Blog Archives

ME/CFS Energy – Intermittent

10/30/2012

Hurricane Sandy has swept up the east coast and I hope that all of you in her path were safe and able to ride out the storm. Although the after effects will continue to create stormy conditions, the riskiest phase is past. We now have our power back for good. During the height of the storm we lost and regained our power intermittently for about 5 hours. And it created uncertainly that kept resolving and then degrading over and over. It reminded me of how my energy waffled during my early struggle with ME/CFS.

Some days I couldn’t walk across the room without pain and exhaustion. Then, miraculously, the next day I could walk down stairs and even wash dishes feeling energized and ‘normal’. Of course the next day, I struggled just to find the energy to sit up and eat. Then I would feel decent for two days. Then a crash. The negative cycle repeated over and over. It was beyond frustrating, it was infuriating. And I felt helpless and victimized. No one had any answers.

The intermittent energy felt by every patient who struggles with ME/CFS makes it a cruel disease. When I finally started taking control of my energy expenditures, I began the path to recovery. How do you keep your energy levels consistent? 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

2 Comments

ME/CFS Stress – Letting Things Go

10/23/2012

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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. 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, 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, a heavy load of stress can keep you from recovery. For me, the ME/CFS 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.

So today, I make use of my hard won ME/CFS 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? What are your successful 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

2 Comments

ME/CFS Hope – Take Action

10/16/2012

4 Comments

Dalai Lama

Last week 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. 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. 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 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

4 Comments

ME/CFS/Fibro Isolation - Stay Connected

10/9/2012

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I spent the last week and a half in Florida taking care of my mother after her heart procedure. I am pleased to report that she is doing well and feeling much improved. Thanks for all your good wishes.

Since my mother isn’t internet savvy, there was no web connection in her home. After a couple of days, I was feeling isolated. After I week, it seemed like I was in Antarctica except for the sweltering heat and humidity outside. Of course I began to think about my struggle with ME/CFS/Fibro and how isolating it was especially in the mid nineties when personal daily use of the internet was in its infancy. Now it’s a blessing to have so much information and community available without requiring a huge expenditure of energy. Even half an hour or an hour a day can give a housebound ME/CFS/Fibro sufferer a link to family, friends, work and the greater ME/CFS/Fibro community. If you’re not reaching out to stay connected, start today. When you’re sick, an important part of your support network is encouragement and knowing that people who care are thinking of you. And the resources on the web about ME/CFS/Fibro can be transformational as well as informative.

After spending time with my mother, she has determined that it’s time for her to come north again where she has more support. We’re both back in New England now. She will be staying with me for a few months and then my sister as we figure out a plan for her going forward. She knows she’ll do better where she has less isolation and a built in support group. We’re pleased that she recognized this on her own.

And as our family takes on this new living arrangement with two generations under the same roof, I’m making sure that I’m connected to my friends and community for support. How are you staying connected with family, friends and the ME/CFS/Fibro resources on the Web? What strategies keep you connected? 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

0 Comments

ME/CFS Energy – Intermittent

ME/CFS Stress – Letting Things Go

ME/CFS Hope – Take Action

ME/CFS/Fibro Isolation - Stay Connected

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ME/CFS Energy – Intermittent

ME/CFS Stress – Letting Things Go

ME/CFS Hope – Take Action

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