Blog Archives

ME/CFS/SEID Perspective – Your Consent

5/31/2016

I’ve been lucky to have many teachers and mentors in my life. They’ve come from traditional as well as nontraditional directions. One of my favorites is Eleanor Roosevelt. Recently, I overheard a parent dumping a load of verbal judgment on his child and I started thinking about her famous quote, “No one can make you feel inferior without your consent.” And I was remembering how hard it was when I was struggling with ME/CFS/SEID, to ignore the judgmental comments I received about my ‘weakness’. That somehow I was at fault for being sick - I was choosing to be sick. And that the reason for my continued illness was a lack of will or just plain laziness. I remembered how much that hurt being flung at a ‘work till you drop’ Type A personality like me.

When I finally understood that the path back to health needed to be a case study of one, it freed me from the burden of the ‘holier than thou’ judgments. But it took conscious effort to ignore – to not give my consent for others to label me as inferior.

Another quote of Eleanor’s helped me through that time as well. “Do one thing everyday that scares you.” It took a great deal of courage to let go of so much in order to focus on getting well again.

How do you deal with the attitude of those who look at you and see weakness? Or even laziness? What are your strategies for withholding your consent? 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 Personalities – The Research

5/24/2016

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The question is often raised about personalities and ME/CFS/SEID. Do we have traits in common that are part of the ‘syndrome’? We’ve all heard that ME/CFS/SEID patients are usually Type A personalities defined as competitive, impatient, driven and stressed. For many, the anecdotal evidence supports this association. I’m a classic example of a Type A. And you’ll find blogs, articles and endless fodder on the internet attesting to this viewpoint. But does the research support such a link?

I found three studies that examined the personalities of ME/CFS/SEID patients – let us know if you have found others.

The first, “Personality and Perfectionism in CFS” confirms a personality link. http://www.tandfonline.com/doi/abs/10.1080/08870440802403863#.U02NwtfD-po

The second, “Chronic Fatigue Syndrome and DSM-IV Personality Disorders” concludes that there is no link. http://www.ncbi.nlm.nih.gov/pubmed/19073288

The third, “Personality Features and Personality Disorders in CFS”, offers a ‘maybe or maybe not’ association. http://www.ncbi.nlm.nih.gov/pubmed/20664306

Not addressing the flaws in the research, that’s a solid ‘don’t know’. As ME/CFS/SEID patients, we’ve gotten used to the ‘don’t know’ territory. Our diagnosis is a question mark. The causality is a question mark. The treatment is a question mark. And, of course, our personality’s part in contributing to our dis-ease is a question mark. Status Quo.

But hard data or not, for me, the path to recovery required that I change my personality. Being a type A and recovering from ME/CFS/SEID didn’t mix. I had to not only slow down my body, I had to slow down my psyche. This required focused retraining. How are you dealing with personality and your struggle with ME/CFS/SEID? 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 Stress – Letting Things Go

5/17/2016

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Lately, the amount of stress in my life has been on the rise. It’s primarily a function of too many people and needs pressing for my time and energy as we’re in the midst of multiple life passages. But my situation now is always put into perspective when I think about the level of stress I felt when I was struggling with ME/CFS/SEID. By comparison, today’s stress is a stroll on the beach.

My understanding of all the variables that were affecting me during my illness is clearer now that I have my mental focus back along with the long view. One piece that I get now is how much stress I was under in addition to the underlying physical illness that knocked me down (for more info on my version of ME/CFS/SEID, check under Further Lessons on the website menu bar). We know that a physically healthy person can be undone by stress. It takes a heavy toll on our biological and nervous systems. When those systems are already ‘on tilt’ and not able to cope with ordinary daily demands as they are with ME/CFS/SEID, a heavy load of stress can keep you from recovery. For me, the ME/CFS/SEID stress came from every direction – some self inflicted and some imposed by others needs and judgments. It was like a knock out punch when you’re already on your knees.

The only way I was able to recover was to let all the stress go. And to let go of all the stressful things that accompanied it. Of course, I didn’t do this right away. That would have been too easy. Instead I struggled and tried to handle everything for a few rocky, push/crash years before I finally understood how damaging all the stress was in addition to my physical version of ME/CFS/SEID.

