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ME/CFS Stress – Letting Things Go

8/2/2022

2 Comments

 
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Lately, the amount of stress in my life has been on the rise.  It’s primarily a function of too many people and needs pressing for my time and energy as we’re in the midst of multiple life passages.  But my situation now is always put into perspective when I think about the level of stress I felt when I was struggling with ME/CFS.  By comparison, today’s stress is a stroll on the beach.
 
My understanding of all the variables that were affecting me during my illness is clearer now that I have my mental focus back along with the long view.  One piece that I get now is how much stress I was under in addition to the underlying physical illness that knocked me down (for more info on my version of ME/CFS, check under Further Lessons on the website menu bar).  We know that a physically healthy person can be undone by stress.  It takes a heavy toll on our biological and nervous systems.  When those systems are already ‘on tilt’ and not able to cope with ordinary daily demands as they are with ME/CFS, a heavy load of stress can keep you from recovery.  For me, the ME/CFS stress came from every direction – some self inflicted and some imposed by others needs and judgments.  It was like a knock out punch when you’re already on your knees.
 
The only way I was able to recover was to let all the stress go.  And to let go of all the stressful things that accompanied it.  Of course, I didn’t do this right away.  That would have been too easy.  Instead I struggled and tried to handle everything for a few rocky, push/crash years before I finally understood how damaging all the stress was in addition to my physical version of ME/CFS.

 
So today, I make use of my hard won ME/CFS knowledge about stress when I deal with stressors as a healthy person.  I do what I CAN do to move my life along and I allow myself some serious slack about all the rest of it – I let things go.  How do you deal with the stress as you struggle with 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 Recovery – A Mine Field of Variables

4/10/2018

2 Comments

 
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If everyone who was suffering with ME/CFS were to write down all of the variables that affect them, it would be a long list.  Life in general challenges us but add to that all of the knowns and unknowns of ME/CFS and it can be overwhelming.  During the time when I was bedridden with ME/CFS, I must admit that for a good number of my waking hours each day, I cranked over that list.  I allowed it to feed on the precious little energy that I had and erode my will to get well.
 
It was when I finally jettisoned the list and began to focus on one or two variables at a time that my health started to improve.  Instead of wandering through the entire mine field where it was certain that one of them would blow up, I carved out smaller areas with a limited scope.  Usually this would include a shorter timeframe to focus on and only a couple of life’s issues to act on.  It didn’t always work but most of the time, it allowed me to intentionally focus the energy I had on things that were realistically within my reach. 

 
How do you keep yourself within a realistic window?  What strategies have worked for you?  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 – Are Genetics a Variable?

1/23/2018

0 Comments

 
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Sometimes realizations ooze quietly into your life and you need to look behind you to actually see them.  Sometimes they arrive via a lightning bolt epiphany.  My latest was the latter.  Over the holidays, my mother visited and we enjoyed many family conversations but the trigger came when she looked at a picture on my desk of her mother (my grandmother).  She hesitated, then asked, “Was that taken before or after she was sick?”  It took my brain cells a moment or two to remember that my grandmother had been sick for many years long before I was born.  She struggled to recover from either malaria or typhoid (my mom wasn’t sure which as she was a little girl at the time.)  “She was in an infirmary for many years because she was so tired and couldn’t handle the family and all the farm work”, my mom continued.  Click.  I then asked, “Mom, weren’t you sick for a long time after your last baby was born?”  “Oh yes, I just couldn’t get my strength back.  I was so tired all the time.  It took a couple years before I got strong again.”  I was the little girl at that time.  Click.  Click.  Click.
 
With a background in the scientific method, I’ve never been one to make gross assumptions based on anecdotal evidence.  During my struggle with ME/CFS, we poured over the published literature looking for clues to my illness and trends in the epidemiological write ups of mass illnesses (there was virtually no research to be found specifically on ME/CFS).  One piece that stuck with us was a gut certainty (now that’s scientific) that genetics had to be part of the puzzle.  Not the whole, but a variable in why my illness progressed as it did when others around me recovered and went back to their normal lives.
 
And as those Clicks got louder, the image of the other sick woman with the swollen belly and dark raccoon eyes in the doctor’s waiting room came back to me.  Our onset and illnesses were mirror images.  So once again, this certainty of a genetic component clicked into place.  This time it had three generations of anecdotes but still no scientific data.

 
Do you have any gut anecdotal feeling about the underlying causes of your version of ME/CFS?  Since it’s a wastebasket diagnosis, we could all be right.  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


0 Comments

ME/CFS/SEID New Year - Take a fresh look

1/3/2017

4 Comments

 
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It’s a hackneyed part of our culture that everyone makes New Year resolutions which we earnestly pursue for one month.  Then we return to our old habitual patterns.  And every year we resolve not to let that happen yet again.  So here we are.  For many, it’s a desire to improve one’s health.  If you’re struggling with ME/CFS/SEID, the stakes and the rewards are much higher than the average person who just wants to look or feel healthier.  For us, it’s about reclaiming our lives and our ability to be fully functioning and present – to be well again.
 
I encourage you to take a fresh look at your version of ME/CFS/SEID.  Hopefully you are keeping a daily log of your activities, sleeping/resting times, symptoms and medications.  Step back and take an objective look at your patterns.  Look for periods of wellness.  What preceded those periods?  Replicate those patterns.  Look for periods of ill health or crashes.  What preceded those periods?  Don’t repeat those patterns.  Look at your symptoms.  Which are the most debilitating?  When do they flair up?  How can you treat them in order to short circuit the flair up?  Look at your sleeping patterns.  How can you improve the quality of your sleep?  How can you make your bedroom into your version of slumber heaven – light, sound, comfort and sleep aids.  Your daily log needs to be mined for clues as you find your path back to wellness. 
 

