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ME/CFS Guest Blog – Dealing With Stress by Tim Boland

5/22/2012

2 Comments

 
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With me, I see that having minimal stress is one of the biggest factors in my feeling better.   I have a business which I run, and though I have delegated a lot of it over the past year, if I have a busy morning which requires phone calls, especially around stressful things, the pain I feel that day is often much more pronounced.  

Before CFS, I still had a lot of stress at times, but I had a better ability to ‘disconnect’, to watch a movie or something on TV which helped to de-stress, to just put the stress aside for the day.   Having pain which typically increases as the day goes by, there is a constant irritant, even on those days when pain is minimal.   I’ve tried to describe it to some others that it’s like having a toothache all day, where the pain may subside but the pain resides in more than one place in my body with CFS.

I listen to a Chi Kung video nearly every day which on some days is remarkably relaxing as it is about developing a deep sense of our own breathing and our bodies.   In the past couple of days I’ve listened to Joseph Campbell’s Mythos, I write to friends on YouTube and post videos there as I love to photograph.   Today I went for a walk and it is uncommonly beautiful here, and I noticed I felt much less pain and happier.   I do feel there is a real connection between feeling happy, uplifted or even having moments of pure silliness, these emotions bring some real relief.   And I am doing much more than I was in my business a year ago, just able to work for longer periods of time, interspersed with very much needed periods of rest.  

I have run into some who say that getting a lot of good sleep and rest really does not make a difference with CFS.   I can’t speak for everyone but for me, sleeping and resting well makes a huge difference.   Having a good sound sleep at night often makes a big difference, in a positive way, in how I feel the next day.

     _____________________________

Thanks Tim!  How do you handle stress?  Do you have any strategies that work?  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.

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

Be Well Again,

Martha

2 Comments

ME/CFS Humor – Sometimes It Helps

5/15/2012

4 Comments

 
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© 2012 NBC
Over the years I’ve been able to develop a thick skin when it comes to hurtful comments from others about my struggle with ME/CFS.  Dismissiveness or even subtle innuendoes suggesting that my illness was a mental health problem are a reality and I’ve come to deal with them as part of the package of ME/CFS.  But recently, someone whom I thought ‘got it’, belittled my illness with a wave of her hand referring to it as a brief bout with severe depression so just get over it.  REALLY!?!

I’ve now got Seth and Amy of SNL zinging their Weekend Update one liners across the video of my mind.  Saying that ME/CFS sufferers are only severely depressed is like saying that ulcers can be cured by thinking pretty thoughts.  REALLY!?!  If ME/CFS patients are mental health cases then Aids is a lifestyle choice.  REALLY!?!  If you think that Prozac is the cure for ME/CFS, then I’ve got a bottle of snake oil that will cure your condescending attitude. 
REALLY!?!

Sometimes humor is the best medicine.  How do you use it?  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.

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

Be Well Again,

Martha

4 Comments

ME/CFS Pacing - Truths and Miss Queues

5/8/2012

2 Comments

 
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© 2012 TSM
This spring in New England has been a strange cycle of early prolonged hot weather followed by several weeks of cold, damp weather with a few nights below freezing.  And like most things that respond to warmth and sunlight, I was out in my garden in early March, clearing the flower beds of winter debris.  All of my perennials were sprouted and many already budding out way before their normal timeframe.  Now, after a few frosts, I look about and see damage on many of the flowers and shrubs.  And of course it reminds me of my successes and failures with pacing when I was struggling with ME/CFS.

It was so difficult to recognize the difference between solid progress where I could take the next step toward recovery and a good day which needed to be repeated at the same level for a while.  Of course my hope and emotions were almost always in the ‘this is it’ camp.  Unfortunately, most of the time I needed to stay where I was and follow the protocol until this new level of health was consistently repeated.  In the beginning, I jumped forward and was almost always rewarded with a set back.  Some more severe than others. But over time, I finally began to listen to my body’s call for restraint and to review my daily log for patterns that pointed to whether or not I was ready.

I admit that it took a strong hold on the reins at times when I really wanted to unleash a cantor.  Do you struggle with pacing?  How do you deal with miss queue days?  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.

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

Be Well Again,

Martha

2 Comments

ME/CFS Actions – Sign The Petition

5/1/2012

2 Comments

 
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When I was bedridden with ME/CFS, I was struggling just to do what I could to help myself.  The amount of energy I had to reach out to other ME/CFS patients was limited.  And at the time, the internet was in it’s infancy in terms of organizational communication.  For ME/CFS sufferers today, the World Wide Web is a blessing.  Even if you’re house bound, there is a wide selection of organizations working to solve the puzzle of ME/CFS and to support patients and their caregivers.

Someone recently sent me a link to a petition hosted on Change.org which sends a message to the CDC to reevaluate their ME/CFS research and to step up their efforts.  It is supported by many regional ME/CFS groups as well as individual researchers.  Please check it out and sign it today.  And send the link along to your other ME/CFS groups as well as friends and family.  This is something we can all DO.

Will a petition change anything?  There are no guarantees.  But we’ve all witnessed what can happen when people combine their efforts for a cause.  Do you know of other petitions or ME/CFS efforts that we can lend our support to?  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.

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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