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

Dale Miller recently sent me his list and I wanted to share it.  It’s long so I’ve selected twenty to start.  Pace yourself LOL.
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I have been reading your blog for at least a couple of years.   You always have a good thought in there that is valuable in helping me run my life.  I’ve been dealing with these issues for over 15 years.  At different times, I have been in the pit of despair at ever being able to do anything, and at other times, ringing with ecstatic joy at being reborn into a full rich exciting life.  It has taken me a long time, but most days, I have learned to savor each day or hour that I am able to function and show up for my life.
 
Overtime, for me, I have learned that maintaining optimum health is a long haul operation.  My view is that watching out for and caring for my body just came at an earlier time in my life than it does for most people.  Everyone, if they want to operate at their peak has to be careful to eat the right foods, watch over their mental processes. get the right health care, proper rest, good companions, love and care.  We all need/want these things, not just people with a chronic health condition.
 
Take care, Dale
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HEALTH IDEAS
April 19, 2018

• Positive/negative affirmations.  Whenever you say, “I’m tired.  I’m old.”  These are negative affirmations.  You may not believe in affirmations, nevertheless you may be doing negative affirmations every day!
• Develop a tiny interest, something to think about every day.
• Keep the mind off sickness, push the mind over to the interest.
• Audible books for distraction.  Try happy tv or radio.
• Music always playing in the house.
• Dance it out.
• Sing, doesn’t matter if you have a lousy voice, raises the endorphins.
• Find someone or animal to touch.
• Small exercise daily, even if only visualizing.
• Starfish 10x a day.  A starfish is when you raise your arms as high as possible over your head, inhale deeply, then bring your arms down and exhale.
• Understand completely the connection between illness and depression.  If you are long-term ill, you are probably depressed.  Suggest Jonathan Harr’s book, Missed Connections for what to do about it.
• Constantly be looking for something to feel good about.  Roses, flowers, puppies, kittens, dogs.
• Find all the parts of your body which are working.  Chances are, 97%+ is working, notice that and catalogue if you need to.  Focus on what part of the body is working and functioning, not on what is not.
• Slow down, taste everything, smell everything, hear everything.
• Correct your posture constantly.  A slump posture makes you feel bad and breathe shallowly.
• Negativity bias.  This is a bias that all humans have which is a survival skill.  It’s very valuable if there is a saber tiger in your immediate vicinity.  Otherwise, you are trained to always seek the negative.  This is not helpful if you are trying to recover from a chronic illness.
• Control your input, you may have to lose negative friends and family.
• Forgive everyone who has ever wronged you in this life-including yourself.
• Read inspiring material every day.
• Find someone or something to love unconditionally, hopefully yourself.

 
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Look for a weekly posting on Tuesdays.  And consider being part of the conversation.
Be Well Again,
Martha