<![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, 22 May 2012 14:10:40 -0500Weebly<![CDATA[ME/CFS Guest Blog – Dealing With Stress by Tim Boland]]>Tue, 22 May 2012 16:12:57 -0500http://www.defeatcfs.net/1/post/2012/05/mecfs-guest-blog-dealing-with-stress-by-tim-boland.html

With me, I see that having minimal stress is one of the biggest factors in my feeling better.   I have a business which I run, and though I have delegated a lot of it over the past year, if I have a busy morning which requires phone calls, especially around stressful things, the pain I feel that day is often much more pronounced.

Before CFS, I still had a lot of stress at times, but I had a better ability to ‘disconnect’, to watch a movie or something on TV which helped to de-stress, to just put the stress aside for the day.   Having pain which typically increases as the day goes by, there is a constant irritant, even on those days when pain is minimal.   I’ve tried to describe it to some others that it’s like having a toothache all day, where the pain may subside but the pain resides in more than one place in my body with CFS.

I listen to a Chi Kung video nearly every day which on some days is remarkably relaxing as it is about developing a deep sense of our own breathing and our bodies.   In the past couple of days I’ve listened to Joseph Campbell’s Mythos, I write to friends on YouTube and post videos there as I love to photograph.   Today I went for a walk and it is uncommonly beautiful here, and I noticed I felt much less pain and happier.   I do feel there is a real connection between feeling happy, uplifted or even having moments of pure silliness, these emotions bring some real relief.   And I am doing much more than I was in my business a year ago, just able to work for longer periods of time, interspersed with very much needed periods of rest.

I have run into some who say that getting a lot of good sleep and rest really does not make a difference with CFS.   I can’t speak for everyone but for me, sleeping and resting well makes a huge difference.   Having a good sound sleep at night often makes a big difference, in a positive way, in how I feel the next day.

     _____________________________

Thanks Tim! How do you handle stress? Do you have any strategies that work? 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 Humor – Sometimes It Helps]]>Tue, 15 May 2012 11:40:22 -0500http://www.defeatcfs.net/1/post/2012/05/mecfs-humor-sometimes-it-helps.html

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 Aids 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. How do you use it? 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 Pacing - Truths and Miss Queues]]>Tue, 08 May 2012 11:48:46 -0500http://www.defeatcfs.net/1/post/2012/05/mecfs-pacing-truths-and-miss-queues.html

This spring in New England has been a strange cycle of early prolonged hot weather followed by several weeks of cold, damp weather with a few nights below freezing. And like most things that respond to warmth and sunlight, I was out in my garden in early March, clearing the flower beds of winter debris. All of my perennials were sprouted and many already budding out way before their normal timeframe. Now, after a few frosts, I look about and see damage on many of the flowers and shrubs. And of course it reminds me of my successes and failures with pacing when I was struggling with ME/CFS.

It was so difficult to recognize the difference between solid progress where I could take the next step toward recovery and a good day which needed to be repeated at the same level for a while. Of course my hope and emotions were almost always in the ‘this is it’ camp. Unfortunately, most of the time I needed to stay where I was and follow the protocol until this new level of health was consistently repeated. In the beginning, I jumped forward and was almost always rewarded with a set back. Some more severe than others. But over time, I finally began to listen to my body’s call for restraint and to review my daily log for patterns that pointed to whether or not I was ready.

I admit that it took a strong hold on the reins at times when I really wanted to unleash a cantor. Do you struggle with pacing? How do you deal with miss queue 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 Actions – Sign The Petition]]>Tue, 01 May 2012 09:09:34 -0500http://www.defeatcfs.net/1/post/2012/05/mecfs-actions-sign-the-petition.html

When I was bedridden with ME/CFS, I was struggling just to do what I could to help myself. The amount of energy I had to reach out to other ME/CFS patients was limited. And at the time, the internet was in it’s infancy in terms of organizational communication. For ME/CFS sufferers today, the World Wide Web is a blessing. Even if you’re house bound, there is a wide selection of organizations working to solve the puzzle of ME/CFS and to support patients and their caregivers.

