CFS Blog - ...DEFEAT Chronic Fatigue Syndrome: ...............................................................You don't have to live with it

ME/CFS Perspective - The Inner Voice

10/18/2022

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 monthly posting. And consider being part of the conversation.

Be Well Again,
Martha

ME/CFS Answers – Look Within

6/8/2021

Several decades ago everyone was wearing buttons. It was the rage at the time and we Americans totally obliged. I was slow to the party. There really wasn’t something so important that I wanted to assert it everywhere I went. Then I saw a button that called to me. It simply said – Begin Within. Yes, this was a perspective that I knew well and would want to impart to all. Skip forward to last week when I was rummaging thru a drawer and found it. I was thinking about how this simple wisdom was the key to my struggle with ME/CFS.

It wasn’t until I stopped looking for answers from others and looked within. That’s where I finally found the answers. Of course, they weren’t spelled out in big letters. They were hidden in my version of ME/CFS. I had to do the work to find them but they were there. Once I got on track with my daily record, the answers started to slowly surface. Not in days or weeks, but months and years. It took patience and pacing but it all started when I understood that I needed to – Begin Within.

Have you discovered some important clues to your recovery by beginning within? What strategies have worked for you? 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

ME/CFS – Are Genetics a Variable?

1/21/2020

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

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

ME/CFS Attitude – Stilling the Voices

7/3/2018

Everyday ME/CFS sufferers deal with choices: The ‘energy envelope’ as it’s referred to nowadays. The emphasis is placed on how much energy you have, what you MUST handle today and what you can postpone or just let go of altogether. This approach refers almost exclusively to physical energy expenditure.

When I was sick, physical energy conservation was a primary concern for me. But I came to realize over time that emotional and psychological energy were even more important. Doesn’t make sense? Here’s how it would go for me.

During the times when I was ‘resting’ and making well balanced decisions about my physical energy, my mind was still active. Almost racing along despite the brain fog, I kept sifting through things like a Virginia Woolf stream of consciousness passage on speed. And despite my best efforts to be upbeat and positive about my situation and progress to date, I would eventually wander down the self questioning and negative path of doubt. And then would come the damaging and harsh list of everything that I was failing at because of ME/CFS.

For me, this was exhausting. And debilitating. So over time I learned to still my mind. Beating myself up mentally wasn’t changing anything except eating up precious energy that I needed for the long haul.

So after you fend off the insensitive comments of others, how do you look upon yourself? Do you fester over your situation? How do you still the negative voices? 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

ME/CFS Recovery – Trust the Process

5/22/2018

People use the word trust a lot. I’m not sure if they really understand its meaning. I recently had some sparks fly between me and someone I was working with on a project who is also a good friend. We were both surprised by the sudden eruption but I told her it was OK because I trusted her. I know her good intentions and the stress she’s feeling because her name is on the project. And it reminded me of my struggle with ME/CFS when I was riding the daily roller coaster despite my efforts to follow the protocol.

On days when I was on schedule and feeling like I was managing my energy, getting rest and doing ‘the right things’, it was easier. On days when I felt lousy and nothing seemed to be going according to plan, it was horrible. Those bad days could do me in if I allowed myself to stay in that frustrated, down place. I finally came to understand that I had to trust the process of recovery. It’s easy to trust the process when you’re having a ‘good’ day. The real test of trust comes when you’re having an ‘awful’ day.

So, on those awful days, I had to steer my frustration and depression back into trusting the process. Of course, you have to have a process to place your trust in. My process was my protocol with the daily record as the anchor. It served not only as the grounded center of my work to solve my version of ME/CFS but it was an anchor for my sanity.

We all know too well how much fodder ME/CFS serves up for self bashing and depression and just ‘giving up’. The process was my way of turning that negative energy into positive action to get well. I placed my trust in that process even on the ‘bad’ days. Do you have a process you can trust? 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

ME/CFS Recovery – A Mine Field of Variables

4/10/2018

If everyone who was suffering with ME/CFS were to write down all of the variables that affect them, it would be a long list. Life in general challenges us but add to that all of the knowns and unknowns of ME/CFS and it can be overwhelming. During the time when I was bedridden with ME/CFS, I must admit that for a good number of my waking hours each day, I cranked over that list. I allowed it to feed on the precious little energy that I had and erode my will to get well.

It was when I finally jettisoned the list and began to focus on one or two variables at a time that my health started to improve. Instead of wandering through the entire mine field where it was certain that one of them would blow up, I carved out smaller areas with a limited scope. Usually this would include a shorter timeframe to focus on and only a couple of life’s issues to act on. It didn’t always work but most of the time, it allowed me to intentionally focus the energy I had on things that were realistically within my reach.

How do you keep yourself within a realistic window? What strategies have worked for you? 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

ME/CFS/SEID Colored Glasses

7/18/2017

When you are struggling with ME/CFS/SEID, it’s hard to see anything else. ME/CFS/SEID controls your energy, your schedule, your choices, your physical comfort, your day, your night and your outlook. Everything you consider can be interpreted through your ME/CFS/SEID colored glasses with a dose of brain fog.

For someone with ME/CFS/SEID, 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/SEID 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 and avoid severe relapses? 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

ME/CFS/SEID Apprehension – Letting It Go

3/14/2017

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

ME/CFS/SEID Perspective - The Inner Voice

2/28/2017

When you are struggling with ME/CFS/SEID, it’s hard to see anything else. ME/CFS/SEID controls your energy, your schedule, your choices, your physical comfort, your day, your night and your outlook. Everything you consider is interpreted through your ME/CFS/SEID 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/SEID 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