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ME/CFS Self-Care – Knowing Our Limits

4/19/2022

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

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ME/CFS Holidays – Gift to Yourself

12/14/2021

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It’s ten 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

12/7/2021

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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

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ME/CFS Healing – The Challenging Last Phase

5/18/2021

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Just recently I received an email from an ME/CFS patient who has been recovering and has reached a better level of functioning but has stopped progressing. This is a story that we are all too familiar with. Many of us have reached that level but can’t seem to get to the next and often last phase of full recovery. I am not an exception. I spent several rounds in ‘Almost There’ territory myself. The first few being miserable failures where I could see and feel the possibility of full recovery and I dashed to what I thought was the sure finish line. We are all too familiar with that story too.

Yes, I crashed and was worse than before each time. Did I learn from this? Not at first. After two of these devastatingly disappointing setbacks, I got the message. I needed to be as careful and as intentionally paced in the last stretch as I was in the first few when my body’s messages were clearer and easier to read. It took great restraint to succeed in making a full recovery. But I made it.

There is a prevalent message in the ME/CFS culture that patients have to learn to live with ME/CFS. According to the accepted mantra, no one fully recovers. This is SO not true. Yes, there are many different dis-eases mixed up in our cruel ME/CFS wastebasket diagnosis. But many patients do fully recover - they just don’t talk about it. But that’s a topic for another blog. My point is that the last phase of recovery is so personally challenging. If it was easy, we’d all be fully well. It takes even more focused attention and ‘case-study-of-one’ perspective because the clues, symptoms and patterns are much more subtle.

Where are you in your recovery? 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 Crash Triggers – What Do You Avoid?

7/21/2020

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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 flotation – 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, I swam laps in a pool every day at lunch or early in the morning if my schedule allowed. Then came ME/CFS 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 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

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ME/CFS Distractions – Stay on Plan

6/9/2020

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I had a plan for the last two weeks but it didn’t play out the way I’d envisioned. Honestly, I can’t remember how things got so off track. Maybe I was trying to juggle too much or maybe it was the reality that too many variables were in play. I was truly over ambitious. Of course, this reminded me of when I was struggling with ME/CFS and it took so long for me to finally get focused on the plan – the single focus plan.

During the beginning of my struggle, I was riding the rollercoaster of push/crash. I had no consistent plan for managing my illness. Each day was a question mark. How was I going to do today? How would I feel? And this lack of planning only made me feel worse. Then I finally understood that all the distractions of life – all of the activities – were keeping me from getting well again. I needed to ignore the distractions and focus on saving my energy and using it with discretion. I needed to stay with the plan.

So the warmer weather is here. The summer will be filled with activities. It will be a time that pushes our wellness plans to the limit. What are your strategies for staying on plan? 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 Choices - The Holiday Bustle

12/10/2019

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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

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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

2 Comments

<<Previous

ME/CFS Self-Care – Knowing Our Limits

ME/CFS Holidays – Gift to Yourself

ME/CFS Choices - The Holiday Bustle

ME/CFS Healing – The Challenging Last Phase

ME/CFS Crash Triggers – What Do You Avoid?

ME/CFS Distractions – Stay on Plan

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

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