Category: Pace

ME/CFS Energy – Intermittent

8/7/2018

An intense sequence of squall lines loaded with lightning and thunder recently swept through our area and I hope that all in its path were safe and able to ride out the storm. We now have our power back for good. During the height of the storm we lost and regained our power intermittently for about 5 hours. And it created uncertainly that kept resolving and then degrading over and over. It reminded me of how my energy waffled during my early struggle with ME/CFS.

Some days I couldn’t walk across the room without pain and exhaustion. Then, miraculously, the next day I could walk down stairs and even wash dishes feeling energized and ‘normal’. Of course, the next day, I struggled just to find the energy to sit up and eat. Then I would feel decent for two days. Then a crash. The negative cycle repeated over and over. It was beyond frustrating, it was infuriating. And I felt helpless and victimized. No one had any answers.

The intermittent energy felt by every patient who struggles with ME/CFS makes it a cruel disease. When I finally started taking control of my energy expenditures, I began the path to recovery. How do you keep your energy levels consistent? 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

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ME/CFS Recovery Goal – Our Aim is Off

7/17/2018

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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. I if 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 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

2 Comments

ME/CFS Pacing – We Totally Get It

6/5/2018

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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

2 Comments

ME/CFS Gifts – Better Days

4/24/2018

3 Comments

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

3 Comments

ME/CFS Recovery – A Mine Field of Variables

4/10/2018

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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

2 Comments

ME/CFS Rest – Ease and Release

1/30/2018

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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

3 Comments

ME/CFS Holidays – Gift to Yourself

12/12/2017

2 Comments

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

2 Comments

ME/CFS Choices - The Holiday Bustle

11/28/2017

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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

2 Comments

ME/CFS Pacing – Keeping the Beat

11/14/2017

2 Comments

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

<<Previous

ME/CFS Energy – Intermittent

ME/CFS Recovery Goal – Our Aim is Off

ME/CFS Repetition – Keep Your Sanity

ME/CFS Pacing – We Totally Get It

ME/CFS Gifts – Better Days

ME/CFS Recovery – A Mine Field of Variables

ME/CFS Rest – Ease and Release

ME/CFS Holidays – Gift to Yourself

ME/CFS Choices - The Holiday Bustle

ME/CFS Pacing – Keeping the Beat

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