...DEFEAT Chronic Fatigue Syndrome: ...............................................................You don't have to live with it
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ME/CFS Struggle – Work Every Hour

10/29/2013

2 Comments

 
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Full disclosure – I have been a Boston Red Sox fan since I was a little girl.  I have no idea why the game captured my imagination so young but I got hooked and still am.  Like many of the devout, I am used to the highs and lows of my team.  Right now, we’re on a high.  And of course I’ve been watching the post-game interviews. Without exception the players repeat the same mantra – work every pitch.  They remind me of my struggle with ME/CFS and how I was able to regain my full health.

Like the Red Sox who have approached this entire season with focus on “Every pitch, every out, every inning, every game”, I finally understood after two years of crazy push/crash cycles that I needed to bring my struggle with ME/CFS to “Every hour, every day, every week, every month.”  If I intended to be well again, I needed focus – consistent, every hour focus.

I needed to bring my struggle into the moment and make it the most important factor that effected each decision – everything had to be viewed through the window of my goal to regain my health.  And yes, I was blessed with the opportunity to make ME/CFS my focus every hour.  But it was not without deep sacrifices for me and for my loved ones.  This path is hard and long.  Some days seemed endless.  Some days I lost ground and some days I gained.

And like the Red Sox who went from last to first in one year with pitch by pitch focus, I regained my health in two years with hour by hour focus.  How are you bringing your struggle with ME/CFS into each hour of each day?  What are your strategies?  Please COMMENT or send in your thoughts and I’ll post them.  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
Go Sox!!  No offense intended to Cards fans.

2 Comments

ME/CFS Progress – Review Your Patterns

10/22/2013

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Picture© 2013 TSM
For many, Fall is the gateway through which we return to familiar patterns after the long warm days of summer.  Hopefully, we’ve spent some time in the outdoors and had a break or two from the norm. If you’re struggling with ME/CFS, the norm is the inability to function as a healthy person.  So the long days of summer may have only served to put an exclamation point on your disability and frustration which could have resulted in a push-relapse cycle…

As we return to normal patterns, it is obviously subjective.  What a typical day
looks like for one ME/CFS patient, can be completely different for another.  But as each patient looks back over the past year, it would be wonderful to see improved health since last Fall and disappointing to feel worse.  Which applies to you or those you care for? How do you get on the improved track?

For some, patterns are the key - unique patterns for each patient.  Specific to each patient and situation.  The key to recognizing patterns is keeping a detailed health log. As resistant as some may be to this idea, it is a focused way to get a handle on your unique version of this wastebasket diagnosis of ME/CFS.  A patient’s memory is impaired and often useless for holding the train of thought during a conversation.  How could the same person hold a week of patterns in his/her head?  And then have the recall to see progress over a year?

If you are a patient and you are not keeping a daily health record, start today.  Start right now.  Get a pad of paper, a spiral notebook, the back of an envelope – just start writing down a brief summary of your day.  If you have been keeping a record, what seems to be the most valuable information in your record?  What is missing and would help to know?  Please COMMENT or send in your thoughts and I’ll post them.  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

ME/CFS Realities – Accept and Move Forward

10/15/2013

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Picture© 2013 TSM
Two weeks ago I was told that the skin biopsy taken from my leg was positive for Basal Cell carcinoma.  As the words came over the phone line, 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.

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 ME/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 ME/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
ME/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

ME/CFS Reassessment – Take a Step Back

10/8/2013

2 Comments

 
Picture© 2013 TSM
Recently I’ve heard from several people who have been struggling with ME/CFS for many years. Their ME/CFS situation is frustrating and they are not getting better.  Status quo – no change.  Nothing is more challenging – physically or mentally – than not making progress.

The adage about insanity comes to mind.  Doing the same thing over and over and expecting a different outcome.  ME/CFS creates a cruel trap where you can get stuck riding the ups and downs of energy reserves and energy demands.  And repeating the same unsuccessful scenarios over and over again.

It’s important to take a step back and reassess.  How long has it been since you had a thorough medical exam and work up?  Do you have a successful working relationship with your current doctor? Have you provided yourself with a good sleeping environment?  Are you keeping a daily health record so you can understand your version of ME/CFS?  Are you tracking your patterns?  Are you repeating successful patterns?  Have you created a small support group around you?  Are you fueling your wellness with nutritious food and appropriate supplements?

What can you be doing differently that can change your current situation?  What successful strategies do you need to return to? 
What new strategies should you add?  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

ME/CFS Support Network - You have to Reach Out

10/1/2013

2 Comments

 
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Recently, the topic of isolation and ME/CFS has been raised frequently in emails I’ve received.  So often when we’re in an unfamiliar place, we tend to be isolated.  If it’s geographically unfamiliar, we resist asking for directions and just muddle along without help.  If it’s emotionally or psychologically unfamiliar, we don’t want to talk about it for fear of others judgment that we’re weak or crazy.  And if it’s physically unfamiliar, we rely on a medical system that for the most part doesn’t have a clue what to do with us.  For ME/CFS sufferers, that creates a triple play of isolation.ME/CFS sufferers, that creates a triple play of isolation.
In order to break out of isolation, we need to reach out.  Unfortunately, the nature of ME/CFS separates us from many of the daily networks that we used to depend on for connecting and support.  Our workplace, neighborhood, community groups and social groups are diminished if not completely unavailable due to the isolation that ME/CFS can create.  But despite our very limited energy levels, we need to reach out in order to create a support network.  So how do we do that?

After I was fully well again, one of the important things I learned was that many of the people around me wanted to help but didn’t know how to – friends, family members, neighbors, community members.  And even though I thought I had explained to them what was happening to me, many of them had no idea what I was actually going through.  At the time, that seemed unbelievable to me. 
But I realized how true it was when so many people – including a family member whom I spent time with – told me after they read my book that they never understood my illness until now.

So for someone who is already dealing with ME/CFS each and every day, please understand that MOST of the people around you don’t know what you’re up against.  And really, when you think about it, how could they?  As ME/CFS sufferers, we struggle to understand the roller coaster cruelty of ME/CFS.  It’s a nightmare!

OK, so you’re going to reach out.  First, people need to know what’s happening to you.  If you have a copy of my book, give it to the people close to you and ask them to read it.  Or find other pieces written by ME/CFS sufferers and share them.  This will be an eye opener for your family and friends. Then, come up with ways that people around you can help.  Even the simplest things can make you and them feel better.  How are you going to reach out?  Who’s in your support network?  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
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    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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