Category: Protocol

ME/CFS Change – New Beginnings

9/4/2018

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 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!

I will be off the grid for the next several weeks. I’m looking forward to the time I’ll be spending away from the distractions of technology however much I love its’ gift of connectedness. Look for my next posting on Tuesday, October 2nd and consider being part of the conversation.

Be Well Again,
Martha

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ME/CFS Repetition – Keep Your Sanity

7/10/2018

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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 third week in July. I can’t remember the last time we had a good 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 Recovery – Trust the Process

5/22/2018

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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 Pacing – Keeping the Beat

11/14/2017

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I was recently playing drums with a small group of drummers and what started with a base rhythm devolved into a less than pleasant cacophony of noise. If you’ve ever sat in on a drum circle, you know exactly what I mean. To solve this problem, the leader needs to lay down a basic simple beat and hold it. It gives everyone a point of reference to play off of and to return to and it keeps the group cohesive. Experienced drummers already know this and learners usually pick it up when the leader points it out. When you’re struggling with ME/CFS, there’s no leader to set the basic beat.

When a large mother drum is present, several people sit around it and hold down a beat – sometimes it’s a heartbeat. It sounds like an actual heart beating – boom, boom, pause. Boom, boom, pause. Just like the line you’d see scrolling across the screen of a cardiac monitor. Two peaks followed by a flatter line. It’s all about the underlying rhythm - the natural pacemaker.

Unfortunately for ME/CFS patients, it’s a challenge to keep the basic beat – the pace that will consistently get us from day to day without being caught up in a push/crash cycle. It’s a matter of fine tuning. Collect data, make observations, find successful patterns – Repeat. Repeat, Repeat, Pause. Repeat, Repeat, Pause. And eventually Repeat your way back to health.

How do you pace to a basic beat? 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/SEID Selectivity – A Time to be Picky

6/27/2017

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I recently took a fresh look around my home and saw a lot of stuff. Much of it felt like clutter. And then there were the boxes. Although I think that we have divested of a lot of material things, we have boxes - in the basement, in the garage, in the closets. I know what’s in some of them but honestly, whatever is in the rest, I clearly don’t need. So of course it reminded me of my struggle with ME/CFS/SEID and how much I was ‘doing’ that wasn’t fruitful personally – things that seemed important at the time but were really just fillers and ‘invented’ priorities by a Type A personality. I needed to let go of activities in my life that I could no longer handle – at least while I was healing.

At the time, I couldn’t image life without some of those activities and I allowed their loss to depress me. For a while, I valued them more than my health. But in time, as I focused on getting well, I let them all go. When I began to see solid improvement, I had the first real opportunity to add one thing back into my recovery plan. What would I chose? What had I missed most that would fit in with my improving energy levels without compromising my progress?

Now, as I look around my home and make choices about what to keep, it’s like clearing everything off the kitchen counter and then making intentional decisions about what to prioritize and put back. And as I experienced back then, I liked the selectivity of what to include in my life. I finally began to see that I needed to be selective - It was definitely a time to be picky. What picky choices are you making? 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

5/9/2017

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ME/CFS/SEID 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/SEID 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/SEID 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

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ME/CFS/SEID New Year - Take a fresh look

1/3/2017

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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/SEID, 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/SEID. 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/SEID, 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/SEID 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/SEID 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/SEID Recovery – It Takes Some Dedicated Time

8/9/2016

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Every once in a while, I drag out my soap box…. Here I go….

I frequently receive emails from people who have been struggling with ME/CFS/SEID for way too long. This is such a cruel disease. And I know that everyone’s situation is different with demands and responsibilities. But recovery from ME/CFS/SEID, at least for me, came at a price. A very high price. I literally gave up two years of my life in order to recover. And, as you already know, I hated every minute of it up until I started to taste how it used to feel to be well. And when I got that taste, I had hope that I could recover. Full disclose: I had to repeat that ‘first taste’ experience three times before I fully understood what I needed to do next which was nothing.

I needed to stick with the protocol and rest. I needed to stay right where I was and continue to do all the self-care that has gotten me that far. And that’s when I truly began to hate the protocol. As I felt better and better, I continued with the restrictive protocol. Ad nauseam.

So here are my questions to you. How long have you been struggling with ME/CFS/SEID? What quality of life are you living? Is there any way that you could arrange your life so you could dedicate one year to only being a Patient? 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/SEID Struggle – Work Every Hour

6/28/2016

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Full disclosure – I have been a Boston Red Sox fan since I was a little girl. I have no idea why the game captured my imagination so young but I got hooked and still am. Like many of the devout, I am used to the highs and lows of my team. Right now, we’re doing well. And of course I’ve been watching the post-game interviews. Without exception the players repeat the same mantra – work every pitch. They remind me of my struggle with ME/CFS/SEID and how I was able to regain my full health.

Like the Red Sox who have approached this entire season with focus on “Every pitch, every out, every inning, every game”, I finally understood after two years of crazy push/crash cycles that I needed to bring my struggle with ME/CFS/SEID to “Every hour, every day, every week, every month.” If I intended to be well again, I needed focus – consistent, every hour focus.
I needed to bring my struggle into the moment and make it the most important factor that effected each decision – everything had to be viewed through the window of my goal to regain my health. And yes, I was blessed with the opportunity to make ME/CFS/SEID my focus every hour. But it was not without deep sacrifices for me and for my loved ones. This path is hard and long. Some days seemed endless. Some days I lost ground and some days I gained.

And like the Red Sox who went from last to first in one year with pitch by pitch focus, I regained my health in two years with hour by hour focus. How are you bringing your struggle with ME/CFS/SEID into each hour of each day? 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
Go Sox!

2 Comments

ME/CFS/SEID Recovery – Challenge and Reward

6/7/2016

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I’ve been enjoying one of the rewards I earned by facing the challenge of ME/CFS/SEID head on and figuring out my version of this cruel disease. I’ve been taking on large garden projects which require digging, hauling and mulching. And I’ve been able to handle the physical work as any healthy person would do. And of course, I’ve thought about my struggle with ME/CFS/SEID each and every day - more than once.

My gratitude for being fully recovered is immeasurable. And yes, I was fortunate enough to have the benefit of a strong daily support group. I had the time to devote to figuring out my version. I had the economic safety net. But most of all, I had patience and a focused priority to get well above all else.

For several years, I did nothing but follow the protocol – every minute, every hour, every day, every month till I was sick of it. Till I hated it. Till I wanted to ignore everything that I had learned and just get back into my life. I was sick of watching others live. I was sick of not being who I could be. I was sick of the comments of others. But I fought every normal urge and just kept plugging away at the protocol. Did I ever cheat? In the beginning, of course I did. But it only got me sicker. So when I finally got serious, I stuck with the protocol relentlessly. And that’s when recovery began to slowly happen.

Yesterday, I planted two new rose bushes. I was a sweaty mess covered with a layer of dirt and I was thinking about how this seemed like a miracle. But it wasn’t. It was the result of lots of sacrifice that on a daily basis I truly hated. But in the long run, it was SO worth it. 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 Change – New Beginnings

ME/CFS Repetition – Keep Your Sanity

ME/CFS Recovery – Trust the Process

ME/CFS Pacing – Keeping the Beat

ME/CFS/SEID Selectivity – A Time to be Picky

Recovery Opinions – Some More Hopeful Than Others

ME/CFS/SEID New Year - Take a fresh look

ME/CFS/SEID Recovery – It Takes Some Dedicated Time

ME/CFS/SEID Struggle – Work Every Hour

ME/CFS/SEID Recovery – Challenge and Reward

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