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

ME/CFS New Year - Take a fresh look

1/5/2021

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 Choices - The Holiday Bustle

12/8/2020

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We are all struggling with the pandemic caused by Covid-19. For many, the virus has touched them directly, either through illness of loved ones, even death, or being at daily risk in an essential job. For many, the economic hardships are threatening the survival of their families. For many, the separation from loved ones is causing emotional and mental health problems, especially for our isolated elderly. We are all trying to make sense of the conditions of the pandemic which have become the new normal.

And now, we are in the midst of the holidays which are usually a blur of activities in addition to the normal work and family commitments. But this year, we are being asked to forgo much of it. To stay in our limited circles in order to stop the spread of the virus. To ease up the burden on our hospitals, to even save lives.

For those of us who have spent many holiday seasons struggling with ME/CFS, this request isn’t as hard to accept. We get the pace that necessitates staying home. We understand the sadness of isolation. We have lived with forgoing much of the holidays.

This year, everyone is in a similar place for a completely different reason. And although Zoom is getting old, it is a way to connect that we didn’t have in the past.

How are you planning to spend the holidays? What are you paring back? What will 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 Attitude – Find Thankfulness

11/24/2020

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When I sat down to blog about Thanksgiving, I looked at what I had written last year. I can’t do a better job of expressing how I feel about this holiday and struggling with ME/CFS at the same time. So here it is again:

Thanksgiving traditionally generates clichés about thankfulness. The mantra basically goes like this: Be thankful for what you DO have, not what is missing. Most of us would agree with this outlook. It is better to focus on the positive. But it isn’t easy to do especially when you’ve been struggling with ME/CFS for a year or for 20 years.

When I was sick, I would allow myself to indulge in some self pity around this time of year but I knew that was totally unproductive and a waste of what little energy I had. I would then get irritated with myself for my self-centered attitude and so just added more negativity to my load. But it can be unfair to expect a person who is struggling with a body that can’t handle normal activity to be upbeat, positive and ultimately thankful.

So as the rest of the world around me went about their daily routines, I would look at my life and try to find something to be thankful for. Mostly, I focused on the few people around me who understood what I was going through and supported me in large and small ways. I made a point to tell them how much I appreciated what they did.

And after I let go of the negativity toward myself, I realized that I needed to appreciate the work I did all year long. The work of getting well again. Sticking to the snails pace recovery, following the protocol when I didn’t want to and being present in my life in whatever way I could realistically handle.

Are you finding things to be thankful for? 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.

And for you and all of your loved ones,
I wish you a warm and Bountiful Thanksgiving,
Be Well Again,
Martha

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ME/CFS Brain Fog – Write it Down

11/10/2020

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One morning recently, I woke up to thick fog blanketing the yard. It was so dense that it reminded me of a night last spring when I was driving home and the lingering snow on the ground was a few inches thick. With temperatures in the mid 30s, there was a wall of thick fog hanging over the snow and drifting across the roads. In high school science class I learned that sublimation is the transformation of physical matter directly from a solid to a gas without ever becoming a liquid. So the night fog was the result of the frozen snow skipping over water and going straight to cloud vapor. And it reminded me of the frustrating brain fog I had when I was struggling with ME/CFS.

Kind of like the snow, my brain seemed to skip over the natural fluidity of conversations - the ebb and flow of ideas exchanged with one another. Or the transitional thoughts needed to get from a concern to a possible course of action. Concrete thoughts wouldn’t develop and instead slowly leaked out of my head like a balloon with a pin hole. I couldn’t remember what someone said a moment after they said it. It seemed to dissipate into the air without ever registering in my brain.

After denying the reality of my memory struggles for awhile, I finally came around and tried to cope with it. I started to write things down as I spoke with people and it helped me to keep the train of thought going. And when I was trying to think through something on my own, I also wrote it down. It felt stupid at first, but when it began it help, I appreciated the sense of accomplishment that resulted.

How are you coping with brain fog? What strategies have you developed? 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 Routine – Each and Every Day After Day

10/27/2020

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If I had to pick one word that would describe my successful return to health after struggling with ME/CFS, it would be monotonous. Daily record, energy patterns and attitude are close seconds but ultimately the best word is monotonous. Did I mention monotonous? It was SO monotonous. Day after day monotonous. Are you starting to feel it? Tedious, lacking in variety, repetitious, monotonous. The same routine every day. Monotonous day after monotonous day.