So today, I make use of my hard won ME/CFS/SEID knowledge about stress when I deal with stressors as a healthy person. I do what I CAN do to move my life along and I allow myself some serious slack about all the rest of it – I let things go. How do you deal with the stress as you struggle with ME/CFS/SEID? 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 Support Network - You have to Reach Out

5/10/2016

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Recently, the topic of isolation and ME/CFS/SEID has been raised frequently in emails I’ve received. So often when we’re in an unfamiliar place, we tend to be isolated. If it’s geographically unfamiliar, we resist asking for directions and just muddle along without help. If it’s emotionally or psychologically unfamiliar, we don’t want to talk about it for fear of others judgment that we’re weak or crazy. And if it’s physically unfamiliar, we rely on a medical system that for the most part doesn’t have a clue what to do with us. For ME/CFS/SEID sufferers, that creates a triple play of isolation.

In order to break out of isolation, we need to reach out. Unfortunately, the nature of ME/CFS/SEID separates us from many of the daily networks that we used to depend on for connecting and support. Our workplace, neighborhood, community groups and social groups are diminished if not completely unavailable due to the isolation that ME/CFS/SEID can create. But despite our very limited energy levels, we need to reach out in order to create a support network. So how do we do that?

After I was fully well again, one of the important things I learned was that many of the people around me wanted to help but didn’t know how to – friends, family members, neighbors, community members. And even though I thought I had explained to them what was happening to me, many of them had no idea what I was actually going through. At the time, that seemed unbelievable to me. But I realized how true it was when so many people – including a family member whom I spent time with – told me after they read my book that they never understood my illness until now.

So for someone who is already dealing with ME/CFS/SEID each and every day, please understand that MOST of the people around you don’t know what you’re up against. And really, when you think about it, how could they? As ME/CFS/SEID sufferers, we struggle to understand the roller coaster cruelty of ME/CFS/SEID. It’s a nightmare!

OK, so you’re going to reach out. First, people need to know what’s happening to you. If you have a copy of my book, give it to the people close to you and ask them to read it. Or find other pieces written by ME/CFS/SEID sufferers and share them. This will be an eye opener for your family and friends. Then, come up with ways that people around you can help. Even the simplest things can make you and them feel better. 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 Healing – The Challenging Last Phase

5/3/2016

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Just recently I received an email from an ME/CFS/SEID patient who has been recovering and has reached a better level of functioning but has stopped progressing. This is a story that we are all too familiar with. Many of us have reached that level but can’t seem to get to the next and often last phase of full recovery. I am not an exception. I spent several rounds in ‘Almost There’ territory myself. The first few being miserable failures where I could see and feel the possibility of full recovery and I dashed to what I thought was the sure finish line. We all too familiar with that story too.

Yes, I crashed and was worse than before each time. Did I learn from this? Not at first. After two of these devastatingly disappointing setbacks, I got the message. I needed to be as careful and as intentionally paced in the last stretch as I was in the first few when my body’s messages were clearer and easier to read. It took great restraint to succeed in making a full recovery. But I made it.

There is a prevalent message in the ME/CFS/SEID culture that patients have to learn to live with ME/CFS/SEID. According to the accepted mantra, no one fully recovers. This is SO not true. Yes, there are many different dis-eases mixed up in our cruel ME/CFS/SEID diagnosis. But many patients do fully recover - they just don’t talk about it. But that’s a topic for another blog. My point is that the last phase of recovery is so personally challenging. If it was easy, we’d all be fully well. It takes even more focused attention and ‘case-study-of-one’ perspective because the clues, symptoms and patterns are much more subtle.

Where are you in your recovery? 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 Perspective – Your Consent

ME/CFS/SEID Personalities – The Research

ME/CFS/SEID Stress – Letting Things Go

ME/CFS/SEID Support Network - You have to Reach Out

ME/CFS/SEID Healing – The Challenging Last Phase

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ME/CFS/SEID Perspective – Your Consent

ME/CFS/SEID Personalities – The Research

ME/CFS/SEID Stress – Letting Things Go

ME/CFS/SEID Support Network - You have to Reach Out

ME/CFS/SEID Healing – The Challenging Last Phase

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