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ME/CFS/Fibro Self Care – Be Sick Be a Patient

9/25/2012

I flew down to Florida this week to take care of my mother after her second heart procedure. She came through it well and was given a good prognosis which is great news for our family. When I arrived, she was concerned that the house wasn’t ready for my visit. I had all I could do to convince her that I was there to take care of her. She finally relented and started being a patient. Of course, it reminded me of myself when I was struggling with ME/CFS/Fibro. For a long time, I fretted over the things that I wasn’t getting done, how I wasn’t contributing, how much of a slacker I was in taking care of my loved ones and my life.

When you’re struggling with a disease as cruel as ME/CFS/Fibro, the coulda shoulda wouldas can weigh heavily on your mind. You look like you’re ok. Some days, for a while, you might actually feel like you’re ok. And for the most part, the people around you don’t get what you’re going through. So your tendency is to be inconsistent in your self care. You crash when you have to. You push when you think you can get away with it. And you spend many days in between trying to squeeze as much as you can out of yourself. And what does that get you? - Chronic ME/CFS/Fibro.

It took me a long time to allow myself to be sick and to be a patient. And even after I knew I needed to make self care my top priority, I still stumbled and struggled to justify what at times seemed to be so selfish. But after I finally stayed true to being a patient, I began to regain my health in a significant way.

How do you stay true to managing your self care? What strategies do you use? 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

2 Comments

ME/CFS Answers – Look Within

9/18/2012

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Several decades ago everyone was wearing buttons. It was the rage at the time and we Americans totally obliged. I was slow to the party. There really wasn’t something so important that I wanted to assert it everywhere I went. Then I saw a button that called to me. It simply said – Begin Within. Yes, this was a perspective that I knew well and would want to impart to all. Skip forward to last week when I was rummaging thru a drawer and found it. I was thinking about how this simple wisdom was the key to my struggle with ME/CFS.

It wasn’t until I stopped looking for answers from others and looked within. That’s where I finally found the answers. Of course, they weren’t spelled out in big letters. They were hidden in my version of ME/CFS. I had to do the work to find them but they were there. Once I got on track with my daily record, the answers started to slowly surface. Not in days or weeks, but months and years. It took patience and pacing but it all started when I understood that I needed to – Begin Within.

Have you discovered some important clues to your recovery by beginning within? 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

PS - Here's a pic of my button.

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ME/CFS Pacing – Keeping the Beat

9/11/2012

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I was recently playing drums with a small group of inexperienced drummers and what started with a base rhythm devolved into a less than pleasant cacophony of noise. If you’ve ever sat in on a drum circle, you know exactly what I mean. To solve this problem, the leader needs to lay down a basic simple beat and hold it. It gives everyone a point of reference to play off of and to return to and it keeps the group cohesive. Experienced drummers already know this and learners usually pick it up when the leader points it out. When you’re struggling with ME/CFS, there’s no leader to set the basic beat.

When a large mother drum is present, several people sit around it and hold down a beat – sometimes it’s a heartbeat. It sounds like an actual heart beating – boom, boom, pause. Boom, boom, pause. Just like the line you’d see scrolling across the screen of a cardiac monitor. Two peaks followed by a flatter line. It’s all about the underlying rhythm - the natural pacemaker.

Unfortunately for ME/CFS patients, it’s a challenge to keep the basic beat – the pace that will consistently get us from day to day without being caught up in a push/crash cycle. It’s a matter of fine tuning. Collect data, make observations, find successful patterns – Repeat. Repeat, Repeat, Pause. Repeat, Repeat, Pause. And eventually Repeat your way back to health.

How do you pace to a basic beat? 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

2 Comments

ME/CFS Change – New Beginnings

9/4/2012

7 Comments

Although the official beginning of Fall will arrive on the Autumnal Equinox, the days after the long Labor Day weekend and the sighting of a morning school bus bring on the feel of the changing season. Although some of us would enjoy an extra week or two of August weather, it’s time. And nature reinforces that with the cooler nights and comfortable daytime temps. When I was first sick with ME/CFS, I would grind on myself about another season come and gone – wasted – while I languished in bed. I was still caught up in the desperate search to find someone who could cure me.

Then I finally began to realize that there wasn’t a silver bullet – even now, I’m sad that there isn’t – and that I needed a new approach. A change - A new beginning. I had been doing the same things over and over again and expecting a different outcome – I believe that’s the definition of insanity. And yes, anyone would get a little insane if they knew they were physically ill but no one could or would provide some answers.

Many of us find change to be outside of our comfort zones. But change is the way forward for many of life’s challenges. ME/CFS is no exception. It wasn’t until I took a hard look at myself and my specific version of ME/CFS that I began to heal and work my way back to full health.

What change will you bring to your approach to ME/CFS? What new strategies will you add to your daily regimen? 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

7 Comments

ME/CFS/Fibro Self Care – Be Sick Be a Patient

ME/CFS Answers – Look Within

ME/CFS Pacing – Keeping the Beat

ME/CFS Change – New Beginnings

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ME/CFS/Fibro Self Care – Be Sick Be a Patient

ME/CFS Answers – Look Within

ME/CFS Pacing – Keeping the Beat

ME/CFS Change – New Beginnings

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