At the depths of my struggle, this monotonous routine required me to take a two-hour nap twice a day. Full disclosure – I HATE naps. I haven’t napped since I was a toddler. Even then, I am told I was uncooperative during nap time. For whatever reason, unless I am sick or just come off an all nighter, I am not tired during the day. Daytime bed rest is like jail for me. So, my monotonous routine required monotonous bed rest. Even if I wasn’t sleeping, I had to be in bed with my eyes closed. Yeah, monotonous.

Sometimes it seemed to take an eternity to get to the end of a day. And what was my reward? Bed rest. Monotonous bed rest. And as my energy started to return, it was even MORE monotonous still following the napping and resting routine. But it worked. It all paid off. So, as you study your patterns and find the clues to your version of ME/CFS, find a way to manage the monotony of repetitious days. How do you manage the monotony? 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 Progress –Review Your Patterns

10/6/2020

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For many, Fall is the gateway through which we return to familiar patterns after the long warm days of summer. Hopefully, we’ve spent some time in the outdoors and had a break or two from the norm. If you’re struggling with ME/CFS, the norm is the inability to function as a healthy person. So, the long days of summer may have only served to put an exclamation point on your disability and frustration which could have resulted in a push-relapse cycle…

As we return to normal patterns, it is obviously subjective. What a typical day looks like for one ME/CFS patient, can be completely different for another. But as each patient looks back over the past year, it would be wonderful to see improved health since last Fall and disappointing to feel worse. Which applies to you or those you care for? How do you get on the improved track?

For some, patterns are the key - unique patterns for each patient. Specific to each patient and situation. The key to recognizing patterns is keeping a detailed health log. As resistant as some may be to this idea, it is a focused way to get a handle on your unique version of this wastebasket diagnosis of ME/CFS. A patient’s memory is impaired and often useless for holding the train of thought during a conversation. How could the same person hold a week of patterns in his/her head? And then have the recall to see progress over a year?

If you are a patient and you are not keeping a daily health record, start today. Start right now. Get a pad of paper, a spiral notebook, the back of an envelope – just start writing down a brief summary of your day. If you have been keeping a record, what seems to be the most valuable information in your record? What is missing and would help to know? 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 Attitude – What Others Say

9/22/2020

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When you’re struggling with ME/CFS, it can be a daily challenge to keep your own negative attitudes in check. It’s all too easy to fall into the trap of wasting precious energy grinding about the things you can’t do, the thoughts you can’t keep straight and the important people in your life for whom you can’t be present.

It becomes even more challenging when you have to deal with the negative attitudes and insensitive comments of others. One group says ‘you look OK to me’. Then there are the ‘doubters’ who look at you as if you’re either physically lazy or mentally weak. And then you face the curious crowd who seem interested in your illness only to the extent that they want to tell you about themselves or their sick friend. It’s hard to know what to say without being irritated (only to confirm their assessment of your mental weakness) or rude which can alienate people whom you otherwise value in your life.

Fortunately for most, there are a few steadfast supporters, family members or friends, who get it and want to support your path back to health in whatever way they can. And even these caring people can say the most insensitive things at times. When I heard these comments, I donned my writer’s thick skin which I acquired as the result of many tough critiques.

What do you say when people make insensitive comments? Do you react at all? 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 Change – New Beginnings

9/8/2020

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Although the official beginning of Fall will arrive on the Autumnal Equinox, the days after the long Labor Day weekend bring on the feel of the changing season. Although some of us would enjoy an extra week or two of August weather, it’s time. And nature reinforces that with the 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 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

8/25/2020

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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. If I 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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ME/CFS Lost Opportunities? – Just Postponed

8/11/2020

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A few 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 her, 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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<<Previous

ME/CFS New Year - Take a fresh look

ME/CFS Choices - The Holiday Bustle

ME/CFS Attitude – Find Thankfulness

ME/CFS Brain Fog – Write it Down

ME/CFS Routine – Each and Every Day After Day

ME/CFS Progress –Review Your Patterns

ME/CFS Attitude – What Others Say

ME/CFS Change – New Beginnings

ME/CFS Recovery Goal – Our Aim is Off

ME/CFS Lost Opportunities? – Just Postponed

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