Someone recently sent me a link to a petition hosted on Change.org which sends a message to the CDC to reevaluate their ME/CFS research and to step up their efforts. It is supported by many regional ME/CFS groups as well as individual researchers. Please check it out and sign it today. And send the link along to your other ME/CFS groups as well as friends and family. This is something we can all DO.

Will a petition change anything? There are no guarantees. But we’ve all witnessed what can happen when people combine their efforts for a cause. Do you know of other petitions or ME/CFS efforts that we can lend our support to? 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 Emotions - Droughts and Deluges]]>Tue, 24 Apr 2012 11:57:59 -0500http://www.defeatcfs.net/1/post/2012/04/mecfs-emotions-droughts-and-deluges.html

We have been experiencing a drought in New England since the first of the year. The normal Spring rains which enable the flowering of bulbs and perennials have been absent. Then last week the weather forecasters were a buzz about the storms moving up the eastern seaboard laden with much needed water. As the front got closer, things shifted to warnings about flooding and washouts. And of course I began to think about the constant emotional peaks and valleys I experienced when I was struggling with ME/CFS.

As with all emotions that we actively fight to contain, they are held at bay by intentional shoring up with periods of overspills which always seem to be triggered unexpectedly. The cruelty of ME/CFS only served to amplify the intensity of these highs and lows. My first year was full of frustration with the medical community that labeled me as a head case. With few exceptions I was looked upon as ‘mentally weak’ and in need of therapy. After a period of permitting that negativity to cling to me, I finally rejected it. But I was still left with a pattern of extremes where sometimes the skies would dump a deluge of emotions and I would struggle to tread water. After climbing out of that, I would experience a period of emotional drought when I could stay focused on the protocol and the slow but observable progress toward getting well again.

This Focus helped me to eventually steer away from emotional lows. How do you manage this aspect of the cruelty of ME/CFS? How do you shore yourself up? 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 Contributing – Because I Can]]>Tue, 17 Apr 2012 12:59:02 -0500http://www.defeatcfs.net/1/post/2012/04/mecfs-contributing-because-i-can.html

In August of 2000, I was able to celebrate my full return to health by summiting Mt. Kilimanjaro in Tanzania Africa. It was a personal moment. When I returned home, I decided that I wanted to show my gratitude by giving back. The next Spring, I joined the annual Walk for Hunger sponsored by Project Bread. On the first Sunday of each May, we walk 20 miles to raise money for all the food pantries, food kitchens and food programs throughout the New England region. This year will be my 12th walk.

And each year, with every step, I remember my ME/CFS days when I couldn’t walk across a room without collapsing in a chair. I remember the darkest bed ridden days. I remember my anger at the medical profession – which I admittedly still harbor. I remember the frustration with my snails pace recovery. But mostly I remember that I am blessed to be well and that there are so many who are still struggling with this cruel disease.

I set up my donation webpage this morning and it is an honor – yes truly – to be able to contribute because now I can. And I encourage everyone to be a positive influence on those around you and especially on yourself despite your struggle – or a loved ones struggle – with ME/CFS.

Are you able to contribute in any way? 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

If you wish to make a donation, here’s a link to my webpage.

]]><![CDATA[ME/CFS My Version – Ion Channelopathy - Could It Be Yours?]]>Tue, 10 Apr 2012 11:27:24 -0500http://www.defeatcfs.net/1/post/2012/04/mecfs-my-version-ion-channelopathy-could-it-be-yours.html

We all understand that the very definition of ME/CFS means that we don’t all have the same disease – just the same label. We’ve been culled into a symptomatic description of a syndrome that includes many disease possibilities. No one has the answer that will cure all of us no matter how much we wish it were true. With that disclaimer out of the way, I’m going to pull out my soap box and write about my version of ME/CFS and what I think was the key to my full recovery. My reason for doing this is that I feel strongly that some percentage of those labeled with ME/CFS or Fibromialgia have what I had. If this helps just one person recover, I’m thrilled.

