...DEFEAT Chronic Fatigue Syndrome: ...............................................................You don't have to live with it
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SEID/CFS Diagnosis – My Version

9/29/2015

2 Comments

 
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OK, picture me dragging my soap box out into the central square of your local park.  Hear the sound of the wood being dragged over the hard surface of stones.  See the people looking up and pausing, wondering what this odd woman is up to.  As I step up onto the box and clear my throat, everyone is now staring, expectant of what this person has to say.  Prepare yourself, I am about to pontificate.  Here goes.
 
I believe fervently that everyone who is suffering with SEID/CFS needs to know what my version of SEID/CFS turned out to be.  Yes, I know that we don’t all have the same disease and that we’ve been stirred into a confusion of diagnoses all mixed up in the same cruel pot.  And I also know that many of us shouldn’t even be in this pot as we have been miss diagnosed and we actually have other known diseases with known treatment plans.  Yes, I know all of that.  BUT, whatever triggered my version of SE/CFS, and as much as I followed the protocol, there was one key that we finally found, thru a constant review of my detailed daily health log, that was the last piece of the puzzle.  We think that this condition may have been triggered by my long term illness and may not have even been the original cause of my dis-ease.  Whatever the case, we eventually discovered that I was starving at the cellular level.  No matter what positive foods I ate, no matter how much I rested, no matter how much I worked my treatment plan and cut myself some mental and emotional slack, I was getting better and better but eventually hit a wall.  My functioning was vastly improved but I just couldn’t make that next step back to full health and ‘normalcy’.
 
It turned out that I was suffering from a ‘mild’ form of Ion Channelopathy.  You can read about it on this website under the menu option ‘Further Lessons’.  BUT don’t go there until you’ve finished reading this blog.  OK, still on the soap box, DO NOT run out and buy a tub of salt and start pouring it down your throat, gram after gram.  This will definitely make you sick!!  One person did that and couldn’t understand why he felt worse – duh.  Understand that I drank an ion cocktail just ONCE a day.  It took MONTHS for the cellular walls to reset and repair.  After one month of daily, reasonable treatment, I was starting to feel a little better.  This continued for SIX months of patient following of the protocol.  This is NOT the silver bullet.  And it won’t be the solution for most.  I only pontificate on it because I’d like to get it on the ‘screened for’ list so that a few more of us can get out of this cruel, wastebasket diagnosis.

 
OK, I’m putting away my soap box.  Thanks for listening.  You can go read the ‘Further Lessons’ article if you promise to be balanced and reasonable if you think it fits your situation.  So, enough about me.  Have you found an important key to your version of SEID/CFS?  Let us know as it might be important to someone else.  Please COMMENT on this blog or Send in your thoughts and I’ll post them with your permission.  You can use the Contact Form or send an email to Martha at DefeatCFS dot net.  And Guest Blogs are most welcome!

Look for a weekly posting on Tuesdays.  And consider being part of the conversation.
 
Be Well Again,
 
Martha

2 Comments

SEID/CFS Realities – Accept and Move Forward

9/22/2015

2 Comments

 
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On a routine visit to the doctor last week, I was told that my Basal Cell carcinoma had recurred in the same place as a prior surgery.  As the words came out of my dermatologist’s mouth into my ears, my focus on the day’s “To Do” list disintegrated.  OK.  New reality.  My reaction was very similar to what I did when I first heard the words “Chronic Fatigue Syndrome”.  Coming from a technical background, I read everything I could about what the diagnosis meant and what was the recommended treatment.  I had a distinct advantage this time around as the internet was no longer in its infancy and basal cell carcinoma is a recognized disease with an established treatment plan.  And recurrence is part of the known medical world.

Although I didn’t love what I was reading about BCC, I understood the clear advantage of being ‘blessed’ by the medical profession as having a ‘real’ physical illness.  The diagnosis of SEID/CFS can often be, for many of us, a thinly veiled recommendation that we needed to start working with a psychiatrist - that was my experience.  This “it’s all in your head” pronouncement left me angry and mostly in denial for a long period of what was – with hindsight – completely wasted time and squandered energy.


