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ME/CFS Perspective - The Inner Voice

5/28/2019

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

2 Comments

ME/CFS – Are Genetics a Variable?

1/23/2018

0 Comments

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

0 Comments

ME/CFS/SEID Crash Triggers – What Do You Avoid?

6/20/2017

4 Comments

The last few days have been hot and muggy in New England. Summer is definitely here. Over the weekend we were doing some yard work and were working up a sweat. I commented that I wanted to go for a swim and my son remarked that I don’t swim. I only float. From his perspective, it was true. My version of swimming is mostly with floatation – usually a noodle. And I definitely don’t swim strokes over any distance. But it hasn’t always been this way.

Before I struggled with ME/CFS/SEID, I swam laps in a pool every day at lunch or early in the morning if my schedule allowed. Then came ME/CFS/SEID and all that went away. Skip forward several years to when I was finally following the protocol and getting better. I was avoiding push/crash cycles and feeling stronger each month. Then I got the bright idea to try swimming again - major crash. More time passed and I was back on track and feeling stronger. Yes, I tried swimming again – another crash. Full disclosure, I did this three times. What was I thinking? I never tried to swim again. Even after I climbed Kilimanjaro, I was afraid to try swimming again.

My brain is now hard wired to avoid swimming. Even though it makes no sense, somewhere inside me I still fear that swimming will trigger an ME/CFS/SEID crash. I used to think I was crazy for still thinking this. But I came to realize that instinct is important in survival and that I’m not much of a gambler. What crash triggers have you learned? What do you avoid? 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

4 Comments

ME/CFS/SEID Optimism – Brighter Days

3/28/2017

2 Comments

It happens to me every year around the middle 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 has been 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/SEID 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/SEID 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 a weekly posting on Tuesdays. And consider being part of the conversation.

Be Well Again,
Martha

2 Comments

ME/CFS/SEID Apprehension – Letting It Go

3/14/2017

2 Comments

It’s been a challenging couple of weeks for me. Things are settled for now but I know that the future will at some point entail more of the same kind of challenges. And I feel a kind of apprehension about it. Of course it’s reminded me of the feelings that used to affect me when I was struggling with ME/CFS/SEID.

I had tried mightily to not let feelings of anxiety or fear of more bad days get to me. My cognitive brain accepted that I would have to deal with them as I slowly recovered but my emotions and psyche were uneasy – waiting for the signs and body pain that would be the harbinger of a bad day. Sometimes I would allow this anxiety to effect my day even if it was by comparison a reasonable day. It took a great deal of intentional focus to see the positive side of how I was physically feeling. And to ignore the anxious voice inside of me.

The strategy that finally worked for me was planning ahead. During the time I was bedridden, I would plan by the hour. What should I be doing during the next few hours to achieve a good outcome? As I got healthier, I planned by the day. What should my day look like in order to stick to the protocol and have a successful day? Eventually, I was looking at a week and planning a well paced reasonable series of days that generated a positive result. It seems simple but it worked.

How do you let go of the apprehension? 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

2 Comments

SEID/CFS Instincts – Don’t be Fooled

3/29/2016

2 Comments

Instincts are frequently cited as the reason for our survival. And I completely agree that we should follow our instincts as they are right. I think we have an ancient ‘knowing’ that is programmed into our DNA from millennia of learned successes and failures. Anthropologists have documented many of them. And for me, I think we also have this ‘knowing’ at a cellular level. Cravings come to mind. And our bodies demand for rest. But sometimes, as I unfortunately discovered when I was first struggling with SEID/CFS, our instincts can fool us.

Prior to my struggle with SEID/CFS, I was a type A on steroids. It was instinctual with me to solve problems by throwing myself into them with everything I had. I didn’t learn this from those around me. Somehow, I was programmed that way. And with every success, it only reinforced the method. So as I first struggled with SEID/CFS, my immediate instinct was to push through it. And as you all know from your own experiences, this approach completely failed me. While my body was desperately calling for rest, my brain pumped out something that enabled me to push the pace. I reminds me of the impossibly heavy objects that people are able to lift in emergencies. And of course, it was unsustainable. My body finally crashed hard and my brain was forced to relent. Unfortunately this happened more times than I’d like to admit.

