Category: Health

ME/CFS Gifts – Pace Yourself

10/16/2018

I’ve been thinking a lot about pacing - for myself, for my family, for the seemingly swirling world around me. Are we goal driven or just driven? Are we actually going anywhere? Do we arrive? Are we missing the whole point of the journey itself by never slowing down? When I was struggling with ME/CFS, I was forced to slow down. For a time, I was forced to completely stop.

It wasn’t until I began to recover, slowly but surely, that I also began to understand the ‘gift’ of being forced to slow down. Not that I recommend ME/CFS as a good path to gaining perspective on pacing your life but it was how I got the message. Making choices and pacing have become part of my new way of being. I do smell the roses now.

If you worry about what you’re missing as you struggle with ME/CFS, this quote will make you smile.

"Slow down and everything you are chasing will come around and catch you.” John De Paola

It reminds me of a Saturday morning cartoon where a dog is chasing a cat around in a circle. The cat steps off to the side and just watches the dog who continues to run around the circle. I can remember the road runner doing this to wile e coyote too.

Although ME/CFS is not the preferred method for receiving the ‘gift’ of pacing, it is the way we’ve received it. Open it up and appreciate the message. How are you pacing? 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 Reality – Commit to Being A Patient

10/2/2018

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I recently received an e-mail from a someone who has been struggling with ME/CFS for several years. Like many of us, he has been given the ‘go home and have hope speech’, has gone to the high-priced medical clinic to no avail, and has been treated by compassionate practitioners who haven’t been able to help him either.

Now, he’s as sick as he was at the beginning. Square One. SO Frustrating. And SUCH a familiar story. So many of us have gone this route of exploring every path we can think of knowing that we have a real physical illness. And only making small inroads. Glimmers of hope that eventually fade. And often, we find ourselves back at Square One.

If you’ve read my book, you know that when I got back to square one that was when we decided to turn me into a lab rat. I literally spent a year in bed on a fixed schedule no matter how I was feeling. I allowed myself to increase my activity - in very small increments - only when I had a solid period of time without any problems. This was in many ways torture for a type A like me. But I stuck to the plan because everything else had failed. I stopped looking for the miracle and focused on unraveling the clues to my own version of ME/CFS.

The biggest obstacle I had was allowing me to be sick. To be a patient. To commit to giving up functioning for a while in order to get a normal life back down the road. And I think I needed to waste all the other time on those other paths. It drove home the point that I wasn't getting anywhere going at this half heartedly. Those were wasted years anyway so what was one more year if it paid off? I know that this is not an option for many people because of responsibilities. But somehow, it’s important to relinquish our need to find the ‘silver bullet’ and get focused on figuring out how to get well.

How do you deal with the struggle between getting well again and also having a life? 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 Goal – Our Aim is Off

7/17/2018

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If you ask most people who are struggling with ME/CFS what they want, the answer is usually, “I want my life back!” What most aim for is normalcy. The ability to be the person they were before ME/CFS. They want their family life, social life, work life and healthy life back. They want to live again. They don’t want restrictions and pacing. They want the whole ME/CFS nightmare to go away. And I was no different. I searched and searched for the magic cure that would get me from nightmare to full health again.

During that search, I crashed and relapsed so many times that I really can’t number them. It was brutal physically, mentally and emotionally. Honestly, as my daughter would say, I was a hot mess. The truth that I finally discovered is that no one can go from the cruelty of ME/CFS to full recovery in one magic step. Not even two or three or ten. And since I’ve been fully well again and I’ve met others who have fully recovered, not one of them ever found an instant cure. If there was a key piece to their recovery, it was discovered as they recovered – as other symptoms began to receded, it became prominent.

