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

ME/CFS Change – New Beginnings

9/21/2021

With the arrival of the Autumnal Equinox, we truly begin to feel the changing season. Although some of us would enjoy an extra month of August weather, it’s time. And nature reinforces that with cooler nights and comfortable daytime temps. When I was first sick with ME/CFS, I would grind on myself about another season come and gone – wasted – while I languished in bed. I was still caught up in the desperate search to find someone who could cure me.

Then I finally began to realize that there wasn’t a silver bullet – even now, I’m sad that there isn’t – and that I needed a new approach. A change - A new beginning. I had been doing the same things over and over again and expecting a different outcome – as we all know, that’s the definition of insanity. And yes, anyone would get a little insane if they knew they were physically ill but no one could or would provide some answers.

Many of us find change to be outside of our comfort zones. But change is the way forward for many of life’s challenges. ME/CFS is no exception. It wasn’t until I took a hard look at myself and my specific version of ME/CFS that I began to heal and work my way back to full health. Soap box – Are you keeping a daily journal?

What change will you bring to your approach to 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 postings on Tuesdays and consider being part of the conversation.

Be Well Again,
Martha

0 Comments

ME/CFS Lost Opportunities? – Just Postponed

8/3/2021

2 Comments

Several summers ago, I spent a weekend with my niece and her young family at the lake. My grandniece was three and was so much like my daughter was at that age – the bright smile and giggly laugh. The difference is that I could play with my grandniece, dance with her and even pick her up. When my daughter was a baby, I was in the depths of ME/CFS and couldn’t hold a glass of water let alone a fifteen pound baby. I missed my daughters’ time as a baby and toddler. Even when she was three, I was still unable to pick her up or do active play with her.

Did I miss out on an experience that I can never get back? One could look at it that way. And of course, I can’t get it back with my daughter. But spending time with my grandniece was such a wonderful gift. It was like recovering that lost experience. And my daughter was there too. She had just turned twenty-two. It was a joy to see her holding her cousin on her hip and playing with her.

If I had tried to ‘do it all’ with my daughter, I know that I would still be struggling with ME/CFS. It had such a profound hold on me that it took dedicated focus, to the exclusion of all else, to get well - even the joys of my daughters’ babyhood. I did find ways to enjoy her and be her Mom but they needed to be energetically limited. And I would do it the same again because now, and for the last eighteen years, I’ve been a full participant in my life, her life and the lives of all my loved ones. So now I plan to see my grandniece as much as possible and revel in this new opportunity to recover something that was just postponed.

Are you balancing choices that might be missed opportunities? Are you planning ways to recover them later? 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 Apprehension – Letting It Go

7/6/2021

0 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.

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 affect 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

0 Comments

ME/CFS Answers – Look Within

6/8/2021

2 Comments

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

2 Comments

ME/CFS Healing – The Challenging Last Phase

5/18/2021

2 Comments

Just recently I received an email from an ME/CFS patient who has been recovering and has reached a better level of functioning but has stopped progressing. This is a story that we are all too familiar with. Many of us have reached that level but can’t seem to get to the next and often last phase of full recovery. I am not an exception. I spent several rounds in ‘Almost There’ territory myself. The first few being miserable failures where I could see and feel the possibility of full recovery and I dashed to what I thought was the sure finish line. We are all too familiar with that story too.

Yes, I crashed and was worse than before each time. Did I learn from this? Not at first. After two of these devastatingly disappointing setbacks, I got the message. I needed to be as careful and as intentionally paced in the last stretch as I was in the first few when my body’s messages were clearer and easier to read. It took great restraint to succeed in making a full recovery. But I made it.

There is a prevalent message in the ME/CFS culture that patients have to learn to live with ME/CFS. According to the accepted mantra, no one fully recovers. This is SO not true. Yes, there are many different dis-eases mixed up in our cruel ME/CFS wastebasket diagnosis. But many patients do fully recover - they just don’t talk about it. But that’s a topic for another blog. My point is that the last phase of recovery is so personally challenging. If it was easy, we’d all be fully well. It takes even more focused attention and ‘case-study-of-one’ perspective because the clues, symptoms and patterns are much more subtle.

Where are you in your recovery? 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 Support – Talk About What has Happened to You

4/27/2021

2 Comments

I often hear from people struggling with ME/CFS who feel alone and isolated. Their efforts to stay connected are stifled by their limited energy and their inability to explain ME/CFS. We’ve all been there. And for many of us, despite the fact that we deal with ME/CFS every day, we don’t really understand it.

