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ME/CFS Perspective – Your Consent

4/29/2014

7 Comments

 
PictureEleanor Roosevelt
I’ve been lucky to have many teachers and mentors in my life.  They’ve come from traditional as well as nontraditional directions.  One of my favorites is Eleanor Roosevelt. Recently, I overheard a parent dumping a load of verbal judgment on his child and I started thinking about her famous quote, “No one can make you feel inferior without your consent.”  And I was remembering how hard it was when I was struggling with ME/CFS, to ignore the judgmental comments I received about my ‘weakness’.  That somehow I was at fault for being sick - that I was choosing to be sick.  And that the reason for my continued illness was a lack of will or just plain laziness.  I remembered how much that hurt being flung at a ‘work till you drop’ Type A personality like me.

When I finally understood that the path back to health needed to be a case study of one, that freed me from the burden of the ‘holier than thou’ judgments.  But it took conscious effort to ignore – to not give my consent for others to label me as
inferior.

Another quote of Eleanor’s helped me through that time as well.  “Do one thing everyday that scares you.”  It took a great deal of courage to let go of so much in order to focus on getting well again.


How do you deal with the attitude of those who look at you and see weakness?  Or even laziness?  What are your strategies
for withholding your consent?  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

7 Comments

ME/CFS Doctors – Working Relationships

4/22/2014

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Picture© 2014 TSM
Finding a doctor or provider who understands ME/CFS can be a challenge.  There is still a lot of misinformation and lack of understanding about ME/CFS in the medical profession.  And unfortunately, some providers still believe that ME/CFS is not a physical illness. That said, there are some providers out there who DO understand ME/CFS and most importantly, there are many provides out there who know how to work with a patient no matter what the diagnosis.

This puts the burden on us, the patient, to create a working relationship with our providers. How?  Step into the role of the provider.  They have trained for years to make educated medical assessments based on data collected from
medical/family histories, physical examinations, tests and symptoms as described by the patient.  Two of these sources rely on the patients memory and capacity to translate how they are feeling into terminology that means something to the provider.  For ME/CFS patients, this is a challenge.  We inherently are struggling with compromised memories and frequently fail to keep a conversational context for any extended period of time.  Add that to the often rushed environment of a doctors office where the face to face time with the physician is limited and mostly directed by the doctor who is asking a lot of questions.  Lastly, we have a diagnosis that is non-specific.  Each patients version of ME/CFS can be vastly different in presentation other than the standard definitional symptoms.  So as patients, we need to be proactive with data.  We need to go into the doctors office with an accurate picture of how we have been since our last appointment described in data terms that a doctor can relate to.

A daily health log is key to ensuring a reliable picture of how you are doing.  It provides your physician with data driven input.  It accurately represents your symptoms and their severity which give your provider specifics on which to focus.  Most importantly, it gives you confidence in knowing how you are progressing in real terms that don’t rely on your compromised recollections.  Are you keeping a daily log?  Do you have a working relationship with your doctor?  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

0 Comments

ME/CFS Personalities – The Research

4/15/2014

4 Comments

 
Picture© 2014 TSM
On a recent blog (4/1/14) Donna raised the question about personalities and ME/CFS.  Do we have traits in common that are part of the ‘syndrome’?  We’ve all heard that ME/CFS patients are usually Type A personalities defined as competitive, impatient, driven and stressed.  For many, the anecdotal evidence supports this association.  I’m a classic example of a Type A.  And you’ll find blogs, articles and endless fodder on the internet attesting to this viewpoint.  But
does the research support such a link?

I found three studies that examined the personalities of ME/CFS
patients – let us know if you have found others.


