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

I awoke this morning to a fresh covering of sparkling powdery snow.  It clung to every branch of each tree and hung in clumps on the evergreens.  The snowy carpet was a brilliant white when the sun shone and it disguised every little blemish which had been visible the day before.  It reminded me of when I was struggling with ME/CFS and I would bravely wear my mask of ‘I’m doing ok’ even though I was hard pressed to hold it together.  I had been taught by others that they were not interested in my illness or didn’t understand it or didn’t believe that I had a real physical illness.
 
It drove me to not talk about it.  I had come to flinch at ‘the looks’ whether they were disinterest, confusion or pity.  Unfortunately, I began to only see those people and under value the people closest to me who cared and who understood.  I would sometimes hide my true situation from them as well.
 
It’s hard to stay the course with ME/CFS and work your way back to health by watching your patterns and conserving your energy.  You need a few people to be there with you.  Not a crowd – just a few.  When I finally revealed my true situation to a few close friends, the response was supportive and unburdening for me.  I realized how hard it had been to wear the mask of ‘I’m doing ok’.
 
Take a risk with a trusted friend and let them know how you are truly doing.  Or reach out to someone who already knows and check in.  For a selective few, their support and caring can make a huge difference.   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.  And Guest Blogs are most welcome!

Look for a weekly posting on Tuesdays.  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