Over the weekend I was talking with someone about how people change when they go through a personal struggle that challenges them to their core.  By comparison, other difficulties in everyday life are less stressful and seem easier to handle.  And of course, I began to think about my ME/CFS days and how much I have changed – maybe even gained – in my more robust ability to weather the tribulations of a healthy life.
 
This person didn’t know me when I was sick and I was about to mention my ME/CFS struggle but I hesitated.  The stigma of ‘mental weakness’ or crazy has always been attached to ME/CFS.  Whenever I had told someone that I was once sick with ME/CFS, I would see that association flash across their face.  Suddenly, even though they had only seen me healthy, I was dropped down a few notches in their estimation.  I became less then whole.  Damaged with the potential to be weak or needy.  Maybe even a burden.  So, I hesitated.
 
Then I thickened my skin and plunged forward, knowing that the more we talk about ME/CFS, and the more we engage with the main stream, the better the odds of getting to the answers for this cruel disease.  And as I voiced that I had once been bedridden with ME/CFS, the response was OK.  Better than I expected but it was still tinged with a bit of stigma.  And it renewed my determination to be part of the conversation because so many of those who are struggling with ME/CFS frequently disappear from view.
 
Are you getting the crazy stigma when you talk about ME/CFS?   How are you dealing with it?  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

I was feeling down recently - kind of an internal implosion resulting from too many people and things weighing on me culminating with feeling sorry for myself.  For a period of time I allowed myself to be in that place.  And that was OK because sometimes we need to feel emotions in order to decide what to do about them.  And it gave me a small taste of my lowest points when I was struggling with ME/CFS.
 
I am however, at my innermost core, an optimist and that part of me eventually asserted itself and demanded that I move on.  I was reminded of the Law of Attraction and the theory that by focusing on either positive or negative thoughts, we attract the same energy or results.  The most documented example of this is the placebo effect which produces positive health results in blind medical trials where the patient is only given a simple sugar pill.  Patients are able to think themselves better. I was not aware that there is an equally well documented nocebo effect which produces negative health results in clinical trials where a placebo is used.  People who fear medication or who have a negative medical image can actually cause deterioration in their own health.  Powerful stuff.
 
For me that’s a strong statement about how much control we actually DO have in dealing with ME/CFS.  Once I turned the corner away from blame, denial and anger, and moved forward into solving my ME/CFS puzzle as a case study of one, I began to slowly get better.  And yes, I was actively managing my health every day and it was no accident that the daily scrutiny finally resulted in my return to health.  But my positive attitude directed at my determination to figure out my version of this cruel disease, was a big factor in succeeding despite the long haul.  How do you manage your daily attitude in order to attract positive healing?  What strategies work 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

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 weekly posting on Tuesdays.  And consider being part of the conversation.

Be Well Again,
Martha

It’s a cold rainy day in New England after several warm spring days.  For the middle of April one might expect something different.  But I’ve lived here my whole life and one can always count on the weather to change moment to moment.  So today, as I settled in for a less active indoor day, I started thinking about my struggle with ME/CFS and those rainy days.  One might think that like some people, rainy days would have seemed dreary and sad back then.  But the opposite was true.  Rainy days made me very happy.

Why?  When I was struggling with ME/CFS, sunny warm days made me miserable.  I wanted so much to be out and going about my life.  And lovely days were a tough reminder that I was too ill to participate in my own life – in anyone’s life.  Those days seemed twice as long as normal.  They dragged and dragged and dragged on some more.  Those days were depressing.

I must admit, somewhat ashamed, that cold rainy days made me feel like other people might have their days limited as mine were.  Not with the physical symptoms of ME/CFS but the limitations on mobility.  The restriction of activity and possibly some of the isolation.  I felt like other people were stuck in it with me.  A sort of warped sense of misery loves company.  And this made me happy.  OK, not one of my best moments.

