Category: Health

ME/CFS Self-Care – Knowing Our Limits

4/19/2022

Lately I’ve been thinking a lot about self-care. And it got me thinking about what we know about our limits and what we do for others knowing that we will exceed those limits. Our wish to please the people we care about and to do for them somehow overrides all we’ve learned about self-care and especially everything we know about recovery from ME/CFS.

I was reminded of a book I first read in my twenties when I was babysitting - “The Giving Tree” by Shel Silverstein. Maybe you’re familiar with it. On first reading, I thought it was a lovely story about love and what a parent will give selflessly to a child. At the time I saw it from the viewpoint of a child thinking about my mother and her love for me. The next time I read the book, I was a parent myself and I was reading to my child. My fond memory of the book was dashed as I turned each page and read how the main character, a tree, gave and gave and gave to ‘the boy’ until she was nothing but a lifeless stump. And even then, she still gave by letting the now aged boy sit on her.

Healthy people often struggle with self-care choices. As ME/CFS patients we make daily decisions about self-care – energy levels, rest needs, symptom management and recovery protocols. And despite all we have learned, we somehow ‘decide’ to push ourselves too far for our loved ones. Who are we fooling? How do we keep within our limits? How do we communicate honestly with our loved ones? How do we show our love without suffering a set back? 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 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

4 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 New Year - Take a fresh look

1/5/2021

5 Comments

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

5 Comments

ME/CFS Distractions – Stay on Plan

6/9/2020

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I had a plan for the last two weeks but it didn’t play out the way I’d envisioned. Honestly, I can’t remember how things got so off track. Maybe I was trying to juggle too much or maybe it was the reality that too many variables were in play. I was truly over ambitious. Of course, this reminded me of when I was struggling with ME/CFS and it took so long for me to finally get focused on the plan – the single focus plan.

During the beginning of my struggle, I was riding the rollercoaster of push/crash. I had no consistent plan for managing my illness. Each day was a question mark. How was I going to do today? How would I feel? And this lack of planning only made me feel worse. Then I finally understood that all the distractions of life – all of the activities – were keeping me from getting well again. I needed to ignore the distractions and focus on saving my energy and using it with discretion. I needed to stay with the plan.

So the warmer weather is here. The summer will be filled with activities. It will be a time that pushes our wellness plans to the limit. What are your strategies for staying on plan? 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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Recovery Opinions – Some More Hopeful Than Others

11/12/2019

2 Comments

ME/CFS patients seem to be firmly in either the ‘can’ or ‘can’t’ recover camps. As one might guess, most of the opinions can to be related to whether or not each has been able to recover. And then there are the rest: fence sitters who are hopeful and want recovery to be possible.

For me, I keep coming back to what I feel is so unfair about this ME/CFS diagnosis. The fact the even though thousands of patients get this label, they actually don’t all have the same disease. So using the same treatment and approach, two patients can have completely different outcomes. Or one has great success and the other minimal improvement. Yes, I believe that ME/CFS patients can recover. Can they all recover using the same treatment? No. Can they recover using the same protocol and strategies? Call me crazy but my answer is yes.

My training as a health professional drilled into me two things: first, despite all the marvelous progress that medicine had made over the last century, we still only know and understand a small portion of the intricacies of the human body. Second, the way that we learn things is to collect data, hypothesize, test, evaluate and then collect more data, etc.

Personal data collection (yes, I keep harping on this) and successful strategies seem to be the way out for many. Have you developed any strategies that work for you? 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 Goals – Celebrate Each One

5/21/2019

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The last couple weeks have been non-stop activity. We have been celebrating a friend’s graduation from college with senior shows, events, special dinners and of course the official commencement ceremony. She has been focused on getting here for the last four years and has been successful due in major part to her focus and undistracted commitment. And of course I’ve been thinking about my struggle with ME/CFS. How grateful I am to be well again and able to fully participate in the celebrations but also because she has succeeded the same way that I succeeded in recovering from ME/CFS.

After struggling for several years, trying everything we heard about and searching for the doctor who could give us the answers to my illness and the magic pill so I could get my life back, we finally realized that there wasn’t an easy answer. So we decided to try a new approach. The long term goal was to be fully well again. But we knew that there were many small goals between the present and my healthy future. We had to string many smaller goals together in order to reach the ultimate wellness goal.

And so it has been with my friend. Over the course of four years, she has set her goals one semester at a time. And for me it was this same step by step approach that finally worked. I broke the whole goal down into reasonable chunks. And as I achieved each goal, we celebrated. I’m not talking parties. Just simple recognition of what it took to get there and acknowledging the progress. This gave me the validation to keep going.

So what’s your next short term goal on the road to wellness? What have you celebrated lately? 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

1/29/2019

4 Comments

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 my next posting on Tuesday, February 12th. And consider being part of the conversation.

Be Well Again,
Martha

4 Comments

ME/CFS Holidays – The Gift of Helping

12/4/2018

0 Comments

Someone asked me what I’d like for the Holidays and honestly I couldn’t think of a thing I needed or wanted. Maybe a technology upgrade but not the typical holiday gift items that one would search for while wandering the mall among the frenzied herds. When I was struggling with ME/CFS, and someone asked what I wanted for the holidays, all I could think of was my health. And of course they couldn’t give me that.

At the time, I don’t remember having the clear thought process to be able to articulate the kinds of ‘gifts’ that would have been truly helpful in supporting my recovery. With hindsight, now I can think of many that would have been much appreciated. In my younger days when I was short on cash, one of my favorite ‘go to’ gifts was the personal gift certificate. I would think of something I could do for the recipient and create a certificate that could be presented to me when the service was needed.

Imagine all the helpful things that people could do for you as you struggle with ME/CFS. Driving to appointment, cooking a meal, mowing, shoveling and walking the dog come to mind. What would you value in a personal gift certificate? What do you wish was in your helping gift? Tell us and then tell those who want to help. 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 Choices - The Holiday Bustle

11/27/2018

3 Comments

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

3 Comments

<<Previous

ME/CFS Self-Care – Knowing Our Limits

ME/CFS Change – New Beginnings

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

ME/CFS New Year - Take a fresh look

ME/CFS Distractions – Stay on Plan

Recovery Opinions – Some More Hopeful Than Others

ME/CFS Goals – Celebrate Each One

ME/CFS Recovery - Every Day Counts

ME/CFS Holidays – The Gift of Helping

ME/CFS Choices - The Holiday Bustle

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