So what’s your recovery goal? Are you ready to get off the crash and relapse roller coaster? For whatever reasons, some of us need to ride it longer than others. When you’ve had enough, reassess your goal and correct your aim. I finally realized that I needed to get to a pace where I could handle things and not get sicker. A pace plateau. Something I could sustain for weeks and not crash. Then I would try a little bit more. I if could handle it, I stuck with it for a long time to ensure that I didn’t get sick. And so on. If I couldn’t handle it, I quickly dropped back a step and settled in for a while. Did I like this snail’s pace? Of course not! I hated it! But I finally got my life back. So where is your aim these days? 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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Immune Support – Who Do We Listen To?

5/29/2018

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Most ME/CFS patients would agree that supporting our immune system is key to a successful path back to health. We recognize that this system is a 24/7 work horse that never rests. The majority of challenges to our person health that we encounter go undetected by us due to the vigilance and vigor of our efficient immune systems. And some researchers support the theory that part of the ME/CFS struggle is due to a compromised or ‘on tilt’ immune system.

So what should ME/CFS patients do to support our immune systems? From my perspective, it’s hard to find definitive information unless it’s followed by an ad for the recommended product. At one extreme are the recognized research groups who won’t commit to anything specific. At the other extreme are the passionate semi-scientific articles extolling the virtues of a ‘total solution’ product. ME/CFS patients find it difficult to sift thru all of this when so much is at stake and brain fog is dulling one’s judgments.

Here's a link to an article from Harvard Law School “How to Boost Your Immune System.” It’s couched but ultimately informative. And it gets us into the supplement discussion again.

For me, eating healthy food loaded with nutrients and getting REM sleep were the highest priority in my efforts to support my immune system as I was working to defeat CFS. What are your strategies? Have you found a combination of things that add up to a healthier immune system? 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 New Year - Take a fresh look

1/9/2018

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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 can you see in your patterns? 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

12/12/2017

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It’s thirteen 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 Energy – Intentional Use

11/7/2017

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I’ve been doing some reflection of late on my priorities as I move into the second half of my life – OK I’m planning on becoming a centenarian but in the real actuarial world I’m way past the halfway mark. So I’m an optimist. There are worse things.

As I look forward, I’m trying to be intentional about what I focus on and how I spend my time. I frequently think about the Annie Dillard quote, ‘How we spend our days is, of course, how we spend our lives.’ When I was struggling with ME/CFS and finally on the right path to unraveling the clues to my own version of ME/CFS, I constantly thought about conserving my energy. Nowadays, in the ME/CFS community, we frequently talk about the energy envelope and how to carefully protect and nurture our energy progress.

What I think we miss in that approach is the opportunity to look forward and make intentional choices about how we will thoughtfully expend what energy we DO have. And not to empty it out. But to be aware of the choices we are making about how we spend our precious energy reserves and how that fits in with our longer term goals unrelated to our being in the midst of struggling with a cruel disease.

I realize that looking beyond the near future is tough for an ME/CFS patient but I think that it can add value and resolve to the work of getting back to health. Do you think about how you’re spending your available energy in terms of what you want to be focusing on once you’re well? Can intentionally using even a small amount of energy in that direction allay some of your frustration with thinking you’re wasting time? 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 Common Ground – Not What Divides Us

10/24/2017

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Our political discourse these days seems to have devolved into a contentious ‘Us and Them’ battle. Anything, no matter how insignificant, that could possibly make the ‘other guys’ look bad becomes fodder for the media to ramp up and exploit for days and weeks. Meanwhile, nothing is getting done. No matter what your political view point, this nasty gridlock is frustrating. I recently read about a ridiculous series of political volleys and it got me thinking about how I sometimes see this same illogic in the ME/CFS medical field.

As patients struggling with ME/CFS day after week after month after year, we are always hopeful that a significant new medical or research break through will be the answer that liberates us from this cruel disease. And I can only imagine how hopeful researchers and medical practitioners can be that they are onto a solution or an effective treatment that will be ‘the silver bullet’. They can seem just as certain that they have the answer and honestly, sometimes severely critical of other ideas being wrong. With resources and money scarce in this economy, it can start to sound a bit like our political discourse. But realistically, we all know that ME/CFS is a waste basket diagnosis. There are many versions of ME/CFS lumped in together. They could all be onto the key to different diseases that could be culled out of the waste basket.