As I began to understand that I needed to get off the ME/CFS roller coaster and focus on a real recovery plan, this weather influenced attitude began to change.  My daily approach to healing became a matter of choice as I was no longer a victim of ME/CFS but rather someone who was on an intentional recovery path.  Nowadays when I’m trapped indoors on cold rainy days, I like to make the best of it and imagine I have lots of company.  And a nap is nice too.  How do you relate to cold rainy days?  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!
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Look for a weekly posting on Tuesdays.  And consider being part of the conversation.
Be Well Again,
Martha

It happens to me every year around the end of March.  Although I don’t see the signs of change in myself yet, one of my window plants catches my notice.  There’s a new vibrancy in its color or maybe even a tiny sprout where a dead leaf had dropped.  Something triggers my attentiveness and before I’ve cognitively made the connection, I’m trimming, repotting and fertilizing all my plants.
 
What my plants have all been responding to, and what I’m also caught up in, are the longer days with brighter light streaming in my windows.  And I think back to my ME/CFS days and remember how hard it was day after day, week after week and month after month to keep my spirits up.  To remember my resolve to keep to the protocol, to allow myself the space to heal, and most importantly to cut myself the mental slack I needed.  The only time I didn’t need to be intentional about being upbeat was when the light began to get noticeably brighter at this time of year.  There’s a reaction to the increasing daylight that we experience on a cellular level.  I’m sure there are reams of scientific studies that have investigated this response but I don’t need to read them.  My sense of renewal and optimism are palpable.  And during my ME/CFS struggle, it was natural to see this NOT as the marking of another year of this cruel illness, but as the beginning of the year when my progress would get me to the next health plateau – the next stage of recovery.
 
I’m hoping that you are able to harness this brighter light and natural source of anticipation to carry you successfully along your path back to wellness.  Please COMMENT 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 on Tuesday April 9th.  And consider being part of the conversation.

Be Well Again,
Martha

We had a light snowfall this week so I went out to shovel the sidewalk.  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 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 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

Over the years I’ve been able to develop a thick skin when it comes to hurtful comments from others about my struggle with ME/CFS.  Dismissiveness or even subtle innuendoes suggesting that my illness was a mental health problem are a reality and I’ve come to deal with them as part of the package of ME/CFS.  But recently, someone whom I thought ‘got it’, belittled my illness with a wave of her hand referring to it as a brief bout with severe depression so just get over it.  REALLY!?!
 
I’ve now got Seth and Amy of SNL zinging their Weekend Update one liners across the video of my mind.  Saying that ME/CFS sufferers are only severely depressed is like saying that ulcers can be cured by thinking pretty thoughts.  REALLY!?!  If ME/CFS patients are mental health cases then MS is a lifestyle choice.  REALLY!?!  If you think that Prozac is the cure for ME/CFS, then I’ve got a bottle of snake oil that will cure your condescending attitude.  REALLY!?!
 
Sometimes humor is the best medicine.  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

When I sat down to blog about Thanksgiving, I looked at what I had written last year.  I can’t do a better job of expressing how I feel about this holiday and struggling with ME/CFS at the same time.  So here it is again:
 
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.
 
Are you finding things to be thankful for?  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.

And for you and all of your loved ones,
I wish you a warm and Bountiful Thanksgiving,
Be Well Again,
Martha

A few summers ago, I spent a weekend with my niece and her young family at the lake.  My grandniece was three and was so much like my daughter was at that age – the bright smile and giggly laugh.  The difference is that I could play with her, dance with her and even pick her up.  When my daughter was a baby, I was in the depths of ME/CFS and couldn’t hold a glass of water let alone a fifteen pound baby.  I missed my daughters’ time as a baby and toddler.  Even when she was three, I was still unable to pick her up or do active play with her.
 
Did I miss out on an experience that I can never get back?  One could look at it that way.  And of course, I can’t get it back with my daughter.  But spending time with my grandniece was such a wonderful gift.  It was like recovering that lost experience.  And my daughter was there too.  She had just turned twenty-two.  It was a joy to see her holding her cousin on her hip and playing with her.
 
If I had tried to ‘do it all’ with my daughter, I know that I would still be struggling with ME/CFS.  It had such a profound hold on me that it took dedicated focus, to the exclusion of all else, to get well - even the joys of my daughters’ babyhood.  I did find ways to enjoy her and be her Mom but they needed to be energetically limited.  And I would do it the same again because now, and for the last eighteen years, I’ve been a full participant in my life, her life and the lives of all my loved ones.  So now I plan to see my grandniece as much as possible and revel in this new opportunity to recover something that was just postponed.
 
Are you balancing choices that might be missed opportunities?  Are you planning ways to recover them later?  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