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ME/CFS/SEID Distractions – Stay on Plan

5/30/2017

I had a plan for the last two weeks but it didn’t play out the way I’d envisioned. Honestly, I can’t remember how things got so off track. Maybe I was trying to juggle too much or maybe it was the reality that too many variables were in play. I was truly over ambitious. Of course this reminded me of when I was struggling with ME/CFS/SEID and it took so long for me to finally get focused on the plan – the single focus plan.

During the beginning of my struggle, I was riding the rollercoaster of push/crash. I had no consistent plan for managing my illness. Each day was a question mark. How was I going to do today? How would I feel? And this lack of planning only made me feel worse. Then I finally understood that all the distractions of life – all of the activities – were keeping me from getting well again. I needed to ignore the distractions and focus on saving my energy and using it with discretion. I needed to stay with the plan.

So the warmer weather is fast approaching. The summer will be filled with activities. It will be a time that pushes our wellness plans to the limit. What are your strategies for staying on plan? 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/SEID Emotions - Droughts and Deluges

5/23/2017

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Spring weather in New England can vary dramatically day to day. This year is no exception. The normal spring rains which enable the flowering of bulbs and perennials have been alternating with oppressive dry summer like heat waves. Cold heavy rain for days followed by sun baked days approaching 100 degrees. Last week the weather forecasters were a buzz about the storms moving up the eastern seaboard laden with 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/SEID.

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/SEID only serves 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 and to avoid riding the drought and deluge roller coaster. How do you shore yourself up? 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/SEID Doctors - Guest Blog by Tim Boland

5/16/2017

2 Comments

As so often in your blogs, Martha, I see references to self-care, how discipline and staying with it consistently are of such vital importance.

I had a very distressing time at my doctors, and without going into details, it prompted me to Google something like 'what to do when your doctor does not listen'. I gained much insight by the experience of others, reading in one article that on average, if a patient speaks up he/she is interrupted by the doctor after only 17 seconds!

Mine is especially bad at listening, to the point where even the thought of going to see him is stressful, and as many of us know, more stress leads to tightening of our muscles, and that tightening increases our pain levels.

I share these links as they speak directly to what to do if you physician is not listening, if you do not feel respected, and some possibilities.

http://www.thewebelongproject.com/blog/advocating-for-yourself

http://www.webmd.com/a-to-z-guides/features/be-heard#1

Tim Boland

Thanks Tim! Unfortunately, it is a challenge to find a doctor who is knowledgeable about ME/CFS/SEID. Or even simply one who believes that we are physically ill and who works with us and listens to help us unravel our version of it. What have your experiences been? 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 a weekly posting on Tuesdays. And consider being part of the conversation.

Be Well Again,
Martha

2 Comments

Recovery Opinions – Some More Hopeful Than Others

5/9/2017

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ME/CFS/SEID patients seem to be firmly in either the ‘can’ or ‘can’t’ recover camps. As one might guess, most of the opinions can to be related to whether or not each has been able to recover. And then there are the rest: fence sitters who are hopeful and want recovery to be possible.

For me, I keep coming back to what I feel is so unfair about this ME/CFS/SEID 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 treatment 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/SEID patients can recover. Can they all recover using the same treatment? No. Can they recover using the same protocol and 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.

Personal data collection (yes, I keep harping on this) and successful strategies seem to be the way out for many. Have you developed any strategies that work for you? 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 a weekly posting on Tuesdays. And consider being part of the conversation.

Be Well Again,
Martha

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ME/CFS/SEID Hope – Take Action

5/2/2017

2 Comments

Recently the Dalai Lama was visiting the Boston area and we were able to watch one of his talks via live stream on the web. Like most spiritual leaders, he shared some universal ideas about our common humanity. After his talk, he answered questions from the audience. One person asked if he prayed and did he feel that prayer was helpful for creating world peace. His answer was quick and emphatic. “No! Not prayer or hope or blessings. For change, you need action.”

I immediately thought back to my struggle with ME/CFS/SEID. Although hope was good to have, it didn’t get me anywhere without action to back it up. It wasn’t until I stopped looking for someone else to cure me that I finally started to make progress toward wellness. It was the specific actions from my protocol that got me well. And of course I was optimistic and hopeful as much as I could manage. But that didn’t allow me to defeat ME/CFS/SEID. It was the day-to-day, week-to-week, month-to-month actions I took to bring about my recovery.

So my reaction to the Dalai Lama’s answer was a big smile. He knows what he’s talking about. How do you turn your hope for recovery into action? What strategies do you use? 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/SEID Distractions – Stay on Plan

ME/CFS/SEID Emotions - Droughts and Deluges

ME/CFS/SEID Doctors - Guest Blog by Tim Boland

Recovery Opinions – Some More Hopeful Than Others

ME/CFS/SEID Hope – Take Action

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ME/CFS/SEID Distractions – Stay on Plan

ME/CFS/SEID Emotions - Droughts and Deluges

ME/CFS/SEID Doctors - Guest Blog by Tim Boland

Recovery Opinions – Some More Hopeful Than Others

ME/CFS/SEID Hope – Take Action

Join Our CommunityEnter your email address tofollow this blog.

For Books, Supplements, Sleep aids and more

Archives

Categories

Join Our Community
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follow this blog.