The first, “Personality and Perfectionism in CFS” confirms a personality link. 
http://www.tandfonline.com/doi/abs/10.1080/08870440802403863#.U02NwtfD-po

The second, “CFS and DSM-IV Personality Disorders” concludes that there is no link. 
 http://cfids-cab.org/cfs-inform/Cfsdepression/courjaret.etal08.pdf

The third, “Personality Features and Personality Disorders in CFS”, offers a ‘maybe or maybe not’ association. 
 http://www.ncbi.nlm.nih.gov/pubmed/20664306

Not addressing the flaws in the research, that’s a solid ‘don’t know’.  As ME/CFS patients, we’ve gotten used to the ‘don’t know’ territory.  Our diagnosis is a question mark.  The causality is a question mark.  The treatment is a question mark.  And, of course, our personality’s part in contributing to our dis-ease is a question mark.  Status Quo.

But hard data or not, for me, the path to recovery required that I change my personality.  Being a type A and recovering from ME/CFS didn’t mix. I had to not only slow down my body, I had to slow down my psyche.  This required focused retraining.  How
are you dealing with personality and your struggle with ME/CFS?  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 Supplements – One Combination Doesn’t Fit All

4/8/2014

4 Comments

 
Picture© 2014 TSM
Karen recently shared the lifelong struggle she went through to get to a diagnosis of ME/CFS (see blog 6/11/2013) and, like me, eventually determined that she was suffering with ion channelopathy.  The approach we both used was to unravel the clues that would lead us to the correct ratios of sodium, potassium, calcium and chloride.  The ratios which worked successfully for Karen, were almost the opposite of what worked for me.  So even with the same sub-diagnosis, we needed different treatments.  And of course this got me thinking about common practice today in ME/CFS treatment.

Most providers who see ME/CFS patients recommend a regimen of supplements.   They can include pills, IV, shots and ‘cocktails’.  Patients report a range of results with these methods from revitalizing to ‘maybe it helped.’ 
If you’re seeing a physician who has recommended such treatments, be sure that the ratios and combinations of supplements are based on your metabolism. There are tests and blood chemistries that can be run to get an accurate picture of you and your needs for treatment. Many of these treatments can be expensive and it’s a sacrifice for many to pay for them.  If you’re not feeling measurable improvement, revisit your doses and combinations with your doctor.

From my own experience, the first doctor who actually treated me for ME/CFS, relied on his prior experience with ‘patients like me’ and prescribed a similar plan.  Although this first step got me to a healthier plateau, it wasn’t until we figured out, through trial and error, what I specifically needed for supplements that I was able to get on the right road to recovery. Are you taking supplements as part of your recovery plan?  What do you think of their efficacy?  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 Instincts – Don’t be Fooled

4/1/2014

8 Comments

 
Picture
As he frequently does, Tim wrote an insightful comment on last week’s blog that got me thinking about instinct.  And I completely agree that we should follow our instincts as they are right.  I think we have an ancient ‘knowing’ that is programmed into our DNA from millennia of learned successes and failures.  Anthropologists have documented many of them.  And for me, I think we also have this ‘knowing’ at a cellular level.  Cravings come to mind.  And our bodies demand for rest.  But sometimes, as I unfortunately discovered when I was first struggling with ME/CFS, our instincts can fool us.

Prior to my struggle with ME/CFS, I was a type A on steroids.  It was instinctual with me to solve problems by throwing myself into them with everything I had.  I didn’t learn this from those around me.  Somehow, I was programmed that way.  And with every success, it
only reinforced the method.  So as I first struggled with ME/CFS, my immediate instinct was to push through it.  And as you all know from your own experiences, this approach completely failed me. While my body was desperately calling for rest, my brain pumped out something that enabled me to push the pace. I reminds me of the impossibly heavy objects that people are able to lift in emergencies.   And of course, it was unsustainable.  My body finally crashed hard and my brain was forced to relent. Unfortunately this happened more times than I’d like to admit.

So yes, listen to your body’s instincts:  Exhaustion, cravings, pain, confusion, etc. and heed the messages.  My one caveat is to be careful to filter the messages through the logical part of your brain and ignore the frantic, desperate voice. Even a healthy person can’t lift a car every day.  What are your instincts telling you?  What messages do you heed in order to recover from 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

8 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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