In the meantime, as patients, we need to focus on our common ground and support each other as we struggle to get well. Work to understand our own versions of this cruel disease, follow the clues of our patterns and carefully pace, pace and pace. Have you found any ‘common ground’ strategies to share? 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 Loss – Can be Temporary

10/17/2017

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During my darkest days of struggling with ME/CFS, I mourned the loss of my healthy life. The life that allowed me to run about with endless energy until I was spent, needing only a few nights of solid rest to recover. And I held onto that loss for a while allowing it to further deepen my mood and draw precious energy from what little I had. It was sometimes combined with resentment and a bit of self-blame enabling a solid blow to my psyche. Fortunately, this was not a place I could live in for long.

As I began to understand that my medical practitioners, although most were well intentioned, had no clue what was wrong with me, I knew that it was going to be a hard road back to a healthy life. And for me, it wasn’t an option not to try. I could not accept this loss of my healthy life as a permanent chronic condition although that was the opinion I received over and over. OK, I readily admit that I’m an optimist at heart and stubborn as well.

As I began to treat myself like a case study of one, the healing started, slowly - literally, painfully slow. And it wasn’t until I was fully well that I began to find others who had also fully recovered. Unfortunately, ME/CFS is so stigmatized that even former patients don’t talk about it. So despite the pervasive message that patients don’t fully recover from ME/CFS, it’s not true. ME/CFS can be temporary. 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 Nutrition - Avoid Junk

10/10/2017

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Ever since we were kids, we’ve been told by nutritionists to eat healthy food. The various pyramids and food groups have come and gone but the message has been the same. And there’s really no mystery to it. Eat healthy food. When I was struggling with ME/CFS, I paid attention to everything I ate once I understood the need to feed my recovering dis-eased body.

Our biggest road block to following this simple adage is discipline. In our consumer driven economy, there’s a mega agricultural and food business that wants us to consume a lot of unhealthy cheap stuff that’s profitable. And they have the market control to make it easy for us to acquire and eat their stuff and harder to get something different. So the first challenge is to PLAN to eat healthy food. This may sound simplistic but if I’m hungry and there isn’t anything healthy to eat, I go for the shelf with the packaged food. And sometimes, even when I have healthy food in the house, I don’t feel like preparing it. Make a salad? Sometimes I’m just too tired. So as simple as it sounds to eat healthy food, we have to work at it. And when you’re struggling with ME/CFS, every ounce of energy is precious. So you need to decide to allocate some of your limited supply of energy toward providing your body with the healthy food it needs to generate even more energy. Once you look at it that way, it’s a cliché of win-win.

So what’s healthy food? This is a personal decision in terms of what you know to be true about your metabolism. In today’s culture, many people are vegetarian or vegan. Some observe various restrictions in their diets that have made a huge difference in their health – gluten free, sugar free, etc. Whether you need to be more or less restrictive can be a matter of experimentation or testing. But whatever you do, as you work your way back to health, be sure to only put positive, healthy food into your system. Don’t eat negative food – like soda and copious sweets - that your body will have to spend precious energy clearing and processing. Plan to eat healthy food. What are your strategies for eating healthy? 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 Gifts – Pace Yourself

ME/CFS Reality – Commit to Being A Patient

ME/CFS Recovery Goal – Our Aim is Off

Immune Support – Who Do We Listen To?

ME/CFS New Year - Take a fresh look

ME/CFS Holidays – Gift to Yourself

ME/CFS Energy – Intentional Use

ME/CFS Common Ground – Not What Divides Us

ME/CFS Loss – Can be Temporary

ME/CFS Nutrition - Avoid Junk

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