will be ‘pay-back’ afterwards.

Understanding your limits is essential.  Others often don’t understand why we look healthy but act as if we’re 20 years older than we are.  Well, thank goodness the world doesn’t hinge on they’re comprehension of why we ‘can’t just be normal’.  Seriously, aside from the condition itself, this is one of the most frustrating things we deal with: lack of understanding.

Understanding M.E. ~ 3 levels of chronic fatigue syndrome

Continuing to educate and to bring awareness to invisible illness has become a goal of mine, and one of the driving forces behind this blog.  People ‘get’ arthritis, people ‘get’ thyroid disorders, but they don’t ‘get’ Fibromyalgia/M.E./Lupus/Lyme disease, ect.  Usually, it’s just a lack of general information (ignorance), or the insistence in parts of the medical community to deny these illnesses the legitimacy they deserve.

Now, enough of my rant.  Last week I wrote a post on the benefits of pets in coping with chronic illness.  I asked for photos and promised to feature them here this week:

Elizabeth Cause of ‘Hope In Pain’  sent me a picture of her precious pooch:

funk

Such a good boy!!

If you missed out on this week’s  ‘parade of pets’, send me a photo for next week’s post and I will feature your fabulous fur ball!

This weeks ‘Crafty Corner Concoction’~

~Painting Stones ~

~stones from the outdoors, shape/size/character, your preference

~various colors of acrylic paint, avail at any craft store

~acrylic painting brushes

~small can of polyurethane sealer

Clean your stones of any dirt or debris.  Let imagination run wild.  Seal final work with polyurethane.

rock montfinal

 

(Click To Enlarge)

 

Enjoy 'ALWR' ?...Click here to SUBSCRIBE today and receive a FREE download & NEVER miss a post again!

Nothing Is Im'paws'ible ~ How Pets Help The Mental & Emotional State Of The Chronically Ill
Alas, Poor 'Nightshade', I Knew Him, Horatio... ~ Inflammatory Foods In FMS

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16 Comments

  • Reply
    Kathryn
    September 7 at 2:07 am

    Those stones are beautiful! I’ve actually got a big stone as a door stop but I may paint it up to make it look pretty. I came across your post on the much ado about monday link up : )

    Kathryn | nimblenote.blogspot.com

    • Reply
      kristine
      September 7 at 9:07 am

      Welcome Kathryn! Thanks for stoppin’ by! I love bringing nature indoors, I always think it makes the best decoration 😉

  • Reply
    Rachel Kelly
    September 9 at 1:21 pm

    Hi Kristine! I just want to tell you how much I enjoy your posts. Not so much about hearing that you are in pain, but hearing, and trying to understand and empathize with your struggle. As I read, I remember who you are, and can love you more. Thank you for your honesty and openness. I love you all the way from Seattle. – Rach

    • Reply
      kristine
      September 9 at 2:12 pm

      HA! HA! Hi Rach!! Are you enjoying the rain, you lucky weasel, while I swelter in the desert heat?! Good to hear from you! 😉

      • Reply
        Rachel Kelly
        September 10 at 6:51 am

        Yes! The rain is glorious! I love it up here for the weather! I miss everybody there though. I wish my sweet little biscuits could grow up there with you guys! Love you.

  • Reply
    Nikki Frank-Hamilton
    September 20 at 5:36 pm

    I am right there with you. I have APS/Hughes Syndrome. I work about 4 hours a week outside the home, on average. Some weeks I help cater events, I know that I will pay for it dearly, but I love it and the money is a great incentive. Very few people “get” that I can’t just meet for lunch or do a road trip, riding in a car-or driving-is very difficult for me. I can clean, do school pickups and grocery shop, but much more than that on a daily basis and I am beat. When I’m tired I hurt all over and I have brain fog. It’s really hard to keep up with everything and take care of ourselves, those of us with Invisible Diseases have to learn to say no, even when we’d like to say yes. Thanks for all your posts I don’t feel so alone!

    • Reply
      kristine
      September 20 at 8:32 pm

      As soon as I saw your comment on Facebook this AM, I looked up APS/Hughes Syndrome. So sorry Nikki, that sounds difficult to say the least. I’m so glad my posts are helpful. And I LOVE your mustache! 😉 Have a terrific week, and practice LOTS of self care 🙂

  • Reply
    Robbin
    March 30 at 11:02 pm

    The silent disease December 2015

    My name is Robbin Roybal Woolsey and I am a very private person and my intent is not to feel sorry for me by no means. I have always had a positive attitude, overcome obstacles and love life and all of Gods creation. I’m a Spiritual person that believes my Heavenly Father has carried me through tough times.

    This is my story.

    Imagine if people could see inside what you suffer with everyday what it would look like; you are severely disfigured that they shun away from you. People in your own family talking about you and saying “she’s on drugs” because you are not who you used to be. You are foggy and quiet. I have a cousin every time I see him he comes up to me and says “your eyes are bloodshot”. With that questionable look like I’m on drugs. It’s become routine.

    I get it, My eyes are glazed and I am in a fog at times. It’s bad enough that you are fighting depression and mourning who you used to be. You are not that person anymore. It still hurts the same.

    You put on the “happy face ” and you have learned how to be a perfected actor and smile as if you are absolutely grand. When inside your crying from pain. People will see me in pictures and say ” she looks perfectly normal”, she really isn’t that bad. Like I said we put on our happy face while suffering in the inside.

