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ME/CFS Rest – Ease and Release

1/30/2018

I’ve been thinking about what rest is. Some would say it’s the opposite of physical action – inaction. Some would say it’s a state – at rest. I think of it as a combination of stilling the body, the mind and the spirit. Without all three, for me, it isn’t true rest.

When I was struggling with ME/CFS, I spent many long periods of time in bed – supposedly at rest. But for many of those hours I was either completely awake or in a semi asleep state. Although my body was horizontal and only moved occasionally, my mind was grinding - either hung up on one particular worrying thought or bouncing all over the subject map. My mind was definitely not resting.

Then sometimes I could accomplish a period of time when my mind was quiet and my body was still but my spirit was low. My attitude and my outlook were down. So I was still draining my energy allowing it to ooze out of me as I sat in a negative place about my situation.

Ultimately, for me, true rest came when my body was still, my mind was at ease and I released the emotionally heavy weight of my situation so I could lift up into a place of real rest. In those moments when I was able to accomplish true rest, I could replenish my energy and take steps toward regaining my health. How do you rest? What are your strategies? 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

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ME/CFS – Are Genetics a Variable?

1/23/2018

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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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ME/CFS Plan – Only Keep Your Successful Strategies

1/16/2018

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I learned a new card game over the weekend with a specific deck that contained resource, action and reward cards. The premise of the game was to start with a few cards and then slowly, through the gameplay, build a personal deck of select cards that you thought would be successful in winning the game. On every turn you had to make choices about what to keep, what to acquire and what to aim for. After playing three hands, of course I began to think about ME/CFS and how I had used a similar plan to get well.

After struggling for almost two years, only getting worse, I finally decided that I needed a better plan than my daily ‘how do I feel today?’ approach with the hope that by some miracle I would walk away fully recovered. FYI – I’ve never heard of this actually working for a ME/CFS patient. I decided that I needed a real plan. One made up of a handful of strategies that had actually improved some aspect of my illness. Over time I collected a record keeping strategy, a sleep strategy, a rest schedule strategy, a provider strategy, a nutrition strategy, a supplement strategy and a network for help strategy. Each strategy alone wasn’t going to get me well by itself but as a complementary set of strategies I was able to not only make measureable progress but eventually return to full health.

In essence, I built a personal deck of strategies which I played each day much like the new card game I had learned albeit the stakes were much higher. What strategies have worked for you and are in your personal ME/CFS plan deck? What strategies have you discarded? 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

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ME/CFS New Year - Take a fresh look

1/9/2018

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It’s a hackneyed part of our culture that everyone makes New Year resolutions which we earnestly pursue for one month. Then we return to our old habitual patterns. And every year we resolve not to let that happen yet again. So here we are. For many, it’s a desire to improve one’s health. If you’re struggling with ME/CFS, the stakes and the rewards are much higher than the average person who just wants to look or feel healthier. For us, it’s about reclaiming our lives and our ability to be fully functioning and present – to be well again.

I encourage you to take a fresh look at your version of ME/CFS. Hopefully you are keeping a daily log of your activities, sleeping/resting times, symptoms and medications. Step back and take an objective look at your patterns. Look for periods of wellness. What preceded those periods? Replicate those patterns. Look for periods of ill health or crashes. What preceded those periods? Don’t repeat those patterns. Look at your symptoms. Which are the most debilitating? When do they flair up? How can you treat them in order to short circuit the flair up? Look at your sleeping patterns. How can you improve the quality of your sleep? How can you make your bedroom into your version of slumber heaven – light, sound, comfort and sleep aids. Your daily log needs to be mined for clues as you find your path back to wellness.

If you’ve made progress this year and you’ve managed to shed some of the symptoms that were masking your version of ME/CFS, awesome! As you take a fresh look, you may get a clearer view of the key or central issues which characterize your version of ME/CFS and some insight into new approaches, strategies and clues to your next steps. It was through this methodical periodic review that I eventually unraveled my version of ME/CFS and was able to be fully well again. What can you see in your patterns? What will you focus on in this New Year? 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

2 Comments

ME/CFS Rest – Ease and Release

ME/CFS – Are Genetics a Variable?

ME/CFS Plan – Only Keep Your Successful Strategies

ME/CFS New Year - Take a fresh look

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ME/CFS Rest – Ease and Release

ME/CFS – Are Genetics a Variable?

ME/CFS Plan – Only Keep Your Successful Strategies

ME/CFS New Year - Take a fresh look

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