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© 2012 TSM
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 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 many 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 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
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© 2012 TSM
We had a light snowfall last night so I went out to shovel the sidewalk this morning.  It was only a couple inches of fluffy white so the going was easy.  As I scooped up and tossed each airy load, I began to get a rhythm going.  And of course I started to think about ME/CFS – my daily thankfulness for my return to full health is never far from the front burner.  I had developed two mantras during my struggle back from ME/CFS.  The first was Attitude, Attitude, Attitude.  It took me a long time to finally cut myself some slack about being sick and then about feeling like I was letting my family and loved ones down.  Not to mention dumping my anger at the medical community.

Once I started to accept the reality of my illness and my personal challenges, my mantra switched to what I could actually DO about my situation.  That’s when I took up my second mantra.  So this morning, as I tossed aside the snow, I began to softly, slowly chant, “Pace… Pace… Pace…”  Being attentive to my daily routines, my choices for energy expenditure and reluctantly pulling back on my own reins whether I liked it or not, were key to pacing myself back to health.  Yes - Of course I screwed up sometimes and wanted to kick myself but mostly I was firm in my commitment.  And I did my best to communicate that to others around me.

How are you doing with pacing?  What challenges you the most?  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
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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
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© 2012 TSM
I’ll be completely honest.  I’m not a fan of New Year resolutions because most of us set ourselves up for failure by selecting a goal which is too difficult and all encompassing.  These types of resolutions require the individual to change most of their way of being in the timeframe of an overnight.  Is there anything wrong with challenging ourselves with self improvement?  Absolutely not.  But when you’re struggling with ME/CFS, let’s not add just one more big failure to the pile of reasons why we sometimes grind on ourselves.

Although the patients experience with ME/CFS can differ, there is one consistent thread that I hear from everyone – Helplessness.  This disease persistently beats us down.  With the lack of recognition, with the lack of medical treatment, with the lack of understanding from many of those around us, and with our own self doubts.  It can be daunting.  And in the face of this, it can be easy to allow ME/CFS to control us and to give in.  We forget that there are aspects of this disease that we do have control over.

We control our daily choices about rest, nutrition and supporting our immune systems.  We control our data collection and review of patterns.  We control how we communicate and seek support.  We control our own attitudes and approach to ME/CFS.

I encourage you to start by taking control of just one of these areas of your ME/CFS struggle.  Then over time as you feel confident in that area, add something else.  Slowly, patiently and consistently begin to take back what you can control about ME/CFS.

My wish for all of you is a year filled with step by step success in taking control of ME/CFS.  Where are you going to start?  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
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© 2011 TSM
My apologies for missing my blog last Tuesday but even my hardened 11th grade French teacher would have given me a bye week.  My son had surgery which hospitalized him for six days followed by a readmission due to complications.  During the many days I spent with him wading thru the copious obstacles of our medical system, I noticed all the families who were also spending their holidays in the hospital.  I thought often about how I coped with holidays back in my ME/CFS days.

Basically, I had to abandon all visions of ‘the ideal’ holiday, whatever that meant.  While I was still riding the rollercoaster of denial, my holidays were horrendous push/crash cycles.  Mostly crash.  After I started following the protocol, it was an anguished series of choices to try to stay within my known limits.  Whatever success I had was tinged with a dose of guilt and a tad of anger at the medical system and its failure to unravel the mystery of ME/CFS.  But my holidays did get better as I came to understand my version of ME/CFS and what worked or didn’t.

My son came home last night and we are hopeful that he’s home to stay.  How did you cope with your holidays?  Were you able to manage some balance in your energy expenditure or was it push/crash?  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
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© 2011 TSM
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 can be interpreted through your ME/CFS colored glasses with a dose of brain fog.

 For someone with ME/CFS, 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 and avoid severe relapses? 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
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© 2011 TSM
Before I was sick with ME/CFS, the holidays were a blur of activities in addition to the normal work and family commitments.  A Healthy person struggled to get it all done.

Then I went through four holiday seasons under the constraints of ME/CFS.  For two of them, I was bedridden for most of each day.  As is often the norm for ME/CFS sufferers, I was pretty hard on myself.  All I could think of were the special holiday things that my kids and family weren’t enjoying because of me.  But I couldn’t do anything about it.  So those holidays passed with me needlessly feeling down.

Then came a holiday season when I was feeling stronger – not fully well but better.  And of course, true to form, I wanted to make up for the ‘lost holidays’.  Ha!  Lessons can be tough to learn.  Gratefully, I had people around me and a voice in my own head that said, “Do what you enjoy and let the rest go.”

