 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.
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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
 © 2012 NBC 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
 © 2012 TSM 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
 © 2012 TSM I’ve recently had a series of emotionally challenging events in my life. It’s resulted in hesitancy about what’s coming next – an apprehension about the future which I know will at some point entail more of the same kind of challenges. And of course it renewed the feelings that used to affect me when I was struggling with ME/CFS.
I had tried mightily to not let feelings of anxiety or fear of more bad days get to me. My cognitive brain accepted that I would have to deal with them as I slowly recovered but my emotions and psyche were uneasy – waiting for the signs and body pain that would be the harbinger of a bad day. Sometimes I would allow this anxiety to effect my day even if it was by comparison a reasonable day. It took a great deal of intentional focus to see the positive side of how I was physically feeling. And to ignore the anxious voice inside of me.
The strategy that finally worked for me was planning ahead. During the time I was bedridden, I would plan by the hour. What should I be doing during the next few hours to achieve a good outcome? As I got healthier, I planned by the day. What should my day look like in order to stick to the protocol and have a successful day? Eventually, I was looking at a week and planning a well paced reasonable series of days that generated a positive result. It seems simple but it worked.
How do you let go of the apprehension? 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
 © 2011 TSM 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 under the constraints of 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’. Ha! Lessons can be tough to learn. Gratefully, I had people around me and a voice in my own head that said, “Do what you enjoy and 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 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
 © 2011 TSM Most ME/CFS patients would agree that supporting our immune system is key to a successful path back to health. We recognize that this system is a 24/7 work horse that never rests. The majority of challenges to our person health that we encounter are never known to us due to the vigilance and vigor of our efficient immune systems. And some researchers support the theory that part of the ME/CFS struggle is due to a compromised or ‘on tilt’ immune system.
So what should ME/CFS patients do to support our immune systems? From my perspective, it’s hard to find definitive information unless it’s followed by an ad for the recommended product. At one extreme are the recognized research groups who won’t commit to anything specific. At the other extreme are the passionate semi-scientific articles extolling the virtues of a ‘total solution’ product. ME/CFS patients find it difficult to sift thru all of this when so much is at stake and brain fog is dulling one’s judgments.
Here’s a link to an article from Harvard Medical School “How to Boost Your Immune System.” It’s couched but ultimately informative. And it gets us into the supplement discussion again. For me, eating healthy food loaded with nutrients and getting REM sleep were the highest priority in my efforts to support my immune system as I was working to defeat CFS.
What are your strategies? Have you found a combination of things that add up to a healthier immune system? 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
 © 2011 TSM Last weeks blog triggered e-mails from patients who were firmly in either the ‘can’ or ‘can’t’ recover camps. As one might guess, most of the opinions seemed to be related to whether or not each had been able to recover. Laura Hillenbrand was mentioned frequently by the ‘can’t’ camp. Here’s a link to her article about her illness. http://www.cfids-cab.org/MESA/Hillenbrand.html Leigh Hatcher was a favorite of the ‘can’ camp. Here’s a link to his website. http://www.notcrazy.net/And then there was the rest, fence sitters who were hopeful and wanted recovery to be possible.
For me, I keep coming back to what I feel is so unfair about this ME/CFS diagnosis. The fact the even though thousands of patients get this label, they actually don’t all have the same disease. So using the same protocol and approach, two patients can have completely different outcomes. Or one has great success and the other minimal improvement. Yes, I believe that ME/CFS patients can recover. Can they all recover using the same treatment? No. Can they recover using the same strategies? Call me crazy but my answer is yes.
My training as a health professional drilled into me two things: first, despite all the marvelous progress that medicine had made over the last century, we still only know and understand a small portion of the intricacies of the human body. Second, the way that we learn things is to collect data, hypothesize, test, evaluate and then collect more data, etc.
My next blog will focus on personal data collection (yes, I keep harping on this) and successful strategies. Have you developed any strategies that work 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
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