If you’ve made progress this year and you’ve managed to shed some of the symptoms that were masking your version of ME/CFS/SEID, awesome!  As you take a fresh look, you may get a clearer view of the key or central issues which characterize your version of ME/CFS/SEID and some insight into new approaches, strategies and clues to your next steps.  It was through this methodical periodic review that I eventually unraveled my version of ME/CFS/SEID and was able to be fully well again.  What can you see in your patterns?  What will you focus on in this New Year?  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/SEID Treatment – Working with a Provider

6/21/2016

2 Comments

 
Picture© 2016 TSM

By the time most of us received our ME/CFS/SEID diagnosis, we had seen several practitioners hoping to find answers as to why we couldn’t regain our strength and energy.  Batteries of tests later, we still had no answers.  So we were labeled with ME/CFS/Fibro or whatever it’s called in your region.  For most of us, this pronouncement was accompanied by a complete lack of a treatment plan.
 
So we are left struggling with a chronic condition whose symptoms includ
e pain, complete fatigue, brain fog and the inability to get restful sleep.  From this place of low functioning, if at all, we have no answers and no solid treatment plan.  And I don’t consider ‘rest and you’ll feel better’ a treatment plan.
 
What to do?  I flailed around for quite awhile before I started keeping a daily record.  But once I started, I began to have specifics that I could document and discuss with my provider.  Instead of looking for him to provide me with answers to my illness, I provided him with solid data about my patterns and symptoms.  Full disclosure, he never seemed to care much about my energy patterns.  But he liked seeing symptoms that he could directly treat.  And he loved getting feedback via follow up data to determine if the treatment had any effect.  So I learned to work with him as a partner.  It was a completely different relationship than I was used to but it worked for ME/CFS/SEID.
 
Do you have a provider that you’re working with?  How do you successfully partner with him/her?  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 Recovery – A Mine Field of Variables

6/30/2015

2 Comments

 
Picture© 2015 TSM
If everyone who was suffering with SEID/CFS were to write down all of the variables that affect them, it would be a long list.  Life in general challenges us but add to that all of the knowns and unknowns of SEID/CFS and it can be overwhelming.  During the time when I was bedridden with SEID/CFS, I must admit that for a good number of my waking hours each day, I cranked over that list.  I allowed it to feed on the precious little energy that I had and erode my will to get well.

It was when I finally jettisoned the list and began to focus on one or two variables at a time that my health started to improve.  Instead of wandering through the entire mine field where it was certain that one of them would blow up, I carved out smaller areas with a limited scope.  Usually this would include a shorter timeframe to focus on and only a couple of life’s issues to act on.  It didn’t always work but most of the time, it allowed me to intentionally focus the energy I had on things that were realistically within my reach. 

How do you keep yourself within a realistic window?  What strategies have worked for you?  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 Doctors – Working Relationships

4/22/2014

0 Comments

 
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 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 New Year - Take a fresh look

1/1/2013

2 Comments

 
Picture
It’s a hackneyed part of our culture that everyone makes New Year resolutions which we earnestly pursue for one month.  Then we return to our old habitual patterns.  And every year we resolve not to let that happen yet again.  So here we are.  For many, it’s a desire to improve one’s health.  If you’re struggling with ME/CFS, the stakes and the rewards are much higher than the average person who just wants to look or feel healthier.  For us, it’s about reclaiming our lives and our ability to be fully functioning and present – to be well again.

I encourage you to take a fresh look at your version of ME/CFS.  Hopefully you are keeping a daily log of your activities, sleeping/resting times, symptoms and medications.  Step back and take an objective look at your patterns.  Look for periods of wellness.  What preceded those periods?  Replicate those patterns.  Look for periods of ill health or crashes.  What preceded those periods?  Don’t repeat those patterns.  Look at your symptoms.  Which are the most debilitating?  When do they flair up?  How can you treat them in order to short circuit the flair up?  Look at your sleeping patterns.  How can you improve the quality of your sleep?  How can you make your bedroom into your version of slumber heaven – light, sound, comfort and sleep aids.  Your daily log needs to be mined for clues as you find your path back to wellness. 

If you’ve made progress this year and you’ve managed to shed some of the symptoms that were masking your version of ME/CFS, awesome!  As you take a fresh look, you may get a clearer view of the key or central issues which characterize your version of ME/CFS and some insight into new approaches, strategies and clues to your next steps.  It was through this methodical periodic review that I eventually unraveled my version of ME/CFS and was able to be fully well again.  What can you see in your ME/CFS patterns?  What will you focus on in this New Year?  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 Recovery – A Mine Field of Variables

3/27/2012

2 Comments

 
Picture
© 2012 TSM
If everyone who was suffering with ME/CFS were to write down of all the variables that affect them, it would be a long list.  Life in general challenges us but add to that all of the knowns and unknowns of ME/CFS and it can be overwhelming.  During the time when I was bedridden with ME/CFS, I must admit that for a good number of my waking hours each day, I cranked over that list.  I allowed it to feed on the precious little energy that I had and erode my will to get well. 

It was when I finally jettisoned the list and began to focus on one or two variables at a time that my health started to improve.  Instead of wandering through the entire mine field where it was certain that one of them would blow up, I carved out smaller areas with a limited scope.  Usually this would include a shorter timeframe to focus on and only a couple of life’s issues to act on. 
It didn’t always work but most of the time, it allowed me to intentionally focus the energy I had on things that were realistically within my reach.

How do you keep yourself within a realistic window?  What strategies have worked for you?  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
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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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