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

ME/CFS Optimism – Brighter Days

3/19/2019

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

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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

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ME/CFS Emotional Baggage – Dump It

1/15/2019

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I’ve been helping someone clear out a family home which is full of memories – a mixture of good and bad. But mostly the house is weighed down with so much emotion that it feels like the structure itself sags under the burden. Of course, I started to think about my struggle with ME/CFS and the crushing assortment of emotions that I wrestled with.

In the beginning, I was consumed with frustration that I had no answers and anger that I was so quickly dismissed as ‘just depressed’. Then as I fell into the ME/CFS trap of push/crash cycles I developed self-blame. And as the months then years dragged on with no improvement, I felt guilty about the drain I had become on my family and the lost time that I had stolen from them and from me. Then I added in a good dose of shame. Eventually I had created a toxic soup of emotions which I was drowning in.

Pile all the worry on top of that and I was definitely going under. Talk about emotional baggage! Could I have been any better at bringing myself down? A surgeon couldn’t have succeeded in removing my self-esteem and self-image more precisely. And what about all the energy I drained from my limited reserves just festering over this mountain of emotional baggage?

After I spent a couple of years letting these emotions keep me under, I finally came to the understanding that I was only making my struggle with ME/CFS even harder. It took a great deal of determination to dump the emotional baggage. But once I started to off load, it felt great. I became intentional about my emotions and I packed lightly. How are you dealing with your emotional baggage? 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 New Year - Take a fresh look

1/8/2019

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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

12/18/2018

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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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<<Previous

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

ME/CFS Emotional Baggage – Dump It

ME/CFS New Year - Take a fresh look

ME/CFS Holidays – Gift to Yourself

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