    Imagine waking up exhausted every day and it takes at least 2 hours to get your body somewhat functioning merely to conquer that day. Making your bed is an amazing defeat but you are wore out from it that you have to get back in bed to rest from that accomplishment. Taking a shower is exhausting and time consuming. Emptying the garbage will wear me out for 30 min. to a hour, getting the mail takes the same time. Vacuuming, laundry, dishes, dusting etc. the simple things put me in bed.

    All my Doctors appointments, visitors, activities with my Grandkids are a blessing but not without a cost. Imagine being a Grandma, I have three Grandsons and the guilt that comes with chronic illness, especially when babysitting is needed and I’m not able to help. I have learned ways of getting on my hands and knees to play Pirates on an ocean voyage or sit at the kids table while my Grandson makes me pretend lunch. This can set me back in bed for a few days. But it is worth every second I am with my boys.

    As the holidays get closer the anxiety starts up because you know what lies ahead of you. Not because of the hustle and bustle but the chronic pain and exhaustion you have to endure. You start a bartering system with yourself. For example, I will go to see Christmas lights knowing the next couple of days I’m in bed or play with my Grandsons knowing that I will be down the next day. I barter my time depending upon the severity of the pain.

    I can’t be reliable to anyone so I say “I can’t guarantee if I can be there”. It’s literally a minute by minute process because I can be fine at one time and then an hour later I’m in bed. I’ve had times where I wrestle with my self worth. There is nothing worse than feeling like I’m not contributing to the family. I feel like I’m a horrible wife and mother. But my wonderful husband and girls continually help me in those times. I am blessed beyond any words for my dear husband and girls who give me encouragement.

    I don’t mean to seem negative but reading other chronic illness has giving me the courage to write my own story. People have no concept of the pain we go through, that’s just it you can’t comprehend the magnitude unless you have an invisible illness.

    “AND I SAY TO MYSELF, WHAT A WONDERFUL WORLD”

    Robbin

    • Reply
      kristine
      March 31 at 12:13 am

      Robbin, thank you very much for telling your story here and pouring your pain out onto the page. Those of us who know what chronic illness is like, understand how strong you really are. We understand the effort and courage it takes for you to rise and face a new day. God bless you and your wonderful family who are there for you to lean on. I am thankful for the encouragement you have given me simply by being willing to share your story. ♥

    • Reply
      Kay Ward
      December 15 at 1:57 am

      I don’t even know what year your post is from Robin. You were speaking my language in your post. It really touched a chord when you talked about taking a shower. It is one of the hardest things I do. It really doesn’t send me to bed, except to rest long enough to feel like getting dressed, doing my hair, makeup, if I even put any on. I try to get out of the house once a week but it doesn’t always happen.
      Take courage my dear, we understand each other. We should have a convention but no one would show up! We know what the trip would cost us physically and emotionally so we would all stay home. It really isn’t funny, but I get excited when there is an opportunity to go somewhere. My heart and my mind say YES! Then the reality sets in and I stay home. My final class reunion is next summer and I don’t know if I can go. It out 50th and we do not have plans for anymore. It will remain to be seen if 2017 will find me at my reunion. God bless you. I understand and I would not wish this on anyone. Blessings to you. And I loved your ending…AND I SAY TO MYSELF, WHAT A WONDERFUL WORLD and it is.

  • Reply
    Andrea
    October 16 at 6:44 pm

    I just stumbled upon your post, and I can totally relate. I have M.E., somewhere between mild and moderate , and your ‘rant’ sounded like the voices in my head 😉
    Thanks for being real.

    • Reply
      kristine
      October 16 at 7:14 pm

      HAHA! Thanks Andrea! Glad you’re here 🙂

  • Reply
    Melissa Hammond
    November 27 at 5:21 pm

    I have fibromyalgia, CFS, and a bunch more stuff I don’t feel like talking about now. But, I have a question. Could a very bad bout of ‘flu be a virus that would cause the chronic fatigue syndrome?

    • Reply
      kristine
      November 27 at 9:01 pm

      Hi Melissa! I advise you to see a physician to get the answer to your question. As of right now, there is no agreed upon ‘reason’ for CFS. Only theories. Good luck to you though, and thank you so much for your question. Hope you get an answer 🙂

  • Reply
    Linda Adler
    April 22 at 1:32 pm

    It was refreshing to read your explanation of the three stages of ME/CFS and how self-care is critical to our well being. I too was diagnosed with ME/CFS after a 3 month bout of Epstein-Barr Disease in 1987. I went through hell with a medical community that was completely closed off to the diagnosis. For all the hell I went through with doctors over the decades I have also been very fortunate to have found the best of the best in my journey. I started out being very involved with activism and education regarding this illness, but life and this disease interrupted and I must say I became discouraged. Personally, I have seen very little progress and only the same questions and problems I experienced initially in the 1990s. I have also been diagnosed with “Post traumatic Fibromyalgia” as a result of whiplash from two different car accidents. I have seen so much more progress, recognition and acceptance for Fibromyalgia over ME/CFS in the past few decades. I attribute this to the fact so many of us cannot maintain any level of aggressive activism for any extended period of time and very few advocate for this illness that do not already have this illness or are caretakers of someone who has the illness. I highly recommend that anyone who has this illness read the book “Osler’s Web” by Hillary Johnson and to observe May 12, International Awareness Day for ME/CFS, founded by my friend Thomas Hennessey Jr., who passed away as a result of this illness. We need people to advocate at the local level. Get your community to recognize May 12th day via a proclamation and any other way you can think of to be seen and heard (letters to elected officials, letters to the editor, national calendar days, etc). Good luck and remember to listen to your body and respect your limitations.

    • Reply
      kristine
      April 22 at 9:22 pm

      Thank you for this Linda! And thank you for the book suggestion, I will definitely check it out!

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