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ME/CFS Perspective - The Inner Voice

10/18/2022

When you are struggling with ME/CFS, it’s hard to see anything else. ME/CFS controls your energy, your schedule, your choices, your physical comfort, your day, your night and your outlook. Everything you consider is be interpreted through your ME/CFS colored glasses with a dose of brain fog.

It’s a necessity. It’s a survival mechanism. It’s reality. And fighting this reality is fruitless. Just more squandered energy and risked relapses.

Remembering that we have restrictions eventually becomes second nature. And as much as it totally stinks, it can develop into the way forward. Acceptance of this second nature or inner ME/CFS voice can bring rewards. Better choices. Better days. Beginning to experience better weeks.

For me personally, it took several knock down relapses before I understood this dreaded voice. Some days I wanted to throttle it. The message was one that I didn’t want to hear. But slowly, eventually, I began to listen. Do you listen to the cautionary messages of your inner voice? Are you learning to pace yourself better? 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 monthly posting. And consider being part of the conversation.

Be Well Again,
Martha

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ME/CFS Change – New Beginnings

9/13/2022

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Although the official beginning of Fall will arrive on the Autumnal Equinox, the days after the long Labor Day weekend and the sighting of a morning school bus 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 this Fall 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 Stress – Letting Things Go

8/2/2022

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Lately, the amount of stress in my life has been on the rise. It’s primarily a function of too many people and needs pressing for my time and energy as we’re in the midst of multiple life passages. But my situation now is always put into perspective when I think about the level of stress I felt when I was struggling with ME/CFS. By comparison, today’s stress is a stroll on the beach.

My understanding of all the variables that were affecting me during my illness is clearer now that I have my mental focus back along with the long view. One piece that I get now is how much stress I was under in addition to the underlying physical illness that knocked me down (for more info on my version of ME/CFS, check under Further Lessons on the website menu bar). We know that a physically healthy person can be undone by stress. It takes a heavy toll on our biological and nervous systems. When those systems are already ‘on tilt’ and not able to cope with ordinary daily demands as they are with ME/CFS, a heavy load of stress can keep you from recovery. For me, the ME/CFS stress came from every direction – some self inflicted and some imposed by others needs and judgments. It was like a knock out punch when you’re already on your knees.

The only way I was able to recover was to let all the stress go. And to let go of all the stressful things that accompanied it. Of course, I didn’t do this right away. That would have been too easy. Instead I struggled and tried to handle everything for a few rocky, push/crash years before I finally understood how damaging all the stress was in addition to my physical version of ME/CFS.

So today, I make use of my hard won ME/CFS knowledge about stress when I deal with stressors as a healthy person. I do what I CAN do to move my life along and I allow myself some serious slack about all the rest of it – I let things go. How do you deal with the stress as you struggle with 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 Repetition – Keep Your Sanity

7/5/2022

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This summer in New England has seen a lot of hot weather. It hasn’t been two or three days in a row. It’s been a long conga line of hot dry days. Day after day and week after week. And it’s only the second week in July. I can’t remember the last time we had a good long rain. I’m not an AC lover but it’s been on almost constantly. And inevitably when I get into drawn out repetitive situations, I think about my struggle with ME/CFS.

When I finally quit riding the roller coaster after two brutal years and settled into the protocol, it was a long, repetitive, frustrating path. Whenever I looked forward, the repetition seemed to spread out endlessly before me. Like this long hot summer, it didn’t seem like it would ever end. I had to find the courage to settle in. I needed to take it a day at a time. I needed to stick with the recovery plan and work it every day. Honestly, I couldn’t think about how slow the pace was because it drove me crazy. Much like this summer, I don’t think about how many more hot days are coming. I take it day by day. Right now, there’s another gorgeous sunny day outside my windows. The kind I hoped for in the dead of winter.

My best days of dealing with the slow repetitious pace were when I looked over my health log and saw the real progress. I was slowly making my way back to full health. And the proof was right there written in black and white. It was a balm for my sanity. Are you on the slow, repetitious path that the protocol requires? What helps you stay sane? 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 - Look How Far You've Come

6/7/2022

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There’s an endless fence that runs along the edge of our yard. The mower can’t get the weeds that grow close to it so not being fond of weed whacking, we’ve been watching them grow and grow. After discussing how unsightly they had become, we decided to dig up the weeds along the fence and mulch. You probably know where this is going.

After three hours of digging, pulling, hauling and mulching, we had completed four sections. We were sweaty, caked with dirt and tired. My son observed that the fence was so long that it didn’t feel like we made any progress for all the work we’d done. Of course, it reminded me of my struggle with ME/CFS and the days that I felt the same way about how slow my recovery seemed to be. Some weeks, I didn’t think I was any closer to being well again despite all my efforts at following the protocol and ‘doing the right things’.

Standing at the fence, it was my turn to say, “Don’t look at how far we have to go, look at how far we’ve come.” That’s what my advocate said to me when I was struggling with ME/CFS and couldn’t see the improvements in my health. It was helpful to hear, “six months ago, you had to sit during a shower and someone had to wash your hair because you couldn’t hold your arms up over your head for that long.” It was true. Six months later, I could take a shower standing up. OK, I had to rest before and after but it was progress.

So, we finished eight more sections in our third round of digging and mulching. We still have a long way to go – not quite half way yet but what we’ve finished looks great. And when you think about the long path to recovery from ME/CFS, remember to look at how far you’ve come. Are you seeing progress? 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

5/10/2022

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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 Self-Care – Knowing Our Limits

4/19/2022

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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

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ME/CFS Optimism – Spring Lift

3/22/2022

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OK, if you haven’t already guessed, I’m an optimist. And yes, our type can get on peoples nerves when we’re too upbeat. Not to say that optimists don’t have their down times. I’ve had many. Some of those darkest times for me were when I was bedridden with ME/CFS. A disease as cruel as ME/CFS plays games with your mind, your psyche and your emotions. The worst of it for me was that I became someone whom I didn’t recognize. It began to erode my sense of self and my self esteem as well as my physical health.

What I took away from that dark place was the knowledge that this sick ME/CFS person was not the full definition of who I was and who I intended to be again. It became a tool – a negative model of what I rejected. I used it as a springboard from which to move upward again. It renewed my commitment to regain my health – one small step at a time. And each step was a little further away from those lowest points.

Did I do this after my first serious depression? Of course not! Type A personalities are quite certain of their methods and need to be clubbed a bit before they admit to being wrong. But after a few low episodes, the optimist blessedly took control and I finally began the slow yet steady ascent back to health.

How to you handle lows? Can you call on your optimist to move you upward again? 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 – Trust the Process

2/1/2022

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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

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ME/CFS New Year - Take a fresh look

1/4/2022

4 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

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<<Previous

ME/CFS Perspective - The Inner Voice

ME/CFS Change – New Beginnings

ME/CFS Stress – Letting Things Go

ME/CFS Repetition – Keep Your Sanity

ME/CFS Progress - Look How Far You've Come

ME/CFS Recovery - Every Day Counts

ME/CFS Self-Care – Knowing Our Limits

ME/CFS Optimism – Spring Lift

ME/CFS Recovery – Trust the Process

ME/CFS New Year - Take a fresh look

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