Blog Archives

ME/CFS Recovery – Take Control

2/27/2018

Have you had the experience of being introduced to a new perspective or way of looking at something and then suddenly you see it everywhere? Is it something new that’s popping up everywhere or had it been there all the time? Is it you who has changed by being aware or more open? From my own experience, I think it’s me. And when I truly grasp a new perspective, it seems to apply to everything.

My latest perspective is about control versus out of control. So much of our lives are controlled from somewhere else. But there is much that we can control. Not everything and not all of a certain thing, but there is much that we can tweak, reinforce and push for. Lately I’ve heard many people express to me and wring their hands about how things are happening in their lives. And they take the perspective that they are at the mercy of whatever it is. And as I hear this, my mind is saying take control. Make some intentional changes and be proactive. And of course it’s gotten me thinking about my struggle with ME/CFS.

At first, I turned over control of my illness to my doctors. But after much wasted time and energy, I finally admitted to myself that not only did they not have the answers, they ultimately just didn’t get it. A few were compassionate but that just felt good. It didn’t get me well. Finally I started to carve out pieces that I could control. I was sick of being sick and I was sick of getting nowhere. So, even though I wasn’t convinced that I really could change my SEID/CFS illness, I was so ticked off about having no answers to this cruel disease that I just started recording and tweaking. Recording and tweaking. Recording and tweaking ad nauseum.

So I just took action. I didn’t know what I was doing. But I was doing and it felt good. Would I get anywhere? I didn’t know but it felt better exerting some control. Eventually it became my path back to wellness but I didn’t know that when I started. I just needed to take some control. And it was good for my mental health. Are you taking some control of your version of ME/CFS? 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 my next posting on Tuesday, March 13th. And consider being part of the conversation.
Be Well Again,
Martha

2 Comments

ME/CFS Doctors – Working Relationships

2/20/2018

2 Comments

Finding a doctor or provider who understands ME/CFS can be a challenge. There is still a lot of misinformation and lack of understanding about ME/CFS in the medical profession. And unfortunately, some providers still believe that ME/CFS is not a physical illness. That said, there are some providers out there who DO understand ME/CFS and most importantly, there are many provides out there who know how to work with a patient no matter what the diagnosis.

This puts the burden on us, the patient, to create a working relationship with our providers. How? Step into the role of the provider. They have trained for years to make educated medical assessments based on data collected from medical/family histories, physical examinations, tests and symptoms as described by the patient. Two of these sources rely on the patients memory and capacity to translate how they are feeling into terminology that means something to the provider. For ME/CFS patients, this is a challenge. We inherently are struggling with compromised memories and frequently fail to keep a conversational context for any extended period of time. Add that to the often rushed environment of a doctors office where the face to face time with the physician is limited and mostly directed by the doctor who is asking a lot of questions. Lastly, we have a diagnosis that is non-specific. Each patients version of ME/CFS can be vastly different in presentation other than the standard definitional symptoms. So as patients, we need to be proactive with data. We need to go into the doctors office with an accurate picture of how we have been since our last appointment described in data terms that a doctor can relate to.

A daily health log is key to ensuring a reliable picture of how you are doing. It provides your physician with data driven input. It accurately represents your symptoms and their severity which give your provider specifics on which to focus. Most importantly, it gives you confidence in knowing how you are progressing in real terms that don’t rely on your compromised recollections. Are you keeping a daily log? Do you have a working relationship with your doctor? 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 Solitary Struggles – Asking For Help

2/13/2018

0 Comments

Recently I was trying to juggle several things that really required two pairs of hands. Of course I wrestled with it for a while before I admitted that I needed help. And it reminded me of all the time I spent struggling with ME/CFS in solitude. Some of it was pride – the type A ‘I can do it all’ scenario. Some of it was reluctance – not knowing if I would get a supportive response. And some of it was not wanting to share all the painful, frustrating details of ME/CFS. We tend to be private people and revealing ourselves can make us feel vulnerable and exposed.

For me, I finally had to admit that I needed help as I struggled with ME/CFS. And that required not only a willing and compassionate helper, but it also required that I get off my ‘I can do it’ pedestal and be willing to reveal a Martha who was not in control and on top of things. I needed to be ready to show weakness and not be ashamed or feel belittled. It’s a huge step for some of us.

But I couldn’t avoid the reality that I needed help. So I had to accept the need to reveal myself – and all my blemishes – and get up my courage to ask for help. It resulted in some half hearted maybes which never materialized, several uncomfortable nos, and blessedly a few compassionate yeses. And that was all I needed.

Do you have trouble asking for help? How do you set aside your pride and privacy in order to get help? 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

0 Comments

ME/CFS Attitude – Highs and Lows

2/6/2018

2 Comments

Like most people, post the holiday rush and glitz, I’m feeling the let down. Maybe it’s the juxtaposition of so much busyness followed by so much quiet. When I was struggling with ME/CFS, the contrast was starker. Other people went back to their normal, active lives and I went back to my forced slow recovery pace. It was a tough reality to accept.

Handling your ME/CFS attitude is key to finding a path back to wellness. It’s hard to keep yourself up and motivated when you compare yourself to the others around you. And in addition to the physical illness which you are struggling to understand and heal, you have to deal with all the negative judgments and assumptions made about you by others. And don’t forget how harsh and judgmental we can be on ourselves which is completely counter productive.

The only attitude we have control over is our own. So cut yourself some serious slack and jettison the self recrimination. And decide to ignore everyone else’s judgments. It’s a waste of precious energy fretting about it. Focus on what you CAN do to heal and recover. And let all the rest of that negative fodder go.

How do you screen out the negative attitudes of others? Of your self? 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 Recovery – Take Control

ME/CFS Doctors – Working Relationships

ME/CFS Solitary Struggles – Asking For Help

ME/CFS Attitude – Highs and Lows

Join Our Community
Enter your email address to
follow this blog.

For Books, Supplements, Sleep aids and more

Archives

Categories

ME/CFS Recovery – Take Control

ME/CFS Doctors – Working Relationships

ME/CFS Solitary Struggles – Asking For Help

ME/CFS Attitude – Highs and Lows

Join Our CommunityEnter your email address tofollow this blog.

For Books, Supplements, Sleep aids and more

Archives

Categories

Join Our Community
Enter your email address to
follow this blog.