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

ME/CFS Recovery – It Takes Some Dedicated Time

4/23/2019

Every once in a while, I drag out my soap box…. Here I go….

I frequently receive emails from people who have been struggling with ME/CFS for way too long. This is such a cruel disease. And I know that everyone’s situation is different with demands and responsibilities. But recovery from ME/CFS, at least for me, came at a price. A very high price. I literally gave up two years of my life in order to recover. And, as you already know, I hated every minute of it up until I started to taste how it used to feel to be well. And when I got that taste, I had hope that I could recover. Full disclose: I had to repeat that ‘first taste’ experience three times before I fully understood what I needed to do next which was nothing.

I needed to stick with the protocol and rest. I needed to stay right where I was and continue to do all the self-care that had gotten me that far. And that’s when I truly began to hate the protocol. As I felt better and better, I continued with the restrictive protocol. Ad nauseam. Hated it!!

How long have you been struggling with ME/CF? What quality of life are you living? Is there any way that you could arrange your life so you could dedicate one year to only being a Patient? One year to hating the protocol. 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 on Tuesday May 7th. And consider being part of the conversation.
Be Well Again,
Martha

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ME/CFS Attitudes – Rainy Days Made Me Happy

4/16/2019

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It’s a cold rainy day in New England after several warm spring days. For the middle of April one might expect something different. But I’ve lived here my whole life and one can always count on the weather to change moment to moment. So today, as I settled in for a less active indoor day, I started thinking about my struggle with ME/CFS and those rainy days. One might think that like some people, rainy days would have seemed dreary and sad back then. But the opposite was true. Rainy days made me very happy.

Why? When I was struggling with ME/CFS, sunny warm days made me miserable. I wanted so much to be out and going about my life. And lovely days were a tough reminder that I was too ill to participate in my own life – in anyone’s life. Those days seemed twice as long as normal. They dragged and dragged and dragged on some more. Those days were depressing.

I must admit, somewhat ashamed, that cold rainy days made me feel like other people might have their days limited as mine were. Not with the physical symptoms of ME/CFS but the limitations on mobility. The restriction of activity and possibly some of the isolation. I felt like other people were stuck in it with me. A sort of warped sense of misery loves company. And this made me happy. OK, not one of my best moments.

As I began to understand that I needed to get off the ME/CFS roller coaster and focus on a real recovery plan, this weather influenced attitude began to change. My daily approach to healing became a matter of choice as I was no longer a victim of ME/CFS but rather someone who was on an intentional recovery path. Nowadays when I’m trapped indoors on cold rainy days, I like to make the best of it and imagine I have lots of company. And a nap is nice too. How do you relate to cold rainy 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 Stages – Resist Rushing to the Finish

4/2/2019

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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 Optimism – Brighter Days

3/19/2019

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It happens to me every year around the end of March. Although I don’t see the signs of change in myself yet, one of my window plants catches my notice. There’s a new vibrancy in its color or maybe even a tiny sprout where a dead leaf had dropped. Something triggers my attentiveness and before I’ve cognitively made the connection, I’m trimming, repotting and fertilizing all my plants.

What my plants have all been responding to, and what I’m also caught up in, are the longer days with brighter light streaming in my windows. And I think back to my ME/CFS days and remember how hard it was day after day, week after week and month after month to keep my spirits up. To remember my resolve to keep to the protocol, to allow myself the space to heal, and most importantly to cut myself the mental slack I needed. The only time I didn’t need to be intentional about being upbeat was when the light began to get noticeably brighter at this time of year. There’s a reaction to the increasing daylight that we experience on a cellular level. I’m sure there are reams of scientific studies that have investigated this response but I don’t need to read them. My sense of renewal and optimism are palpable. And during my ME/CFS struggle, it was natural to see this NOT as the marking of another year of this cruel illness, but as the beginning of the year when my progress would get me to the next health plateau – the next stage of recovery.

I’m hoping that you are able to harness this brighter light and natural source of anticipation to carry you successfully along your path back to wellness. 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 my next posting on Tuesday April 9th. And consider being part of the conversation.

Be Well Again,
Martha

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ME/CFS Mask – Reveal Yourself

3/12/2019

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I awoke this morning to a fresh covering of sparkling powdery snow. It clung to every branch of each tree and hung in clumps on the evergreens. The snowy carpet was a brilliant white when the sun shone and it disguised every little blemish which had been visible the day before. It reminded me of when I was struggling with ME/CFS and I would bravely wear my mask of ‘I’m doing ok’ even though I was hard pressed to hold it together. I had been taught by others that they were not interested in my illness or didn’t understand it or didn’t believe that I had a real physical illness.

