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Immune Support – Who Do We Listen To?

5/29/2018

2 Comments

 
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Most ME/CFS patients would agree that supporting our immune system is key to a successful path back to health.  We recognize that this system is a 24/7 work horse that never rests.  The majority of challenges to our person health that we encounter go undetected by us due to the vigilance and vigor of our efficient immune systems.  And some researchers support the theory that part of the ME/CFS struggle is due to a compromised or ‘on tilt’ immune system.
 
So what should ME/CFS patients do to support our immune systems?  From my perspective, it’s hard to find definitive information unless it’s followed by an ad for the recommended product.  At one extreme are the recognized research groups who won’t commit to anything specific.  At the other extreme are the passionate semi-scientific articles extolling the virtues of a ‘total solution’ product.  ME/CFS patients find it difficult to sift thru all of this when so much is at stake and brain fog is dulling one’s judgments.

Here's a link to an article from Harvard Law School “How to Boost Your Immune System.”  It’s couched but ultimately informative.  And it gets us into the supplement discussion again.


For me, eating healthy food loaded with nutrients and getting REM sleep were the highest priority in my efforts to support my immune system as I was working to defeat CFS.  What are your strategies?  Have you found a combination of things that add up to a healthier immune system?  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

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ME/CFS Recovery – Trust the Process

5/22/2018

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People use the word trust a lot.  I’m not sure if they really understand its meaning.  I recently had some sparks fly between me and someone I was working with on a project who is also a good friend.  We were both surprised by the sudden eruption but I told her it was OK because I trusted her.  I know her good intentions and the stress she’s feeling because her name is on the project.  And it reminded me of my struggle with ME/CFS when I was riding the daily roller coaster despite my efforts to follow the protocol.
 
On days when I was on schedule and feeling like I was managing my energy, getting rest and doing ‘the right things’, it was easier.  On days when I felt lousy and nothing seemed to be going according to plan, it was horrible.  Those bad days could do me in if I allowed myself to stay in that frustrated, down place.  I finally came to understand that I had to trust the process of recovery.  It’s easy to trust the process when you’re having a ‘good’ day.  The real test of trust comes when you’re having an ‘awful’ day.
 
So, on those awful days, I had to steer my frustration and depression back into trusting the process.  Of course, you have to have a process to place your trust in.  My process was my protocol with the daily record as the anchor.  It served not only as the grounded center of my work to solve my version of ME/CFS but it was an anchor for my sanity.
 

We all know too well how much fodder ME/CFS serves up for self bashing and depression and just ‘giving up’.  The process was my way of turning that negative energy into positive action to get well.  I placed my trust in that process even on the ‘bad’ days.  Do you have a process you can trust?  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

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ME/CFS Irony – Mind Over Matter

5/15/2018

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I did a lot of surfing and exploring of the definition of irony before I would even consider using the word.  As many have experienced, there is a current culture of ‘looking down one’s nose’ at the ignorant use of the term irony - Alanis Morissette a prime example of being taken to task by many.  I have decided that I’ll risk it.  Please feel free to chide me if your take is different.
 
Here’s my perspective.  We live in a culture where people are recognized, honored and even championed when they ignore the physical signals of their bodies and push themselves to the brink of their capacity - to a breaking point in the pursuit of some objective.  It’s lauded as the ultimate achievement of Mind Over Matter.  We see this most dramatically in athletic competitions – the Olympics come to mind - but it also has a formidable presence in the work place, at home and even in personal leisure pursuits.  Ultimately, we are held up to the ‘You Can Do It All’ standard.  And in a lot of situations, we manage to get away with it for a while.
 
Then ME/CFS takes up residence.  I don’t think that it’s a coincidence that some ME/CFS sufferers would label themselves as Type A personalities prior to ME/CFS.  And so when we are challenged with something that threatens us to the core of our physical capacity, what’s the instinctual ‘go to’ solution?  Yes – Push Through It.  Mind Over Matter.  And we are shaken when this not only doesn’t work but it makes ME/CFS worse.  Not to mention the opinions expressed by others who observe and conclude that we’re soft, undisciplined, burnt out or just depressed.

 
So here’s the Dramatic or Tragic Irony.  The solution to personal challenges that has been engrained in us since childhood – Mind Over Matter – is the complete reverse of what is required to get control over ME/CFS and to ultimately recover.  And it is delivered, wrapped in an ugly package of judgment that we’re weak and in some way inferior.  Did I get it right?  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


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ME/CFS Sleep Deprivation – Switch to Rejuvenating REM

5/8/2018

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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


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ME/CFS Guest Blog – Dale Miller’s list of Health Ideas

5/1/2018

2 Comments

 
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Dale Miller recently sent me his list and I wanted to share it.  It’s long so I’ve selected twenty to start.  Pace yourself LOL.
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I have been reading your blog for at least a couple of years.   You always have a good thought in there that is valuable in helping me run my life.  I’ve been dealing with these issues for over 15 years.  At different times, I have been in the pit of despair at ever being able to do anything, and at other times, ringing with ecstatic joy at being reborn into a full rich exciting life.  It has taken me a long time, but most days, I have learned to savor each day or hour that I am able to function and show up for my life.
 
Overtime, for me, I have learned that maintaining optimum health is a long haul operation.  My view is that watching out for and caring for my body just came at an earlier time in my life than it does for most people.  Everyone, if they want to operate at their peak has to be careful to eat the right foods, watch over their mental processes. get the right health care, proper rest, good companions, love and care.  We all need/want these things, not just people with a chronic health condition.
 
Take care, Dale
​
HEALTH IDEAS
April 19, 2018
  • Positive/negative affirmations.  Whenever you say, “I’m tired.  I’m old.”  These are negative affirmations.  You may not believe in affirmations, nevertheless you may be doing negative affirmations every day!
  • Develop a tiny interest, something to think about every day.
  • Keep the mind off sickness, push the mind over to the interest.
  • Audible books for distraction.  Try happy tv or radio.
  • Music always playing in the house.
  • Dance it out.
  • Sing, doesn’t matter if you have a lousy voice, raises the endorphins.
  • Find someone or animal to touch.
  • Small exercise daily, even if only visualizing.
  • Starfish 10x a day.  A starfish is when you raise your arms as high as possible over your head, inhale deeply, then bring your arms down and exhale.
  • Understand completely the connection between illness and depression.  If you are long-term ill, you are probably depressed.  Suggest Jonathan Harr’s book, Missed Connections for what to do about it.
  • Constantly be looking for something to feel good about.  Roses, flowers, puppies, kittens, dogs.
  • Find all the parts of your body which are working.  Chances are, 97%+ is working, notice that and catalogue if you need to.  Focus on what part of the body is working and functioning, not on what is not.
  • Slow down, taste everything, smell everything, hear everything.
  • Correct your posture constantly.  A slump posture makes you feel bad and breathe shallowly.
  • Negativity bias.  This is a bias that all humans have which is a survival skill.  It’s very valuable if there is a saber tiger in your immediate vicinity.  Otherwise, you are trained to always seek the negative.  This is not helpful if you are trying to recover from a chronic illness.
  • Control your input, you may have to lose negative friends and family.
  • Forgive everyone who has ever wronged you in this life-including yourself.
  • Read inspiring material every day.
  • Find someone or something to love unconditionally, hopefully yourself.
 
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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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