So yes, listen to your body’s instincts: Exhaustion, cravings, pain, confusion, etc. and heed the messages. My one caveat is to be careful to filter the messages through the logical part of your brain and ignore the frantic, desperate voice. Even a healthy person can’t lift a car every day. What are your instincts telling you? What messages do you heed in order to recover from SEID/CFS? 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 Instincts – Don’t be Fooled

4/1/2014

8 Comments

As he frequently does, Tim wrote an insightful comment on last week’s blog that got me thinking about instinct. And I completely agree that we should follow our instincts as they are right.  I think we have an ancient ‘knowing’ that is programmed into our DNA from millennia of learned successes and failures. Anthropologists have documented many of them. And for me, I think we also have this ‘knowing’ at a cellular level.  Cravings come to mind. And our bodies demand for rest. But sometimes, as I unfortunately discovered when I was first struggling with ME/CFS, our instincts can fool us.

Prior to my struggle with ME/CFS, I was a type A on steroids. It was instinctual with me to solve problems by throwing myself into them with everything I had. I didn’t learn this from those around me. Somehow, I was programmed that way. And with every success, it
only reinforced the method. So as I first struggled with ME/CFS, my immediate instinct was to push through it. And as you all know from your own experiences, this approach completely failed me. While my body was desperately calling for rest, my brain pumped out something that enabled me to push the pace. I reminds me of the impossibly heavy objects that people are able to lift in emergencies.   And of course, it was unsustainable. My body finally crashed hard and my brain was forced to relent. Unfortunately this happened more times than I’d like to admit.

So yes, listen to your body’s instincts:  Exhaustion, cravings, pain, confusion, etc. and heed the messages. My one caveat is to be careful to filter the messages through the logical part of your brain and ignore the frantic, desperate voice. Even a healthy person can’t lift a car every day. What are your instincts telling you? What messages do you heed in order to recover from ME/CFS?
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

8 Comments

ME/CFS Perspective – Your Consent

8/14/2012

4 Comments

Eleanor Roosevelt

I’ve been lucky to have many teachers and mentors in my life. They’ve come from traditional as well as nontraditional directions. One of my favorites is Eleanor Roosevelt. Recently, I overheard a parent dumping a load of verbal judgment on his child and I started thinking about her famous quote, “No one can make you feel inferior without your consent.” And I was remembering how hard it was when I was struggling with ME/CFS, to ignore the judgmental comments I received about my ‘weakness’. That somehow I was at fault for being sick - that I was choosing to be sick. And that the reason for my continued illness was a lack of will or just plain laziness. I remembered how much that hurt being flung at a ‘work till you drop’ Type A personality like me.

When I finally understood that the path back to health needed to be a case study of one, that freed me from the burden of the ‘holier than thou’ judgments. But it took conscious effort to ignore – to not give my consent for others to label me as inferior.

Another quote of Eleanor’s helped me through that time as well. “Do one thing everyday that scares you.” It took a great deal of courage to let go of so much in order to focus on getting well again.

How do you deal with the attitude of those who look at you and see weakness? Or even laziness? What are your strategies for withholding your consent? 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

4 Comments

ME/CFS Pacing - Truths and Miss Queues

5/8/2012

2 Comments

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

2 Comments

ME/CFS – Are Genetics a Variable?

1/10/2012

6 Comments

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

6 Comments

ME/CFS Perspective - The Inner Voice

ME/CFS – Are Genetics a Variable?

ME/CFS/SEID Crash Triggers – What Do You Avoid?

ME/CFS/SEID Optimism – Brighter Days

ME/CFS/SEID Apprehension – Letting It Go

SEID/CFS Instincts – Don’t be Fooled

ME/CFS Instincts – Don’t be Fooled

ME/CFS Perspective – Your Consent

ME/CFS Pacing - Truths and Miss Queues

ME/CFS – Are Genetics a Variable?

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