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

ME/CFS New Year - Take a fresh look

1/4/2022

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 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

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ME/CFS Holidays – Gift to Yourself

12/14/2021

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It’s ten days to go until December 25th and we’re in the midst of many religious and cultural holiday observances. Whatever you celebrate at this time of year, we’re getting to the thick of it and we’re feeling the constraints on time and energy to get it all done. When I was struggling with ME/CFS, this was a critical decision time that determined how my holidays would play out.

Would I choose wisely and slow the pace down so I could feel reasonably well at the height of the holidays or would I keep pushing to the finish line? In my early years of struggling with ME/CFS, it was always the latter. No matter what good intensions I held, invariably I over did and was crashing thru the culmination of our holiday celebrations. It wasn’t until I began to get a taste of feeling better that I understood the importance of stopping the rush of the holidays.

This holiday season, the most important gift you give is the one to yourself. The gift of letting go of most of the Fa La La and napping instead. Watch a favorite movie. Ask a friend to pick up a specific gift item or some groceries while they’re out doing their own shopping. Order online. Linger over a hot cup of afternoon tea. Call your loved ones and let them know that you’re thinking of them and that you’re resting so you’ll be up for the holiday events. The more you give yourself the gift of rest and reasonable pacing, you will actually be giving your family and friends the gift of a stronger and more participatory you during the holidays.

Are you giving yourself the gift of energy for the holidays? 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 my next posting after the New Year. And consider being part of the conversation.

Wishing you and your loved ones a Healthy and Blessed Holiday,

In the New Year, Be Well Again,
Martha

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ME/CFS Choices - The Holiday Bustle

12/7/2021

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Before I was sick with ME/CFS, the holidays were a blur of activities in addition to the normal work and family commitments. A Healthy person struggled to get it all done.

Then I went through four holiday seasons struggling with ME/CFS. For two of them, I was bedridden for most of each day. As is often the norm for ME/CFS sufferers, I was pretty hard on myself. All I could think of were the special holiday things that my kids and family weren’t enjoying because of me. But I couldn’t do anything about it. So those holidays passed with me needlessly feeling down.

Then came a holiday season when I was feeling stronger – not fully well but better. And of course, true to form, I wanted to make up for the ‘lost holidays’. Lessons can be tough to learn. Gratefully, I had people around me and a voice in my own head that said, “Do only what you enjoy and can handle - let the rest go.”

Now that I am fully well, our holidays are still scaled down and we all like it that way. It’s more like a delightful sampling of what the season offers than a forced and frenzied banquet. We don’t do every activity every year. We switch it out. Our gift giving is mostly donations to charities, Yankee Swaps (even with family) and special consumables (wine, soup mixes, teas, etc). We haven’t sent cards in years. I’m thinking I might send an e-card this year. Maybe…

How do you get through this season without straining your energy limits and pushing yourself into relapses? What do you happily forego from the holiday hustle and bustle list? 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 Recovery - Every Day Counts

11/9/2021

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I have a long-term goal. And I make progress in some ways but fall short in others. It’s been a struggle. I made a recent decision to rethink my time management around this goal and remembered a favorite quote from Annie Dillard, “How we spend our days is, of course, how we spend our lives.” And I started to see the parallels between my recent approaches to this new goal and how I had initially reacted to my struggle with ME/CFS. My approach had been inconsistent and I misunderstood the need to apply myself every day to my desire to get well.

So much of what I did in those early days of ME/CFS came out of frustration and anger. But even when I moved past that, I still wasn’t focused on the importance of how I spent each and every day. It took a while before I began to see each day as a building block, which was added to the day before. And so on until I had built up a week of days, then a month of days and eventually many months and finally a year of days. That added up to 365 days in a row of consciously working toward recovering my health. When I finally understood the value and rewards of daily focus, I began to see real progress.

So our lives do reflect how we spend our days. And one day at a time, each and every day, you can make progress toward regaining your health. That’s the only way I was successful. How do you focus on your recovery every day? 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

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ME/CFS Change – New Beginnings

9/21/2021

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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

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ME/CFS Lost Opportunities? – Just Postponed

8/3/2021

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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

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ME/CFS Apprehension – Letting It Go

7/6/2021

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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

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ME/CFS Answers – Look Within

6/8/2021

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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

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ME/CFS Healing – The Challenging Last Phase

5/18/2021

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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

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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

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<<Previous

ME/CFS New Year - Take a fresh look

ME/CFS Holidays – Gift to Yourself

ME/CFS Choices - The Holiday Bustle

ME/CFS Recovery - Every Day Counts

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

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