...DEFEAT Chronic Fatigue Syndrome: ...............................................................You don't have to live with it
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ME/CFS Double Life – Two Identities

3/25/2014

4 Comments

 
Picture© 2014 TSM

When I was at my lowest point suffering with ME/CFS, it seemed like I had only one identity – a bedridden sick person.  As I slowly began to regain some functioning, I would have brief periods of experiencing a different identity – a normal healthy person.  This happened when I had a conversation about something I was passionate about and I could keep focused for ten minutes or maybe even half an hour. During that time, I forgot about ME/CFS. I stepped out of that label and, for a while, became free of it.  Then, of course, it would end and I would ‘remember’ my situation.

As I grew healthier, I got to the point where half the time, I could actually participate in some normal healthy person activities and relish for a while in forgetting about ME/CFS and its cruelty.  But it would end and I would have to ‘remember’ again.  Straddling both worlds of sick and healthy was not only a physical challenge in terms of pacing, pacing and more pacing.  It was a mental marathon ‘double life’ of moving back and forth between these two identities.  Of learning to appreciate and revel in the times of acting and feeling like a healthy person and then handling the let down of remembering the reality of my situation.  I worked hard at not letting the upside create an even lower downside.  I kept my eyes focused on shifting the percentages – slowly and steadily – to more and more normal health person and less and less sick person.

How do you handle the Double Life of sick and healthy?  What are your strategies?  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

4 Comments

ME/CFS Symptoms – Consider Food Allergies/Sensitivities

3/18/2014

2 Comments

 
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Although most ME/CFS patients share a core group of symptoms, many have additional symptoms that add to the complexity of treatment and healing.  Depending on how long ago you were diagnosed with ME/CFS and how thoroughly you were tested, you may or may not have explored food allergies or intolerances.  There are in fact some patients who have been diagnosed with ME/CFS who are actually suffering from food and/or environmental
allergies.

Recently I was reading about Gluten intolerance and I was surprised at the overlap of symptoms with the standard definition of ME/CFS – Fatigue, feeling rundown like you have the flu, joint pain or numbness in extremities, ‘foggy mind’ where concentration is difficult, headaches, prolonged changes in mental health and gastrointestinal discomfort.  It seems that when our bodies are immunocompromised, the symptoms are similar no matter what the cause.  According to the CDC, children in the US suffering with food allergies increased 18% from 1997 to 2007.  An estimated 4% of the US adult population is food allergic - about 9 million.

Could you be struggling with a food allergy?  Could a food or environmental allergy/sensitivity be complicating your recovery?  Consider this as part of your continuing ‘case study of one’ as you work to understand your version of ME/CFS.  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 Sleep Deprivation – Switch to Rejuvenating REM

3/11/2014

2 Comments

 
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Everyone experiences periods of lousy sleep.  It can be due to illness, disrupted schedules, emotional distress, worry, etc. Eventually, if it goes on for too long, we start to feel sleep deprived.  If you’re struggling with ME/CFS, this can become status quo layered on an illness that already robs you of desperately
needed deep sleep.  For ME/CFS patients, it’s imperative to create optimum opportunity for restful and rejuvenating sleep.

First, be sure that your sleeping environment is perfect for you.  Mattress, pillows and covers should be just right – Goldilocks style.  The degree of darkness vs. light and silence vs. sound need to suit you.  Do you share the bed with a
partner or a pet?  Ensure that you have plenty of space and that no one disturbs
you.

Second, you need to have a sleeping schedule that is adhered to religiously - no exceptions.  Plan your evenings and days around bed and naptimes. Everything else should be secondary. This sounds like it could be impossible but if you plan around it, it’s doable.  And it pays off.

Lastly, once you have a good environment and a regular schedule, all you need is to get to REM. For me, this was elusive while I was struggling with ME/CFS until I worked with my doctor to select the right medications for me.  Pain was the main reason that I woke up frequently during the night so I took a combination pain reliever and muscle relaxant half an hour before bedtime.  Then we added a non-addictive sleep aid.  After a few weeks, I was starting to see some improvement. After a few months, I could begin to feel the difference.  I was finally beginning to get some solid REM sleep for the first time in more than a year.

So how is your sleeping environment?  Do you keep religiously to a bedtime and rest schedule?  Do your sleep aids work for you? 
How would you rate your quality/quantity of REM sleep?  
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 Apprehension – Letting It Go

3/4/2014

4 Comments

 
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I’ve recently had a series of emotionally challenging events in my life.  It’s resulted in hesitancy about what’s coming next – an apprehension about the future which I know will at some point entail more of the same kind of challenges.  And of course it renewed the feelings that used to affect me when I was struggling with ME/CFS.
 
I had tried mightily to not let feelings of anxiety or fear of more bad days get to me.  My cognitive brain accepted that I would have to deal with them as I
slowly recovered but my emotions and psyche were uneasy – waiting for the signs and body pain that would be the harbinger of a bad day. Sometimes I would allow this anxiety to effect my day even if it was by comparison a reasonable day.  It took a great deal of intentional focus to see the positive side of how I was physically feeling.  And to ignore
the anxious voice inside of me.

The strategy that finally worked for me was planning ahead.  During the time I was bedridden, I would plan by the hour.  What should I be doing during the next few hours to achieve a good outcome?  As I got healthier, I planned by the day.  What should my
day look like in order to stick to the protocol and have a successful day?  Eventually, I was looking at a week and planning a well paced reasonable series of days that generated a positive result.  It seems simple but it worked.  How do you let go of the apprehension?  What are your strategies?  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

4 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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