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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 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 Emotions - Droughts and Deluges

6/30/2020

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Early summer weather in New England can vary dramatically day to day. This year is no exception. The normal spring rains which enable the flowering of bulbs and perennials have been alternating with oppressive dry summer like heat waves. Cold heavy rain for days followed by sun baked days approaching 95 degrees. Last week the weather forecasters were a buzz about the storms moving up the eastern seaboard laden with needed water. As the front got closer, things shifted to warnings about flooding and washouts. And of course I began to think about the constant emotional peaks and valleys I experienced when I was struggling with ME/CFS.

As with all emotions that we actively fight to contain, they are held at bay by intentional shoring up with periods of overspills which always seem to be triggered unexpectedly. The cruelty of ME/CFS only serves to amplify the intensity of these highs and lows. My first year was full of frustration with the medical community that labeled me as a head case. With few exceptions I was looked upon as ‘mentally weak’ and in need of therapy. After a period of permitting that negativity to cling to me, I finally rejected it. But I was still left with a pattern of extremes where sometimes the skies would dump a deluge of emotions and I would struggle to tread water. After climbing out of that, I would experience a period of emotional drought when I could stay focused on the protocol and the slow but observable progress toward getting well again.

This focus helped me to eventually steer away from emotional lows and to avoid riding the drought and deluge roller coaster. How do you shore yourself up? 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 Hope – Paired with a Wellness Plan

5/19/2020

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While I was in the depths of my struggle with ME/CFS, I had the opportunity to be seen in a Boston clinic where I thought they were familiar with ME/CFS. The first doctor I saw there, after my complete lab work up and physical exam, was truly unhelpful. He told me that there was nothing physically wrong with me and that I should go home and “have hope”. At that moment, he was the recipient of all the rage about having ME/CFS that was pent up inside me. His eyebrows may still be singed.

When I finally started working with another doctor at that clinic, and treating myself like a case study of one, I began to see slow but real progress. It was then that I opened up to a collaboration of hope paired with a wellness plan. As I worked through my physical illness and worked with my daily patterns, I also began to work on my attitude. Prior to ME/CFS, I was an optimist by nature. But ME/CFS had tainted my outlook. It was beyond frustrating to be struggling with a physical illness that almost no one understood or even acknowledged to be real. So, I began an intentional effort to raise my spirits and have some hope for recovery. As I look back now, this was only possible because I was beginning to see glimmers of physical progress and I had determined to devote my immediate future to being well again.

I understood that hope without a focused effort to be physically well is equally as ineffective as a wellness plan without hope. For me, they needed to be paired. How do you balance your physical recovery plan with your outlook? 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 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

10/29/2019

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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 this morning before the heat cranked up, 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 Answers – Look Within

8/27/2019

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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 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 Stages – Resist Rushing to the Finish

4/2/2019

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Several years ago, I was part of a committee charged with building an outdoor labyrinth at our church. We worked on this task for over four years. It was, at times, so frustrating to try to continue despite the many obstacles that were thrown in our path. There were moments when I had the urge to construct a quick ‘midnight’ labyrinth that would suddenly appear the next morning. But, of course, that would have been a weak effort, not fully sound and would not have lasted very long before degrading back into something unsustainable. The parallels with ME/CFS are unmistakable.

When I was struggling with ME/CFS, I would begin to make progress. I would actually be able to handle a trip to the grocery store. I was elated! And afterward, there was no crash. Yahoo! This was it. I could taste the satisfaction of recovery and being back to my old self. Followed by another day of moderate activity. Still feeling good. And then, in a rush, I would pick up the pace and get back to my old ways. We all know what happened next. Full plunge crash - and feeling worse than ever. I was not fully well and could not sustain the pace before degrading back into ME/CFS. Full disclosure, I’m a bit embarrassed to say, I did this several times. Several times! What was I thinking? I just wanted it SO bad, that I would rush to the finish.

Then the day had finally come, after years of planning, winning over the congregation and having a contractor lay a solid foundation of compacted crushed stone with a final layer of heavy, screed sand, we assembled the labyrinth. Led by our committee and supported by a hard working army of volunteers, we laid out the intricate pattern of stones, cutting some as necessary, to form the paths of the labyrinth. It looked beautiful and was solid underfoot. It has lasted a long time - only because we didn’t rush to the finish. We kept to the consistent, detailed pace. It was a wonderful milestone - excuse the pun. But even then, we were not done. The contractor returned and compacted the surface to ensure that all the stones stayed in place. Then they filled all the gaps with polymer sand to lock the stones together. They regraded up to the edge with loam and reseeded so the grass would regrow around the labyrinth. And we all know how long it takes for grass to grow and fully take hold. After all these years, it still looks great.

If you’re struggling with ME/CFS, please resist the urge to rush to the finish. It is SO tempting. But resist you must. How do you deal with keeping to your successful pace? What are your strategies? 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.

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

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

Be Well Again,
Martha

4 Comments

ME/CFS Reality – Commit to Being A Patient

10/2/2018

2 Comments

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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<<Previous

ME/CFS New Year - Take a fresh look

ME/CFS Recovery Goal – Our Aim is Off

ME/CFS Emotions - Droughts and Deluges

ME/CFS Hope – Paired with a Wellness Plan

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

ME/CFS Answers – Look Within

ME/CFS Goals – Celebrate Each One

ME/CFS Stages – Resist Rushing to the Finish

ME/CFS Recovery - Every Day Counts

ME/CFS Reality – Commit to Being A Patient

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