<![CDATA[...DEFEAT Chronic Fatigue Syndrome: ...............................................................You don't have to live with it

<![CDATA[...DEFEAT Chronic Fatigue Syndrome: ...............................................................You don't have to live with it - Home]]>Tue, 21 Feb 2012 08:41:50 -0500Weebly<![CDATA[ME/CFS Optimism – Brighter Days]]>Tue, 21 Feb 2012 11:27:16 -0500http://www.defeatcfs.net/1/post/2012/02/mecfs-optimism-brighter-days.html

It happens to me every year as the end of February approaches. 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 has been 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 a 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. How are you utilizing this bright injection of renewed energy? 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

]]><![CDATA[ME/CFS Support - Words of Appreciation]]>Tue, 14 Feb 2012 10:52:36 -0500http://www.defeatcfs.net/1/post/2012/02/mecfs-support-words-of-appreciation.html

It’s Valentine’s Day. One of those loosely historical, made up days to sell stuff.
OK that was cynical. But we seem to have developed an entire year of these almost monthly events which push us to do or buy something. Or feel out of it if we don’t.

For me, today is an exception. When I was struggling with ME/CFS, I wasn’t very good at recognizing all the kind and thoughtful things people did for me - family, friends and strangers too. Unfortunately, for a good part of my struggle, I was seeing everything through a veil of angst – anxiety about my situation tinged with hope for resolution. This sometimes kept me from seeing the people around me who cared and wanted to support me. I often forgot, caught up in my own wrestling match of emotions and physical malfunctions, that those around me were feeling some of the same helplessness – not sure of what to say, what to do or when to just be present for me.

For some reason, on the first Valentine’s Day after I was beginning to feel strong again, I felt the desire to express my ‘love’ and appreciation to those who were supporting me. It started a tradition that I still follow. Today has become a reminder day for me to stop for a moment and make sure that I let the people in my life know how much they mean to me and how much I appreciate them. Yes, that’s hokey. But I prefer it to cynicism.

Are you making time to let people know how much you appreciate them? 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

]]><![CDATA[ME/CFS Gifts – Better Days]]>Tue, 07 Feb 2012 10:17:43 -0500http://www.defeatcfs.net/1/post/2012/02/mecfs-gifts-better-days.html

I live in New England where this winter has been unseasonably warm. I’ve had mixed feelings about it. Growing up with sledding, skiing and building forts, it seems unnatural. I miss the coziness of a cold winter - but not the hassle of ice storms and hazardous travel. The relatively warm weather could be a fluke or a harbinger of climate change. I won’t wander off on that topic…

Last week we had a sunny warm January day that reached 60. I went for a walk and felt all the usual stirrings of spring. Of course I knew that it wasn’t here to stay but the taste of it was enticing. I remembered back to my ME/CFS years when after a period of intentional good behavior, doing everything I knew about how to get well, I had a really good day. It was so enticing then to start my old life back – to forego all that I had learned in the hope that this was it. I was a gift of one day that could reinforce all my intentions to stay the course or lure me into a false sense of full wellness.

Several times I was suckered in by the gift. But after a few bad turns I got it. By comparison it put so much in perspective. So this is what it feels like to be better and feeling strong! So just as I knew that the 60 degree day was only a reminder of what was to come, avoid the pitfall of this wonderful gift of a better ME/CFS day. Revel in its potential to be repeated more often and stay the course of pacing.

How have you reacted to these gifted days? 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

]]><![CDATA[ME/CFS Feeling Empty – Sleep Depravation]]>Wed, 01 Feb 2012 09:39:13 -0500http://www.defeatcfs.net/1/post/2012/02/mecfs-feeling-empty-sleep-depravation.html

I haven’t been able to sleep much since last Thursday. My mother-in-law, who we were very close to, suffered a major stroke and then struggled mightily for a few days before she passed away on Sunday. With our hearts broken, we’ve been wading through all the ‘must dos’ as we prepare for her funeral on Friday.

And night after sleepless night, of course I began to think about ME/CFS. Yesterday, the exhaustion was so pervasive that I had a mental flashback to the lowest days of my ME/CFS years when even holding a glass of water was beyond my strength. I tried to blog yesterday but the brain fog was so thick that I couldn’t remember my thoughts for more then a moment or two. It was a long day of running on total empty. And I thought often about those who are struggling with ME/CFS and it strengthened my commitment to be part of the conversation.

Blessedly, I slept for 5 hours last night. Even my active, mourning brain couldn’t keep my body from finally getting some REM rest. This morning I feel a little more energy and a great deal of Gratitude that ME/CFS is a nightmare from my past.

Wishing everyone the strength and opportunity to regain their health. 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

]]><![CDATA[ME/CFS Irony – Mind Over Matter]]>Tue, 24 Jan 2012 10:33:48 -0500http://www.defeatcfs.net/1/post/2012/01/mecfs-irony-mind-over-matter.html

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 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 many 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 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

]]><![CDATA[ME/CFS Mantra – Pace, Pace, Pace]]>Tue, 17 Jan 2012 13:00:02 -0500http://www.defeatcfs.net/1/post/2012/01/mecfs-mantra-pace-pace-pace.html

We had a light snowfall last night so I went out to shovel the sidewalk this morning. 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 this morning, 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 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

]]><![CDATA[ME/CFS – Are Genetics a Variable?]]>Tue, 10 Jan 2012 11:28:46 -0500http://www.defeatcfs.net/1/post/2012/01/mecfs-are-genetics-a-variable.html

Sometimes realizations ooze quietly into your life and you need to look behind you to actually see them. Sometimes they arrive via a lightning bolt epiphany. My latest was the latter. Over the holidays, my mother visited and we enjoyed many family conversations but the trigger came when she looked at a picture on my desk of her mother (my grandmother). She hesitated, then asked, “Was that taken before or after she was sick?” It took my brain cells a moment or two to remember that my grandmother had been sick for many years long before I was born. She struggled to recover from either malaria or typhoid (my mom wasn’t sure which as she was a little girl at the time.) “She was in an infirmary for many years because she was so tired and couldn’t handle the family and all the farm work”, my mom continued. Click. I then asked, “Mom, weren’t you sick for a long time after your last baby was born?” “Oh yes, I just couldn’t get my strength back. I was so tired all the time. It took a couple years before I got strong again.” I was the little girl at that time. Click. Click. Click.