Now that I am fully well, our holidays are still scaled down and we all like it that way.  It’s more like a delightful sampling of what the season offers than a forced and frenzied banquet.  We don’t do every activity every year.  We switch it out.  Our gift giving is mostly donations to charities, Yankee Swaps (even with family) and special consumables (wine, soup mixes, teas, etc).  We haven’t sent cards in years.  I’m thinking I might send an e-card this year.  Maybe…

How do you get through this season without straining your energy limits and pushing yourself into relapses?  What do you happily forego from the holiday hustle and bustle list?  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
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© 2011 TSM
Thanksgiving traditionally generates clichés about thankfulness.  The mantra basically goes like this:  Be thankful for what you DO have, not what is missing.  Most of us would agree with this outlook.  It is better to focus on the positive.  But it isn’t easy to do especially when you’ve been struggling with ME/CFS for a year or for 20 years.

When I was sick, I would allow myself to indulge in some self pity around this time of year but I knew that was totally unproductive and a waste of what little energy I had.  I would then get irritated with myself for my self-centered attitude and so just added more negativity to my load.  But it can be unfair to expect a person who is struggling with a body that can’t handle normal activity to be upbeat, positive and ultimately thankful.

So as the rest of the world around me went about their daily routines, I would look at my life and try to find something to be thankful for.  Mostly, I focused on the few people around me who understood what I was going through and supported me in large and small ways.  I made a point to tell them how much I appreciated what they did.

And after I let go of the negativity toward myself, I realized that I needed to appreciate the work I did all year long.  The work of getting well again.  Sticking to the snails pace recovery, following the protocol when I didn’t want to and being present in my life in whatever way I could realistically handle.

How are you handling thankfulness?  Are you finding things to be thankful for?  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
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© 2011 TSM
When I was sick with ME/CFS, funding for research was non-existent.  The medical and scientific communities were in denial about ME/CFS being a real disease. Today, there are many research teams following credible leads that may result in successful treatments and possibly cures for some of us in the ME/CFS wastebasket.  Yes, it’s a small fraction of the funds that other diseases receive for research but it’s better than it was.

Chase Community Giving is currently running a contest to determine how they will award up to 3 million dollars to non-profits.  They are asking for people to vote for their favorites.  The voting ends on November 22nd – Tomorrow.  Several ME/CFS organizations are competitive.  Each person gets 10 votes so you can load them up on ME/CFS groups.

Here’s a link to check out Chase Community Giving’s Facebook page.  http://apps.facebook.com/chasecommunitygiving/?ref=ts

Here’s a link for who and how to vote for the ME/CFS groups that are participating.
http://www.facebook.com/notes/xmrv-global-action/how-to-vote-in-the-chase-community-giving-contest/10150398918266797

As of now, The New Jersey CFS Association (http://www.njcfsa.org/) and The Enterovirus Foundation (http://enterovirusfoundation.org/) are in the running.

Please login to Facebook and help to get some funding for ME/CFS research and support groups.  A small grant can make or break these non-profits.  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
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© 2011 TSM
Recently I spent some time with an elderly aunt in her 80’s.  As I watched her slowly move around with the support of her cane, struggle to see clearly and wrestle with recalling conversations, I was thinking about the slow unraveling of health that we face as we age.  And I clearly recalled the similar frustrations that I felt with my low level of functioning when I was sick with ME/CFS.  As it was with me, and I would image would be true of most, my memory of what it felt like to be fully healthy was compromised.  I had been ill with all the fatigue, pain and brain fog for so long that I no longer had an accurate recall of what it felt like for me when I was able to fully function in my old busy life.

And it was also true of my aunt that she had adjusted her memory of what it felt like to be healthy to accommodate her declining functionality.  She would say that she ‘felt well’ even though we could observe this to be inaccurate.

As I gradually began to recover from ME/CFS, I would report to those who asked that I was feeling healthy again.  Then a month would pass and I would have to say to the same person that I had been wrong.  Now I was feeling even better and was healthy again.  Honestly, this uptick in health went on for about six months.  It wasn’t until I was fully well again that I remembered what it was truly like to feel strong and ‘healthy’.

By definition, for ME/CFS patients, the chronic nature of the disease adds to the possibility that we will remember an inaccurate perception of what it feels like to be fully healthy.  How long have you been struggling with ME/CFS?  Do you think your memory of how it feels to be fully healthy is accurate?  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
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