Category: Pace

ME/CFS Halt – When we had other plans

3/3/2020

Recently we were driving along with a schedule for the day. Then bang. We had a tire blow out. We were able to safely get to the side of road but that one event shot holes in the plan for the day. As we began to assess the condition of our spare tire and whether all the parts of the jack were in the truck, I was reminded of how ME/CFS suddenly forced me to change my plans.

There I was, tooling along with my life plan and then suddenly – bang – I was so ill that I was bedridden. And after going through the seemingly endless screening process, I was diagnosed with ME/CFS. Not great news.

Back on the side of the road, we thought we had everything to change the tire and started in. Then we realized that the jack crank was missing. Great – that meant that we had to raise up the car one half turn at a time. As I knelt by the car, inserting the lug wrench, turning a half turn, removing the lug wrench, moving it back to the other side, then reinserting and turning a half turn – over and over and over – I kept thinking about how ME/CFS required me to invent tools to get well because the normal methods didn’t work. And getting well was agonizingly slow. And repetitive. And repetitive. And really repetitive.

So having that flat tire abruptly changed my plans and it took more time than it should have because we didn’t have the right tools. And getting ME/CFS abruptly changed my life plans and it took more time to get well from ME/CFS because we needed to invent the right tools. What tools are you inventing? What tools are you learning from others? 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 postings on Tuesdays. And consider being part of the conversation.
Be Well Again,
Martha

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ME/CFS Attitude – Highs and Lows

2/4/2020

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Like most people, post the holiday rush and glitz, I’m feeling the let down. Maybe it’s the juxtaposition of so much busyness followed by so much quiet. When I was struggling with ME/CFS, the contrast was starker. Other people went back to their normal, active lives and I went back to my forced slow recovery pace. It was a tough reality to accept.

Handling your ME/CFS attitude is key to finding a path back to wellness. It’s hard to keep yourself up and motivated when you compare yourself to the others around you. And in addition to the physical illness which you are struggling to understand and heal, you have to deal with all the negative judgments and assumptions made about you by others. And don’t forget how harsh and judgmental we can be on ourselves which is completely counter productive.

The only attitude we have control over is our own. So cut yourself some serious slack and jettison the self recrimination. And decide to ignore everyone else’s judgments. It’s a waste of precious energy fretting about it. Focus on what you CAN do to heal and recover. And let all the rest of that negative fodder go.

How do you screen out the negative attitudes of others? Of your self? 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

1/7/2020

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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 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 Holidays – Gift to Yourself

12/17/2019

4 Comments

It’s seven 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

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ME/CFS Choices - The Holiday Bustle

12/10/2019

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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 – Protect Part of Your Day

10/1/2019

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When you’re struggling to recover from ME/CFS, pacing is one of the most difficult challenges. It’s too easy to get caught up in the flow of the day and lose control of what you had intended. We quickly can become victim to over doing and triggering a relapse. It can be absolutely maddening. We know what we need to do and not do. We have planned out the day. It’s in alignment with the protocol we’re following and we know if we follow the plan then we will have a successful, positive day.

Then the unpredictable, real world seems to take over. By the late afternoon we’ve either blown the plan to bits or we’re barely on track just hanging on. And we seem to do this way too often. OK, we’re human and we can forgive our weaknesses. But ME/CFS is not forgiving. ME/CFS is opportunistic and just waiting for an opening to assert itself like an energy gremlin. So what to do?

One of the strategies I used was to plan my day with built in breaks. I would sandwich them around the most demanding part of the day and sometimes also right in the middle if need be. I would have ‘optional’ parts of the day that I could opt out of depending on my energy levels and what else was still required of me. Essentially, I planned for the unpredictable. I gave myself space in the day to rest and to do whatever self-care I needed.

How are you pacing for the unpredictable? What part of your day do you protect? 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 Self-Care – Knowing Our Limits

7/23/2019

7 Comments

Lately I’ve been thinking a lot about self-care. And it got me thinking about what we know about our limits and what we do for others knowing that we will exceed those limits. Our wish to please the people we care about and to do for them somehow overrides all we’ve learned about self-care and especially everything we know about recovery from ME/CFS.

