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

2/23/2016

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By definition. Everyone who has ever been given the diagnosis of SEID/CFS knows what they don’t have.  It’s a long list of known diseases that have diagnostic tests and treatment plans.  Being given the diagnosis of SEID/CFS means that your healthcare provider has run out of ideas.  They’re stumped.  And depending on how well they know you or how sick you present at your appointments, they aren’t sure whether or not to refer you to a mental healthcare provider.  Based on the conversations I’ve had with physicians, they generally don’t like to give the diagnosis of SEID/CFS.  They would much rather figure out what’s going on with you and have a concrete treatment plan with a positive prognosis.

Some providers are good at partnering with SEID/CFS patients to design a treatment plan, others not so good.  But whether or not you have a working relationship with your provider, you are the one who will manage your SEID/CFS on a daily basis.  You are the one who will keep a daily health log – no groaning please.  You are the one who will observe your patterns.  You are the one who will need to be a lab rat.  You are the one who will oversee your personal case study of one.

To be successful, you need to keep evaluating.  SEID/CFS is your diagnosis.  OK – accept it.  You’re in a waste basket diagnosis that includes many possible diseases which currently are unknown.  So which one do you have?  What’s your version of SEID/CFS?  As you begin to treat the most severe symptoms, you will start to see clearer patterns.  Some symptoms will fade and lesser ones will become more noticeable.  Clues will appear.  Pay attention and keep evaluating.  Are you monitoring your patterns?  Are you beginning to understand your version of SEID/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

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SEID/CFS Irony – Mind Over Matter

2/16/2016

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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 SEID/CFS takes up residence.  I don’t think that it’s a coincidence that many SEID/CFS sufferers would label themselves as Type A personalities prior to SEID/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 SEID/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 SEID/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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SEID/CFS Sleep Deprivation – Switch to Rejuvenating REM

2/9/2016

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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 SEID/CFS, this can become status quo layered on an illness that already robs you of desperately needed deep sleep.  For SEID/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 SEID/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

SEID/CFS Routine – Each and Every Day After Day

2/2/2016

2 Comments

 
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If I had to pick one word that would describe my successful return to health after struggling with SEID/CFS, it would be monotonous.  Daily record, energy patterns and attitude are close seconds but ultimately the best word is monotonous.  Did I mention monotonous?  It was SO monotonous.  Day after day monotonous.  Are you starting to feel it?  Tedious, lacking in variety, repetitious, monotonous.  The same routine every day.  Monotonous day after monotonous day.
 
At the depths of my struggle, this monotonous routine required me to take a two hour nap twice a day.  Full disclosure – I HATE naps.  I haven’t napped since I was a toddler.  Even then, I am told I was uncooperative during nap time.  For whatever reason, unless I am sick or just come off an all nighter, I am not tired during the day.  Daytime bed rest is like jail for me.  So my monotonous routine required monotonous bed rest.  Even if I wasn’t sleeping, I had to be in bed with my eyes closed.  Yeah, monotonous. 

 
Sometimes it seemed to take an eternity to get to the end of a day.  And what was my reward?  Bed rest.  Monotonous bed rest.  And as my energy started to return, it was even MORE monotonous still following the napping and resting routine.  But it worked.  It all paid off.  So as you study your patterns and find the clues to your version of SEID/CFS, find a way to manage the monotony of repetitious days.  How do you manage the monotony?  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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