It drove me to not talk about it. I had come to flinch at ‘the looks’ whether they were disinterest, confusion or pity. Unfortunately, I began to only see those people and under value the people closest to me who cared and who understood. I would sometimes hide my true situation from them as well.

It’s hard to stay the course with ME/CFS and work your way back to health by watching your patterns and conserving your energy. You need a few people to be there with you. Not a crowd – just a few. When I finally revealed my true situation to a few close friends, the response was supportive and unburdening for me. I realized how hard it had been to wear the mask of ‘I’m doing ok’.

Take a risk with a trusted friend and let them know how you are truly doing. Or reach out to someone who already knows and check in. For a selective few, their support and caring can make a huge difference. 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

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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

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ME/CFS Symptoms – Consider Food Allergies/Sensitivities

2/26/2019

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Although most ME/CFS patients share a core group of symptoms, many have additional symptoms that add to the complexity of treatment and healing. Depending on how long ago you were diagnosed with ME/CFS and how thoroughly you were tested, you may or may not have explored food allergies or intolerances. There are in fact some patients who have been diagnosed with ME/CFS who are actually suffering from food and/or environmental allergies.

Recently I was reading about Gluten intolerance and I was surprised at the overlap of symptoms with the standard definition of ME/CFS – Fatigue, feeling rundown like you have the flu, joint pain or numbness in extremities, ‘foggy mind’ where concentration is difficult, headaches, prolonged changes in mental health and gastrointestinal discomfort. It seems that when our bodies are immunocompromised, the symptoms are similar no matter what the cause. According to a recent article ‘Adult-Onset Food Allergies Increasing, Confusing’ on WebMD, about one in 10 adults have a food allergy with half of these starting well into adulthood.

Could you be struggling with a new food allergy? Could a food or environmental allergy/sensitivity be complicating your recovery? Consider this as part of your continuing ‘case study of one’ as you work to understand your version of ME/CFS. 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 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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ME/CFS Recovery - Every Day Counts

1/29/2019

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I have a long-term goal. And I make progress in some ways but fall short in others. It’s been a struggle. I made a recent decision to rethink my time management around this goal and remembered a favorite quote from Annie Dillard, “How we spend our days is, of course, how we spend our lives.” And I started to see the parallels between my recent approaches to this new goal and how I had initially reacted to my struggle with ME/CFS. My approach had been inconsistent and I misunderstood the need to apply myself every day to my desire to get well.

So much of what I did in those early days of ME/CFS came out of frustration and anger. But even when I moved past that, I still wasn’t focused on the importance of how I spent each and every day. It took a while before I began to see each day as a building block, which was added to the day before. And so on until I had built up a week of days, then a month of days and eventually many months and finally a year of days. That added up to 365 days in a row of consciously working toward recovering my health. When I finally understood the value and rewards of daily focus, I began to see real progress.

So our lives do reflect how we spend our days. And one day at a time, each and every day, you can make progress toward regaining your health. That’s the only way I was successful. How do you focus on your recovery every day? 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 my next posting on Tuesday, February 12th. And consider being part of the conversation.

Be Well Again,
Martha

4 Comments

ME/CFS Humor – Sometimes It Helps

1/22/2019

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Over the years I’ve been able to develop a thick skin when it comes to hurtful comments from others about my struggle with ME/CFS. Dismissiveness or even subtle innuendoes suggesting that my illness was a mental health problem are a reality and I’ve come to deal with them as part of the package of ME/CFS. But recently, someone whom I thought ‘got it’, belittled my illness with a wave of her hand referring to it as a brief bout with severe depression so just get over it. REALLY!?!

I’ve now got Seth and Amy of SNL zinging their Weekend Update one liners across the video of my mind. Saying that ME/CFS sufferers are only severely depressed is like saying that ulcers can be cured by thinking pretty thoughts. REALLY!?! If ME/CFS patients are mental health cases then MS is a lifestyle choice. REALLY!?! If you think that Prozac is the cure for ME/CFS, then I’ve got a bottle of snake oil that will cure your condescending attitude. REALLY!?!

Sometimes humor is the best medicine. 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 Recovery – It Takes Some Dedicated Time

ME/CFS Attitudes – Rainy Days Made Me Happy

ME/CFS Stages – Resist Rushing to the Finish

ME/CFS Optimism – Brighter Days

ME/CFS Mask – Reveal Yourself

ME/CFS Mantra – Pace, Pace, Pace

ME/CFS Symptoms – Consider Food Allergies/Sensitivities

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

ME/CFS Recovery - Every Day Counts

ME/CFS Humor – Sometimes It Helps

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