Category: Relapses

ME/CFS Recovery Goal – Our Aim is Off

8/25/2020

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. If I 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

2 Comments

ME/CFS Crash Triggers – What Do You Avoid?

7/21/2020

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 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

4 Comments

ME/CFS Distractions – Stay on Plan

6/9/2020

0 Comments

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

0 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

2 Comments

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

2/12/2019

0 Comments

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

0 Comments

ME/CFS Choices - The Holiday Bustle

11/27/2018

3 Comments

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

3 Comments

ME/CFS Energy – Intermittent

8/7/2018

5 Comments

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

5 Comments

ME/CFS Recovery Goal – Our Aim is Off

7/17/2018

2 Comments

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

2 Comments

ME/CFS Irony – Mind Over Matter

5/15/2018

0 Comments

I did a lot of surfing and exploring of the definition of irony before I would even consider using the word. As many have experienced, there is a current culture of ‘looking down one’s nose’ at the ignorant use of the term irony - Alanis Morissette a prime example of being taken to task by many. I have decided that I’ll risk it. Please feel free to chide me if your take is different.

Here’s my perspective. We live in a culture where people are recognized, honored and even championed when they ignore the physical signals of their bodies and push themselves to the brink of their capacity - to a breaking point in the pursuit of some objective. It’s lauded as the ultimate achievement of Mind Over Matter. We see this most dramatically in athletic competitions – the Olympics come to mind - but it also has a formidable presence in the work place, at home and even in personal leisure pursuits. Ultimately, we are held up to the ‘You Can Do It All’ standard. And in a lot of situations, we manage to get away with it for a while.

Then ME/CFS takes up residence. I don’t think that it’s a coincidence that some ME/CFS sufferers would label themselves as Type A personalities prior to ME/CFS. And so when we are challenged with something that threatens us to the core of our physical capacity, what’s the instinctual ‘go to’ solution? Yes – Push Through It. Mind Over Matter. And we are shaken when this not only doesn’t work but it makes ME/CFS worse. Not to mention the opinions expressed by others who observe and conclude that we’re soft, undisciplined, burnt out or just depressed.

So here’s the Dramatic or Tragic Irony. The solution to personal challenges that has been engrained in us since childhood – Mind Over Matter – is the complete reverse of what is required to get control over ME/CFS and to ultimately recover. And it is delivered, wrapped in an ugly package of judgment that we’re weak and in some way inferior. Did I get it right? 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

0 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

<<Previous

ME/CFS Recovery Goal – Our Aim is Off

ME/CFS Crash Triggers – What Do You Avoid?

ME/CFS Distractions – Stay on Plan

ME/CFS Stages – Resist Rushing to the Finish

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

ME/CFS Choices - The Holiday Bustle

ME/CFS Energy – Intermittent

ME/CFS Recovery Goal – Our Aim is Off

ME/CFS Irony – Mind Over Matter

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

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