​As the Spring turns to Summer and the seasons continue to change, I’m feeling that the season of blogging is changing as well.  After more than 10 years, I’m taking a hiatus to focus on other writing projects.  The blog will remain posted here with the entire archive available for anyone who is new to ME/CFS or just wanting to review specific topics.

ME/CFS will always be an important part of life for me and I will continue to enjoy hearing from those of us who struggle with its challenges, patients as well as caregivers.  My old email has become defunct (through my own miss steps) so please reach out to me through Martha at MarthaEllenKilcoyne dot com.  If you have already sent messages via my old email, I never received them so please reach out again.

I wish you all the best in defeating ME/CFS!
Be Well Again, Martha


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If you’re interested, I have always loved fiction writing and just self-published my first novel, The Turn of Awakening.  It’s the first book in the Tinaru series and is an engaging blend of magical possibilities, rekindled ancient powers, and loyal sisterhood in a contemporary fantasy.  Here’s the blurb:

Awakening means power and certain peril.
The turbulent energy of Earth, Water, Air, Fire, and Spirit await.
The Tinaru portals are opening…
​
When Bridget indulges her urge to break free from her monotonous existence for an afternoon, she unleashes the tragic memories that she had successfully numbed out.  As she relives her past, Bridget awakens to her family’s Celtic ancestry and a bloodline of empowered Matriarchs.  She must choose whether or not to embrace her prophesied potential to master the Craft of The Tinaru, an ancient skill to wield the elements of Earth, Water, Air, Fire, and Spirit.  This magical world exists alongside her everyday reality but is invisible to the uninitiated who are known as the Kerku.  Will she return to her safe, mundane Kerku life or step into the magical and treacherous struggle to control the elements?  Can she find loyal companions along the Tinaru path who will help defend her against jealous, formidable saboteurs who threaten her existence?  Will she find love again and who is the Voice?

The series continues with The Turn of Seeking: Book Two of the Tinaru due out in 2024 followed by The Turn of Beginning: Book Three of the Tinaru.
Available on Amazon, Barnes and Noble, and at your local bookstore.
For more information, check out my website www.MarthaEllenKilcoyne.com.

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 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!

Consider being part of the conversation.

Be Well Again, Martha

It’s twelve days to go until December 25th and we’re in the midst of many religious and cultural holiday observances.  Whatever you celebrate at this time of year, we’re getting to the thick of it and we’re feeling the constraints on time and energy to get it all done.  When I was struggling with ME/CFS, this was a critical decision time that determined how my holidays would play out.
 
Would I choose wisely and slow the pace down so I could feel reasonably well at the height of the holidays or would I keep pushing to the finish line?  In my early years of struggling with ME/CFS, it was always the latter.  No matter what good intensions I held, invariably I over did and was crashing thru the culmination of our holiday celebrations.  It wasn’t until I began to get a taste of feeling better that I understood the importance of stopping the rush of the holidays.   
 
This holiday season, the most important gift you give is the one to yourself.  The gift of letting go of most of the Fa La La and napping instead.  Watch a favorite movie.  Ask a friend to pick up a specific gift item or some groceries while they’re out doing their own shopping.  Order online.  Linger over a hot cup of afternoon tea.  Call your loved ones and let them know that you’re thinking of them and that you’re resting so you’ll be up for the holiday events.  The more you give yourself the gift of rest and reasonable pacing, you will actually be giving your family and friends the gift of a stronger and more participatory you during the holidays.
 
Are you giving yourself the gift of energy for the holidays?  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 my next posting after the New Year.  And consider being part of the conversation.
 
Wishing you and your loved ones a Healthy and Blessed Holiday,

In the New Year, Be Well Again,
Martha

When you are struggling with ME/CFS, it’s hard to see anything else.  ME/CFS controls your energy, your schedule, your choices, your physical comfort, your day, your night and your outlook.  Everything you consider is be interpreted through your ME/CFS colored glasses with a dose of brain fog.
 
It’s a necessity.  It’s a survival mechanism.  It’s reality.  And fighting this reality is fruitless.  Just more squandered energy and risked relapses.
 
Remembering that we have restrictions eventually becomes second nature.  And as much as it totally stinks, it can develop into the way forward.  Acceptance of this second nature or inner ME/CFS voice can bring rewards.  Better choices.  Better days.  Beginning to experience better weeks.
 
For me personally, it took several knock down relapses before I understood this dreaded voice.  Some days I wanted to throttle it.  The message was one that I didn’t want to hear.  But slowly, eventually, I began to listen.  Do you listen to the cautionary messages of your inner voice?  Are you learning to pace yourself better?  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 monthly posting.  And consider being part of the conversation.

Be Well Again,
Martha

Although the official beginning of Fall will arrive on the Autumnal Equinox, the days after the long Labor Day weekend and the sighting of a morning school bus bring on the feel of the changing season.  Although some of us would enjoy an extra week or two of August weather, it’s time.  And nature reinforces that with the cooler nights and comfortable daytime temps.  When I was first sick with ME/CFS, I would grind on myself about another season come and gone – wasted – while I languished in bed.  I was still caught up in the desperate search to find someone who could cure me.
 
Then I finally began to realize that there wasn’t a silver bullet – even now, I’m sad that there isn’t – and that I needed a new approach.  A change - A new beginning.  I had been doing the same things over and over again and expecting a different outcome – as we all know, that’s the definition of insanity.  And yes, anyone would get a little insane if they knew they were physically ill but no one could or would provide some answers.
 
Many of us find change to be outside of our comfort zones.  But change is the way forward for many of life’s challenges.  ME/CFS is no exception.  It wasn’t until I took a hard look at myself and my specific version of ME/CFS that I began to heal and work my way back to full health.  Soap box – Are you keeping a daily journal?
 
What change will you bring this Fall to your approach to 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

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

There’s an endless fence that runs along the edge of our yard.  The mower can’t get the weeds that grow close to it so not being fond of weed whacking, we’ve been watching them grow and grow.  After discussing how unsightly they had become, we decided to dig up the weeds along the fence and mulch.  You probably know where this is going.
 
After three hours of digging, pulling, hauling and mulching, we had completed four sections.  We were sweaty, caked with dirt and tired.  My son observed that the fence was so long that it didn’t feel like we made any progress for all the work we’d done.  Of course, it reminded me of my struggle with ME/CFS and the days that I felt the same way about how slow my recovery seemed to be.  Some weeks, I didn’t think I was any closer to being well again despite all my efforts at following the protocol and ‘doing the right things’.
 
Standing at the fence, it was my turn to say, “Don’t look at how far we have to go, look at how far we’ve come.”  That’s what my advocate said to me when I was struggling with ME/CFS and couldn’t see the improvements in my health.  It was helpful to hear, “six months ago, you had to sit during a shower and someone had to wash your hair because you couldn’t hold your arms up over your head for that long.”  It was true.  Six months later, I could take a shower standing up.  OK, I had to rest before and after but it was progress.
 
So, we finished eight more sections in our third round of digging and mulching.  We still have a long way to go – not quite half way yet but what we’ve finished looks great.  And when you think about the long path to recovery from ME/CFS, remember to look at how far you’ve come.  Are you seeing progress?  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