After almost two years of fighting my SEID/CFS diagnosis, I finally accepted the reality of it.  The whole package of the lack of medical answers, the cruelty of the highs and lows, and the understanding that I needed to solve the puzzle of my version of SEID/CFS.  No one was going to do this for me.  And none of this was easy to swallow.  But once I accepted this truth, I was able to strategize and move forward toward healing.  Where are you on the reality spectrum?  How are you moving forward?  Please COMMENT on this blog or Send in your thoughts and I’ll post them with your permission.  You can use the Contact Form or send an email to Martha at DefeatCFS dot net.  And Guest Blogs are most welcome!

Look for a weekly posting on Tuesdays.  And consider being part of the conversation.

Be Well Again,

Martha

2 Comments

SEID/CFS Attitude – What Others Say

9/15/2015

2 Comments

 
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When you’re struggling with SEID/CFS, it can be a daily challenge to keep your own negative attitudes in check.  It’s all too easy to fall into the trap of wasting precious energy grinding about the things you can’t do, the thoughts you can’t keep straight and the important people in your life for whom you can’t be present.

It becomes even more challenging when you have to deal with the negative attitudes and insensitive comments of others.  One group says ‘you look OK to me’.  Then there are the ‘doubters’ who look at you as if you’re either physically lazy or mentally weak.  And then you face the curious crowd who seem interested in your illness only to the extent that they want to tell you about themselves or their sick friend.  It’s hard to know what to say without being irritated (only to confirm their assessment of your mental weakness) or rude which can alienate people whom you otherwise value in your life.

Fortunately for most, there are a few steadfast supporters, family members or friends, who get it and want to support your path back to health in whatever way they can.  And even these caring people can say the most insensitive things at times.  When I heard these comments, I donned my writer’s thick skin which I acquired as the result of many tough critiques.

What do you say when people make insensitive comments?  Do you react at all?  Please COMMENT on this blog or Send in your thoughts and I’ll post them with your permission.  You can use the Contact Form or send an email to Martha at DefeatCFS dot net.  And Guest Blogs are most welcome!

Look for a weekly posting on Tuesdays.  And consider being part of the conversation.

Be Well Again,

Martha

2 Comments

SEID/CFS Change – New Beginnings

9/8/2015

2 Comments

 
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Although the official beginning of Fall will arrive on the Autumnal Equinox, the days after the long Labor Day weekend and the sighting of a morning school bus bring on the feel of the changing season.  Although some of us would enjoy an extra week or two of August weather, it’s time.  And nature reinforces that with the cooler nights and comfortable daytime temps.  When I was first sick with SEID/CFS, I would grind on myself about another season come and gone – wasted – while I languished in bed.  I was still caught up in the desperate search to find someone who could cure me.

Then I finally began to realize that there wasn’t a silver bullet – even now, I’m sad that there isn’t – and that I needed a new approach.  A change - A new beginning.  I had been doing the same things over and over again and expecting a different outcome – I believe that’s the definition of insanity.  And yes, anyone would get a little insane if they knew they were physically ill but no one could or would provide some answers.

Many of us find change to be outside of our comfort zones.  But change is the way forward for many of life’s challenges.  SEID/CFS is no exception.  It wasn’t until I took a hard look at myself and my specific version of SEID/CFS that I began to heal and work my way back to full health.

What change will you bring to your approach to SEID/CFS?  What new strategies will you add to your daily regimen?  Please COMMENT on this blog or Send in your thoughts and I’ll post them with your permission.  You can use the Contact Form or send an email to Martha at DefeatCFS dot net.  And Guest Blogs are most welcome!

Look for a weekly posting on Tuesdays.  And consider being part of the conversation.

Be Well Again,

Martha

2 Comments
    Picture
    Hello,  I'm
    Martha Kilcoyne

    Welcome
     to our Community!

    After struggling with CFS for four years I am fortunate now to be fully well and making choices about how I want to live my healthy life.  One choice is to be an active part of the CFS community and to offer one voice from the fully recoverd to the dialogue.  I'm glad you're here!   For more about me, here's my Bio.

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