With a background in the scientific method, I’ve never been one to make gross assumptions based on anecdotal evidence. During my struggle with ME/CFS, we poured over the published literature looking for clues to my illness and trends in the epidemiological write ups of mass illnesses (there was virtually no research to be found specifically on ME/CFS). One piece that stuck with us was a gut certainty (now that’s scientific) that genetics had to be part of the puzzle. Not the whole, but a variable in why my illness progressed as it did when others around me recovered and went back to their normal lives.

And as those Clicks got louder, the image of the other sick woman with the swollen belly and dark raccoon eyes in the doctor’s waiting room came back to me. Our onset and illnesses were mirror images. So once again, this certainty of a genetic component clicked into place. This time it had three generations of anecdotes but still no scientific data.

Do you have any gut anecdotal feeling about the underlying causes of your version of ME/CFS? Since it’s a wastebasket diagnosis, we could all be right. 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

]]><![CDATA[New Year Resolutions – Take Control]]>Tue, 03 Jan 2012 15:20:26 -0500http://www.defeatcfs.net/1/post/2012/01/new-year-resolutions-take-control.html

I’ll be completely honest. I’m not a fan of New Year resolutions because most of us set ourselves up for failure by selecting a goal which is too difficult and all encompassing. These types of resolutions require the individual to change most of their way of being in the timeframe of an overnight. Is there anything wrong with challenging ourselves with self improvement? Absolutely not. But when you’re struggling with ME/CFS, let’s not add just one more big failure to the pile of reasons why we sometimes grind on ourselves.

Although the patients experience with ME/CFS can differ, there is one consistent thread that I hear from everyone – Helplessness. This disease persistently beats us down. With the lack of recognition, with the lack of medical treatment, with the lack of understanding from many of those around us, and with our own self doubts. It can be daunting. And in the face of this, it can be easy to allow ME/CFS to control us and to give in. We forget that there are aspects of this disease that we do have control over.

We control our daily choices about rest, nutrition and supporting our immune systems. We control our data collection and review of patterns. We control how we communicate and seek support. We control our own attitudes and approach to ME/CFS.

I encourage you to start by taking control of just one of these areas of your ME/CFS struggle. Then over time as you feel confident in that area, add something else. Slowly, patiently and consistently begin to take back what you can control about ME/CFS.

My wish for all of you is a year filled with step by step success in taking control of ME/CFS. Where are you going to start? 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

]]><![CDATA[Holidays and Illness – How Do We Cope?]]>Tue, 27 Dec 2011 16:25:46 -0500http://www.defeatcfs.net/1/post/2011/12/holidays-and-illness-how-do-we-cope.html

My apologies for missing my blog last Tuesday but even my hardened 11th grade French teacher would have given me a bye week. My son had surgery which hospitalized him for six days followed by a readmission due to complications. During the many days I spent with him wading thru the copious obstacles of our medical system, I noticed all the families who were also spending their holidays in the hospital. I thought often about how I coped with holidays back in my ME/CFS days.

Basically, I had to abandon all visions of ‘the ideal’ holiday, whatever that meant. While I was still riding the rollercoaster of denial, my holidays were horrendous push/crash cycles. Mostly crash. After I started following the protocol, it was an anguished series of choices to try to stay within my known limits. Whatever success I had was tinged with a dose of guilt and a tad of anger at the medical system and its failure to unravel the mystery of ME/CFS. But my holidays did get better as I came to understand my version of ME/CFS and what worked or didn’t.

My son came home last night and we are hopeful that he’s home to stay. How did you cope with your holidays? Were you able to manage some balance in your energy expenditure or was it push/crash? 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

]]><![CDATA[ME/CFS Colored Glasses]]>Tue, 13 Dec 2011 03:00:00 -0500http://www.defeatcfs.net/1/post/2011/12/mecfs-colored-glasses.html

When you are struggling with ME/CFS, it’s hard to see anything else. ME/CFS controls your energy, your schedule, your choices, your physical comfort, your day, your night and your outlook. Everything you consider can be interpreted through your ME/CFS colored glasses with a dose of brain fog.

For someone with ME/CFS, it’s a necessity. It’s a survival mechanism. It’s reality. And fighting this reality is fruitless. Just more squandered energy and risked relapses.

Remembering that we have restrictions eventually becomes second nature. And as much as it totally stinks, it can develop into the way forward. Acceptance of this second nature or inner ME/CFS voice can bring rewards. Better choices. Better days. Beginning to experience better weeks.

For me personally, it took several knock down relapses before I understood this dreaded voice. Some days I wanted to throttle it. The message was one that I didn’t want to hear. But slowly, eventually, I began to listen. Do you listen to the cautionary messages of your inner voice? Are you learning to pace yourself better and avoid severe relapses? 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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