Category: Patterns

ME/CFS Repetition – Keep Your Sanity

7/10/2018

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 Treatment – Working with a Provider

6/12/2018

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By the time most of us received our ME/CFS diagnosis, we had seen several practitioners hoping to find answers as to why we couldn’t regain our strength and energy. Batteries of tests later, we still had no answers. So, we were labeled with ME/CFS/Fibro or whatever it’s called in your region. For most of us, this pronouncement was accompanied by a complete lack of a treatment plan.

We are struggling with a chronic condition whose symptoms include pain, complete fatigue, brain fog and the inability to get restful sleep. From this place of low functioning, if at all, we have no answers and no solid treatment plan. And I don’t consider ‘rest and you’ll feel better’ a treatment plan.

What to do? I flailed around for quite awhile before I started keeping a daily record. But once I started, I began to have specifics that I could document and discuss with my provider. Instead of looking for him/her to provide me with answers to my illness, I provided solid data about my patterns and symptoms. Full disclosure, he never seemed to care much about my energy patterns. But he liked seeing symptoms that he could directly treat. And he loved getting feedback via follow up data to determine if the treatment had any effect. So, I learned to work with him as a partner. It was a completely different relationship than I was used to but it worked for ME/CFS.

Do you have a provider that you’re working with? How do you successfully partner with him/her? 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 Doctors – Working Relationships

2/20/2018

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Finding a doctor or provider who understands ME/CFS can be a challenge. There is still a lot of misinformation and lack of understanding about ME/CFS in the medical profession. And unfortunately, some providers still believe that ME/CFS is not a physical illness. That said, there are some providers out there who DO understand ME/CFS and most importantly, there are many provides out there who know how to work with a patient no matter what the diagnosis.

This puts the burden on us, the patient, to create a working relationship with our providers. How? Step into the role of the provider. They have trained for years to make educated medical assessments based on data collected from medical/family histories, physical examinations, tests and symptoms as described by the patient. Two of these sources rely on the patients memory and capacity to translate how they are feeling into terminology that means something to the provider. For ME/CFS patients, this is a challenge. We inherently are struggling with compromised memories and frequently fail to keep a conversational context for any extended period of time. Add that to the often rushed environment of a doctors office where the face to face time with the physician is limited and mostly directed by the doctor who is asking a lot of questions. Lastly, we have a diagnosis that is non-specific. Each patients version of ME/CFS can be vastly different in presentation other than the standard definitional symptoms. So as patients, we need to be proactive with data. We need to go into the doctors office with an accurate picture of how we have been since our last appointment described in data terms that a doctor can relate to.

A daily health log is key to ensuring a reliable picture of how you are doing. It provides your physician with data driven input. It accurately represents your symptoms and their severity which give your provider specifics on which to focus. Most importantly, it gives you confidence in knowing how you are progressing in real terms that don’t rely on your compromised recollections. Are you keeping a daily log? Do you have a working relationship with your doctor? 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

2 Comments

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

2 Comments

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

2 Comments

ME/CFS Progress –Review Your Patterns

9/26/2017

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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

2 Comments

ME/CFS/SEID Crash Triggers – What Do You Avoid?

6/20/2017

4 Comments

The last few days have been hot and muggy in New England. Summer is definitely here. Over the weekend we were doing some yard work and were working up a sweat. I commented that I wanted to go for a swim and my son remarked that I don’t swim. I only float. From his perspective, it was true. My version of swimming is mostly with floatation – usually a noodle. And I definitely don’t swim strokes over any distance. But it hasn’t always been this way.

Before I struggled with ME/CFS/SEID, I swam laps in a pool every day at lunch or early in the morning if my schedule allowed. Then came ME/CFS/SEID and all that went away. Skip forward several years to when I was finally following the protocol and getting better. I was avoiding push/crash cycles and feeling stronger each month. Then I got the bright idea to try swimming again - major crash. More time passed and I was back on track and feeling stronger. Yes, I tried swimming again – another crash. Full disclosure, I did this three times. What was I thinking? I never tried to swim again. Even after I climbed Kilimanjaro, I was afraid to try swimming again.

My brain is now hard wired to avoid swimming. Even though it makes no sense, somewhere inside me I still fear that swimming will trigger an ME/CFS/SEID crash. I used to think I was crazy for still thinking this. But I came to realize that instinct is important in survival and that I’m not much of a gambler. What crash triggers have you learned? What do you avoid? 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

4 Comments

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 Flip Flops - One Week Later

4/4/2017

2 Comments

In complete contrast to last week, we’re experiencing darker days with drizzle and rain for a bit. Temperatures have dropped into the mid-forties and it’s dank. Break out the heavy sweaters and raincoats. Many of us have been driven indoors. Time to put on the kettle and linger over a steaming cup of tea. Of course this all reminds me of my roller coaster days when I was struggling with ME/CFS/SEID.

A brief energy high would devolve into a long low. No real explanation – just overdoing. And the magic pattern of ‘just right’ seemed so elusive. When had I crossed the line into ‘too much’? Was it this or that? When should I have stopped and rested? Was there a signal that I missed? There was always lots of time to crank thru the failure questions when I was in a long low.

So just as the weather forecasters only get it right a fraction of the time, so do patients struggling with ME/CFS/SEID. What do the most successful forecasters have in common? Data, data, data and patterns, patterns, patterns. You know where this is going. If you don’t have a health log, get started. If you have one but you’ve been lax at recording, get back to it.

And if you’re a dutiful daily data gatherer then sit down with it and mine it for every clue it holds. 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/SEID New Year - Take a fresh look

1/3/2017

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/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

4 Comments

<<Previous

ME/CFS Repetition – Keep Your Sanity

ME/CFS Treatment – Working with a Provider

ME/CFS Doctors – Working Relationships

ME/CFS New Year - Take a fresh look

ME/CFS Pacing – Keeping the Beat

ME/CFS Progress –Review Your Patterns

ME/CFS/SEID Crash Triggers – What Do You Avoid?

Recovery Opinions – Some More Hopeful Than Others

ME/CFS/SEID Flip Flops - One Week Later

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

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