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

ME/CFS Pacing – We Totally Get It

6/5/2018

No matter where you live, you may be aware that New England has been dealing with a conga line of cold, rainy weekends since April. It has been a record breaking couple of months. Even the most ‘rain loving’ people around me have had it. And of course, all of this got me thinking about my struggle with ME/CFS.

Like many, the depths of my illness dragged on for about four years. And like many more, it still drags on. We know what it takes to be in something for the long haul. To commit to getting better as a lifestyle however limited. And yes, some of us needed multiple remedial roller coaster rides of push crash cycles – I’m at the front of that line. But we totally get the patience and pacing it takes to reach a goal – for us wellness. And we keep at it, day after day, week after week, month after month and year after year. We are determined to be well again.

This understanding doesn’t entitle me to look down my nose at those around me who are done with the cold and the rain. But honestly, I do a little – just a smidge. Yes, I’m tired of it too but I am not complaining. This is a piece of cake – made of rain - compared to struggling with ME/CFS.

Whenever someone groans about the weather, I listen for a while then smile and say, “Keep Calm and Umbrellas Up”. 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

ME/CFS Gifts – Better Days

4/24/2018

I live in New England where this winter has been weird – warm when it’s supposed to be cold then cold when we expect it to be warm. I’ve had mixed feelings about it. I love the coziness of a cold winter - but not the hassle of storms and hazardous travel. I think most of us are done and ready for spring.

This week we’ve finally had some sunny warm days that reached above 60. I went for a walk and felt all the usual stirrings of spring. Of course, I knew that it wasn’t here to stay but the taste of it was enticing. I remembered back to my ME/CFS years when after a period of intentional good behavior, doing everything I knew about how to get well, I had a really good day. It was so enticing then to start my old life back – to forego all that I had learned in the hope that this was it. It was a gift of one day that could reinforce all my intentions to stay the course or lure me into a false sense of full wellness.

Several times I was suckered in by the gift. But after a few bad turns I got it. By comparison it put so much in perspective. So this is what it feels like to be better and feeling strong! So just as I know that the 60 degree day is only a reminder of the spring to come, back then I had to avoid the pitfall of a wonderful gift of a better ME/CFS day. Revel in its potential to be repeated more often and stay the course of pacing.

How have you reacted to these gifted days? 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

ME/CFS Recovery – A Mine Field of Variables

4/10/2018

If everyone who was suffering with ME/CFS were to write down all of the variables that affect them, it would be a long list. Life in general challenges us but add to that all of the knowns and unknowns of ME/CFS and it can be overwhelming. During the time when I was bedridden with ME/CFS, I must admit that for a good number of my waking hours each day, I cranked over that list. I allowed it to feed on the precious little energy that I had and erode my will to get well.

It was when I finally jettisoned the list and began to focus on one or two variables at a time that my health started to improve. Instead of wandering through the entire mine field where it was certain that one of them would blow up, I carved out smaller areas with a limited scope. Usually this would include a shorter timeframe to focus on and only a couple of life’s issues to act on. It didn’t always work but most of the time, it allowed me to intentionally focus the energy I had on things that were realistically within my reach.

How do you keep yourself within a realistic window? What strategies have worked for you? 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

ME/CFS Rest – Ease and Release

1/30/2018

I’ve been thinking about what rest is. Some would say it’s the opposite of physical action – inaction. Some would say it’s a state – at rest. I think of it as a combination of stilling the body, the mind and the spirit. Without all three, for me, it isn’t true rest.

When I was struggling with ME/CFS, I spent many long periods of time in bed – supposedly at rest. But for many of those hours I was either completely awake or in a semi asleep state. Although my body was horizontal and only moved occasionally, my mind was grinding - either hung up on one particular worrying thought or bouncing all over the subject map. My mind was definitely not resting.

Then sometimes I could accomplish a period of time when my mind was quiet and my body was still but my spirit was low. My attitude and my outlook were down. So I was still draining my energy allowing it to ooze out of me as I sat in a negative place about my situation.