Ion Channelopathy – As part of my eight step protocol I drank an 8oz can of V-8 vegetable juice everyday. My intention was to add salt to my diet so that my chronic low blood pressure would rise to a more normal level (so please don’t start chugging salt as it can be dangerous). I was not aware at the time that I was also providing my metabolism with a liquid Ion Cocktail - full of high dose, easily available ions – specifically sodium, chloride, potassium and calcium (the calcium was taken as a supplement at the same time). If you feel that this may apply to you, you should discuss it with your medical practitioner before undertaking any course of treatment. Under the supervision of a medical doctor, you can determine any contraindications and regularly monitor your blood pressure.

I wrote up a full description of my thoughts on this for a later edition of my book. In case you have an earlier version, read about Ion Channelopathy under Further Lessons.

Have you had any experience with ion therapy? Did it help you? 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 Memory – Write It Down]]>Tue, 03 Apr 2012 16:31:34 -0500http://www.defeatcfs.net/1/post/2012/04/mecfs-memory-write-it-down.html

As I age, my memory seems to fail me at unexpected times. I can’t recall the name of a flower that I’ve know for a decade or the name of a street that I’ve driven a thousand times. Recently, I couldn’t remember the name of a friend’s daughter and I wrestled with my memory to pull it up as I stood there with a blank stare on my face. And of course it reminded me of the brain fog I experienced daily when I struggled with ME/CFS.

During my ME/CFS days, I would be in conversation and the entire topic and my thoughts would slip away into an awkward silence. Trying to pay bills or add up simple numbers was painstaking. But most of all, I would loose track of entire days or weeks. I couldn’t recall the simplest timelines. And I struggled to get any sense of progress until I made the commitment to write it down.

Ok, I admit to having a mantra about keeping a Daily Record. And it stems from the realization that it was my daily record that over time gave me the clues to My Version of ME/CFS. I encourage everyone who is struggling with this cruel disease to faithfully keep a record of sleep, activities, rest periods, food and medications during the course of each day and night. It takes about five minutes a day to write it down in a simple, easy-to-scan format.

What kind of record do you keep? What information has proven invaluable? 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 Recovery – A Mine Field of Variables]]>Tue, 27 Mar 2012 13:05:17 -0500http://www.defeatcfs.net/1/post/2012/03/mecfs-recovery-a-mine-field-of-variables.html

If everyone who was suffering with ME/CFS were to write down of all the variables that affect them, it would be a long list. Life in general challenges us but add to that all of the knowns and unknowns of ME/CFS and it can be overwhelming. During the time when I was bedridden with ME/CFS, I must admit that for a good number of my waking hours each day, I cranked over that list. I allowed it to feed on the precious little energy that I had and erode my will to get well.

It was when I finally jettisoned the list and began to focus on one or two variables at a time that my health started to improve. Instead of wandering through the entire mine field where it was certain that one of them would blow up, I carved out smaller areas with a limited scope. Usually this would include a shorter timeframe to focus on and only a couple of life’s issues to act on. It didn’t always work but most of the time, it allowed me to intentionally focus the energy I had on things that were realistically within my reach.

How do you keep yourself within a realistic window? What strategies have worked for you? 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 Optimism - First Day of Spring]]>Tue, 20 Mar 2012 10:52:10 -0500http://www.defeatcfs.net/1/post/2012/03/mecfs-optimism-first-day-of-spring.html

OK, if you haven’t already guessed, I’m an optimist. And yes, our type can get on peoples nerves when we’re too upbeat. Not to say that optimists don’t have their down times. I’ve had many. Some of those darkest times for me were when I was bedridden with ME/CFS. A disease as cruel as ME/CFS plays games with your mind, your psyche and your emotions. The worst of it for me was that I became someone whom I didn’t recognize. It began to erode my sense of self and my self esteem as well as my physical health.

What I took away from that dark place was the knowledge that this sick ME/CFS person was not the full definition of who I was and who I intended to be again. It became a tool – a negative model of what I rejected. I used it as a springboard from which to move upward again. It renewed my commitment to regain my health – one small step at a time. And each step was a little further away from those lowest points.

Did I do this after my first serious depression? Of course not! Type A personalities are quite certain of their methods and need to be clubbed a bit before they admit to being wrong. But after a few low episodes, the optimist blessedly took control and I finally began the slow yet steady ascent back to health.

How to you handle lows? Can you call on your optimist to move you upward again? 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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