When I was sick, I didn’t know how to tell people what had happened to me. The official definition of ME/CFS didn’t help. It’s a group of vague symptoms that occur for 6 months or more. It’s not even a disease – it’s a syndrome. And when I was able to be up and around, I didn’t look sick. People didn’t see me on the days when I was bedridden and unable to function normally.

I did make an effort to explain what was happening to me and thought that I had been successful with a few of those closest to me. I didn’t realize until after I wrote my book how many people never understood despite my efforts to explain. One friend came to me in tears after she read my book, apologizing for not knowing how sick I had been.

Make an effort to talk about your ME/CFS struggle. If you have a copy of my book or others about ME/CFS, share it. Ask others to read it. There are many online personal accounts of struggles with ME/CFS. Share the ones that match your own experience. Make every effort to communicate what has happened to you. Have you had any successes? 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 Progress – Where’s Your Focus?

4/6/2021

0 Comments

I recently participated in and IEP meeting – Individualized Education Plan – for a young friend. For part of the time, people talked about her successes. But for most of the meeting, people pointed out her weaknesses and where she needed to improve. And understandably, this is the point of the meeting. But I went away feeling that her accomplishments were impressive based on expectation. And there was no place to honor that progress. Of course it got me thinking about my struggle with ME/CFS and the way I could only focus on my weaknesses for a long time.

My first two years of struggling with ME/CFS were all about my failure to succeed at my life. All I thought about was what I wasn’t doing, who I was letting down and how I wasn’t figuring out what had happened to me. My focus was on what was going wrong and how it was my fault. One huge negative focus. Finally, after a horrendous crash, we decided to change our approach to ME/CFS and at the same time to change our focus. We started to move away from how I was failing and to focus on how I was progressing. The focus became centered on what I did that day and how I built on that the next day. Yes I had setbacks but we focused on the patterns that gave me positive results and repeated them.

So how are you making progress toward wellness? Where’s your focus? 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

0 Comments

ME/CFS Optimism – Brighter Days

3/16/2021

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 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 a weekly posting on Tuesdays. And consider being part of the conversation.

Be Well Again,
Martha

2 Comments

ME/CFS Feng Shui – How Does Your Energy Flow?

2/23/2021

5 Comments

I was recently rearranging the furniture in my family room in order to accommodate a new door. I also just wanted a new look without buying new furniture. As I began to move things around, I was surprised at how different the same things could look and function just by rearranging them. The energy in the room changed too. It felt airier and brighter – it flowed better. Of course this got me thinking about ME/CFS and how poorly my energy flowed.

For most of the first half of my struggle with ME/CFS, I didn’t regulate my energy at all. I burnt up whatever I had then crashed. There was no pacing. There was no intension to plan my day around what I could reasonably handle. And most important, there was no progress toward getting better. The opposite was true. I was getting worse.

Once I decided to take more control of my ME/CFS, my energy flow changed dramatically. Instead of the abrupt go, go then stop, stop, stop, I began to use my energy reserves at a slow but steady pace. Much like the familiar Tortoise and Hare story, I was slowly getting back to wellness one day at a time. And over a long period of time I got there. Sadly, I’m guessing that I left a few Hares behind still trapped in the cruelty of ME/CFS.

I’m sitting in my newly rearranged family room as I write. What a difference. The energy is flowing easily - not rushed or stopped up. How are you managing your energy flow? Have you embraced your tortoise? 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

5 Comments

ME/CFS Recovery – Trust the Process

2/2/2021

0 Comments

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

0 Comments

<<Previous

ME/CFS Change – New Beginnings

ME/CFS Lost Opportunities? – Just Postponed

ME/CFS Apprehension – Letting It Go

ME/CFS Answers – Look Within

ME/CFS Healing – The Challenging Last Phase

ME/CFS Support – Talk About What has Happened to You

ME/CFS Progress – Where’s Your Focus?

ME/CFS Optimism – Brighter Days

ME/CFS Feng Shui – How Does Your Energy Flow?

ME/CFS Recovery – Trust the Process

Join Our Community
Enter your email address to
follow this blog.

For Books, Supplements, Sleep aids and more

Archives

Categories

Join Our CommunityEnter your email address tofollow this blog.

Archives

Categories

Join Our Community
Enter your email address to
follow this blog.