Ultimately, for me, true rest came when my body was still, my mind was at ease and I released the emotionally heavy weight of my situation so I could lift up into a place of real rest. In those moments when I was able to accomplish true rest, I could replenish my energy and take steps toward regaining my health. How do you rest? What are your strategies? 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

ME/CFS Holidays – Gift to Yourself

12/12/2017

It’s thirteen days to go until December 25th and we’re in the midst of many religious and cultural holiday observances. Whatever you celebrate at this time of year, we’re getting to the thick of it and we’re feeling the constraints on time and energy to get it all done. When I was struggling with ME/CFS, this was a critical decision time that determined how my holidays would play out.

Would I choose wisely and slow the pace down so I could feel reasonably well at the height of the holidays or would I keep pushing to the finish line? In my early years of struggling with ME/CFS, it was always the latter. No matter what good intensions I held, invariably I over did and was crashing thru the culmination of our holiday celebrations. It wasn’t until I began to get a taste of feeling better that I understood the importance of stopping the rush of the holidays.

This holiday season, the most important gift you give is the one to yourself. The gift of letting go of most of the Fa La La and napping instead. Watch a favorite movie. Ask a friend to pick up a specific gift item or some groceries while they’re out doing their own shopping. Order online. Linger over a hot cup of afternoon tea. Call your loved ones and let them know that you’re thinking of them and that you’re resting so you’ll be up for the holiday events. The more you give yourself the gift of rest and reasonable pacing, you will actually be giving your family and friends the gift of a stronger and more participatory you during the holidays.

Are you giving yourself the gift of energy for the holidays? 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 my next posting after the New Year. And consider being part of the conversation.

Wishing you and your loved ones a Healthy and Blessed Holiday,

In the New Year, Be Well Again,
Martha

ME/CFS Choices - The Holiday Bustle

11/28/2017

Before I was sick with ME/CFS, the holidays were a blur of activities in addition to the normal work and family commitments. A Healthy person struggled to get it all done.

Then I went through four holiday seasons struggling with ME/CFS. For two of them, I was bedridden for most of each day. As is often the norm for ME/CFS sufferers, I was pretty hard on myself. All I could think of were the special holiday things that my kids and family weren’t enjoying because of me. But I couldn’t do anything about it. So those holidays passed with me needlessly feeling down.

Then came a holiday season when I was feeling stronger – not fully well but better. And of course, true to form, I wanted to make up for the ‘lost holidays’. Lessons can be tough to learn. Gratefully, I had people around me and a voice in my own head that said, “Do only what you enjoy and can handle - let the rest go.”

Now that I am fully well, our holidays are still scaled down and we all like it that way. It’s more like a delightful sampling of what the season offers than a forced and frenzied banquet. We don’t do every activity every year. We switch it out. Our gift giving is mostly donations to charities, Yankee Swaps (even with family) and special consumables (wine, soup mixes, teas, etc). We haven’t sent cards in years. I’m thinking I might send an e-card this year. Maybe…

How do you get through this season without straining your energy limits and pushing yourself into relapses? What do 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

ME/CFS Pacing – Keeping the Beat

11/14/2017

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

ME/CFS Progress – Where’s Your Focus?

10/31/2017

I recently participated in and IEP meeting – Individualized Education Plan – for a young friend. For part of the time, people talked about her successes. But for most of the meeting, people pointed out her weaknesses and where she needed to improve. And understandably, this is the point of the meeting. But I went away feeling that her accomplishments were impressive based on expectation. And there was no place to honor that progress. Of course it got me thinking about my struggle with ME/CFS and the way I could only focus on my weaknesses for a long time.

My first two years of struggling with ME/CFS were all about my failure to succeed at my life. All I thought about was what I wasn’t doing, who I was letting down and how I wasn’t figuring out what had happened to me. My focus was on what was going wrong and how it was my fault. One huge negative focus. Finally, after a horrendous crash, we decided to change our approach to ME/CFS and at the same time to change our focus. We started to move away from how I was failing and to focus on how I was progressing. The focus became centered on what I did that day and how I built on that the next day. Yes I had setbacks but we focused on the patterns that gave me positive results and repeated them.

So how are you making progress toward wellness? Where’s your focus? 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

ME/CFS Progress –Review Your Patterns

9/26/2017

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

ME/CFS/SEID Colored Glasses

7/18/2017

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

For someone with ME/CFS/SEID, 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/SEID 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 and avoid severe relapses? 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