© 2012 TSM
This spring in New England has been a strange cycle of early prolonged hot weather followed by several weeks of cold, damp weather with a few nights below freezing. And like most things that respond to warmth and sunlight, I was out in my garden in early March, clearing the flower beds of winter debris. All of my perennials were sprouted and many already budding out way before their normal timeframe. Now, after a few frosts, I look about and see damage on many of the flowers and shrubs. And of course it reminds me of my successes and failures with pacing when I was struggling with ME/CFS.
It was so difficult to recognize the difference between solid progress where I could take the next step toward recovery and a good day which needed to be repeated at the same level for a while. Of course my hope and emotions were almost always in the ‘this is it’ camp. Unfortunately, most of the time I needed to stay where I was and follow the protocol until this new level of health was consistently repeated. In the beginning, I jumped forward and was almost always rewarded with a set back. Some more severe than others. But over time, I finally began to listen to my body’s call for restraint and to review my daily log for patterns that pointed to whether or not I was ready.
I admit that it took a strong hold on the reins at times when I really wanted to unleash a cantor. Do you struggle with pacing? How do you deal with miss queue days? 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
© 2012 TSM
I live in New England where this winter has been unseasonably warm. I’ve had mixed feelings about it. Growing up with sledding, skiing and building forts, it seems unnatural. I miss the coziness of a cold winter - but not the hassle of ice storms and hazardous travel. The relatively warm weather could be a fluke or a harbinger of climate change. I won’t wander off on that topic…
Last week we had a sunny warm January day that reached 60. I went for a walk and felt all the usual stirrings of spring. Of course I knew that it wasn’t here to stay but the taste of it was enticing. I remembered back to my ME/CFS years when after a period of intentional good behavior, doing everything I knew about how to get well, I had a really good day. It was so enticing then to start my old life back – to forego all that I had learned in the hope that this was it. I was a gift of one day that could reinforce all my intentions to stay the course or lure me into a false sense of full wellness.
Several times I was suckered in by the gift. But after a few bad turns I got it. By comparison it put so much in perspective. So this is what it feels like to be better and feeling strong! So just as I knew that the 60 degree day was only a reminder of what was to come, avoid the pitfall of this wonderful gift of a better ME/CFS day. Revel in its potential to be repeated more often and stay the course of pacing.
How have you reacted to these gifted days? 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
© 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
© 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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