I was reminded of a book I first read in my twenties when I was babysitting - “The Giving Tree” by Shel Silverstein. Maybe you’re familiar with it. On first reading, I thought it was a lovely story about love and what a parent will give selflessly to a child. At the time I saw it from the viewpoint of a child thinking about my mother and her love for me. The next time I read the book, I was a parent myself and I was reading to my child. My fond memory of the book was dashed as I turned each page and read how the main character, a tree, gave and gave and gave to ‘the boy’ until she was nothing but a lifeless stump. And even then, she still gave by letting the now aged boy sit on her.

Healthy people often struggle with self-care choices. As ME/CFS patients we make daily decisions about self-care – energy levels, rest needs, symptom management and recovery protocols. And despite all we have learned, we somehow ‘decide’ to push ourselves too far for our loved ones. Who are we fooling? How do we keep within our limits? How do we communicate honestly with our loved ones? How do we show our love without suffering a set back? 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

7 Comments

ME/CFS Stages – Resist Rushing to the Finish

4/2/2019

2 Comments

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 Mantra – Pace, Pace, Pace

3/5/2019

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We had a light snowfall this week so I went out to shovel the sidewalk. It was only a couple inches of fluffy white so the going was easy. As I scooped up and tossed each airy load, I began to get a rhythm going. And of course I started to think about ME/CFS – my daily thankfulness for my return to full health is never far from the front burner. I had developed two mantras during my struggle back from ME/CFS. The first was Attitude, Attitude, Attitude. It took me a long time to finally cut myself some slack about being sick and then about feeling like I was letting my family and loved ones down. Not to mention dumping my anger at the medical community.

Once I started to accept the reality of my illness and my personal challenges, my mantra switched to what I could actually DO about my situation. That’s when I took up my second mantra. So as I tossed aside the snow, I began to softly, slowly chant, “Pace… Pace… Pace…” Being attentive to my daily routines, my choices for energy expenditure and reluctantly pulling back on my own reins whether I liked it or not, were key to pacing myself back to health. Yes - Of course I screwed up sometimes and wanted to kick myself but mostly I was firm in my commitment. And I did my best to communicate that to others around me.

How are you doing with pacing? What challenges you the most? 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 Feng Shui – How Does Your Energy Flow?

2/12/2019

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I was recently rearranging the furniture in my family room in order to accommodate a new door. I also just wanted a new look without buying new furniture. As I began to move things around, I was surprised at how different the same things could look and function just by rearranging them. The energy in the room changed too. It felt airier and brighter – it flowed better. Of course this got me thinking about ME/CFS and how poorly my energy flowed.

For most of the first half of my struggle with ME/CFS, I didn’t regulate my energy at all. I burnt up whatever I had then crashed. There was no pacing. There was no intension to plan my day around what I could reasonably handle. And most important, there was no progress toward getting better. The opposite was true. I was getting worse.

Once I decided to take more control of my ME/CFS, my energy flow changed dramatically. Instead of the abrupt go, go then stop, stop, stop, I began to use my energy reserves at a slow but steady pace. Much like the familiar Tortoise and Hare story, I was slowly getting back to wellness one day at a time. And over a long period of time I got there. Sadly, I’m guessing that I left a few Hares behind still trapped in the cruelty of ME/CFS.

I’m sitting in my newly rearranged family room as I write. What a difference. The energy is flowing easily - not rushed or stopped up. How are you managing your energy flow? Have you embraced your tortoise? 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 Halt – When we had other plans

ME/CFS Attitude – Highs and Lows

ME/CFS New Year - Take a fresh look

ME/CFS Holidays – Gift to Yourself

ME/CFS Choices - The Holiday Bustle

ME/CFS Pacing – Protect Part of Your Day

ME/CFS Self-Care – Knowing Our Limits

ME/CFS Stages – Resist Rushing to the Finish

ME/CFS Mantra – Pace, Pace, Pace

ME/CFS Feng Shui – How Does Your Energy Flow?

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