...DEFEAT Chronic Fatigue Syndrome: ...............................................................You don't have to live with it

ME/CFS Holidays – The Gift of Helping

12/4/2018

Someone asked me what I’d like for the Holidays and honestly I couldn’t think of a thing I needed or wanted. Maybe a technology upgrade but not the typical holiday gift items that one would search for while wandering the mall among the frenzied herds. When I was struggling with ME/CFS, and someone asked what I wanted for the holidays, all I could think of was my health. And of course they couldn’t give me that.

At the time, I don’t remember having the clear thought process to be able to articulate the kinds of ‘gifts’ that would have been truly helpful in supporting my recovery. With hindsight, now I can think of many that would have been much appreciated. In my younger days when I was short on cash, one of my favorite ‘go to’ gifts was the personal gift certificate. I would think of something I could do for the recipient and create a certificate that could be presented to me when the service was needed.

Imagine all the helpful things that people could do for you as you struggle with ME/CFS. Driving to appointment, cooking a meal, mowing, shoveling and walking the dog come to mind. What would you value in a personal gift certificate? What do you wish was in your helping gift? Tell us and then tell those who want to 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

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ME/CFS Choices - The Holiday Bustle

11/27/2018

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Before I was sick with ME/CFS, the holidays were a blur of activities in addition to the normal work and family commitments. A Healthy person struggled to get it all done.

Then I went through four holiday seasons struggling with ME/CFS. For two of them, I was bedridden for most of each day. As is often the norm for ME/CFS sufferers, I was pretty hard on myself. All I could think of were the special holiday things that my kids and family weren’t enjoying because of me. But I couldn’t do anything about it. So those holidays passed with me needlessly feeling down.

Then came a holiday season when I was feeling stronger – not fully well but better. And of course, true to form, I wanted to make up for the ‘lost holidays’. Lessons can be tough to learn. Gratefully, I had people around me and a voice in my own head that said, “Do only what you enjoy and can handle - let the rest go.”

Now that I am fully well, our holidays are still scaled down and we all like it that way. It’s more like a delightful sampling of what the season offers than a forced and frenzied banquet. We don’t do every activity every year. We switch it out. Our gift giving is mostly donations to charities, Yankee Swaps (even with family) and special consumables (wine, soup mixes, teas, etc). We haven’t sent cards in years. I’m thinking I might send an e-card this year. Maybe…

How do you get through this season without straining your energy limits and pushing yourself into relapses? What do you happily forego from the holiday hustle and bustle list? 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 Attitude – Find Thankfulness

11/20/2018

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When I sat down to blog about Thanksgiving, I looked at what I had written last year. I can’t do a better job of expressing how I feel about this holiday and struggling with ME/CFS at the same time. So here it is again:

Thanksgiving traditionally generates clichés about thankfulness. The mantra basically goes like this: Be thankful for what you DO have, not what is missing. Most of us would agree with this outlook. It is better to focus on the positive. But it isn’t easy to do especially when you’ve been struggling with ME/CFS for a year or for 20 years.

When I was sick, I would allow myself to indulge in some self pity around this time of year but I knew that was totally unproductive and a waste of what little energy I had. I would then get irritated with myself for my self-centered attitude and so just added more negativity to my load. But it can be unfair to expect a person who is struggling with a body that can’t handle normal activity to be upbeat, positive and ultimately thankful.

So as the rest of the world around me went about their daily routines, I would look at my life and try to find something to be thankful for. Mostly, I focused on the few people around me who understood what I was going through and supported me in large and small ways. I made a point to tell them how much I appreciated what they did.

And after I let go of the negativity toward myself, I realized that I needed to appreciate the work I did all year long. The work of getting well again. Sticking to the snails pace recovery, following the protocol when I didn’t want to and being present in my life in whatever way I could realistically handle.

Are you finding things to be thankful for? 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.

And for you and all of your loved ones,
I wish you a warm and Bountiful Thanksgiving,
Be Well Again,
Martha

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ME/CFS Perspective – Your Consent

11/13/2018

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I’ve been lucky to have many teachers and mentors in my life. They’ve come from traditional as well as nontraditional paths. 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, 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 Feeling Empty – Sleep Deprivation

10/30/2018

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I haven’t been sleeping well lately. There’s a lot going on and I’m caught up in too much brain activity. After several restless nights, of course I began to think about ME/CFS.

I remember when the exhaustion was so pervasive. I had a mental flashback to the lowest days of my ME/CFS years when even holding a glass of water was beyond my strength and the brain fog was so thick that I couldn’t remember my thoughts for more then a moment or two. It was long days of running on total empty.

It wasn’t until I understood the role that sleep deprivation was playing in my struggle with ME/CFS that I began to improve. We dissected everything about my nights in order to improve my sleep – Comfort, light, sound, timing and medication. We tweaked and tweaked. When we finally got it right, I was getting about 6 hours of solid, uninterrupted sleep every night.

So yesterday I tweaked a few things in my current sleep environment and I finally slept for 7 hours last night. Even my active brain couldn’t keep my body from finally getting some needed rest. This morning I felt a little more energy and gratitude for the hard earned lessons of my past.

What’s the status of your sleep patterns and environment? What needs tweaking? 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 Gifts – Pace Yourself

10/16/2018

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I’ve been thinking a lot about pacing - for myself, for my family, for the seemingly swirling world around me. Are we goal driven or just driven? Are we actually going anywhere? Do we arrive? Are we missing the whole point of the journey itself by never slowing down? When I was struggling with ME/CFS, I was forced to slow down. For a time, I was forced to completely stop.

It wasn’t until I began to recover, slowly but surely, that I also began to understand the ‘gift’ of being forced to slow down. Not that I recommend ME/CFS as a good path to gaining perspective on pacing your life but it was how I got the message. Making choices and pacing have become part of my new way of being. I do smell the roses now.

If you worry about what you’re missing as you struggle with ME/CFS, this quote will make you smile.

"Slow down and everything you are chasing will come around and catch you.” John De Paola

It reminds me of a Saturday morning cartoon where a dog is chasing a cat around in a circle. The cat steps off to the side and just watches the dog who continues to run around the circle. I can remember the road runner doing this to wile e coyote too.

Although ME/CFS is not the preferred method for receiving the ‘gift’ of pacing, it is the way we’ve received it. Open it up and appreciate the message. How are you pacing? What are your strategies? 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

4 Comments

ME/CFS Reality – Commit to Being A Patient

10/2/2018

2 Comments

I recently received an e-mail from a someone who has been struggling with ME/CFS for several years. Like many of us, he has been given the ‘go home and have hope speech’, has gone to the high-priced medical clinic to no avail, and has been treated by compassionate practitioners who haven’t been able to help him either.

Now, he’s as sick as he was at the beginning. Square One. SO Frustrating. And SUCH a familiar story. So many of us have gone this route of exploring every path we can think of knowing that we have a real physical illness. And only making small inroads. Glimmers of hope that eventually fade. And often, we find ourselves back at Square One.

If you’ve read my book, you know that when I got back to square one that was when we decided to turn me into a lab rat. I literally spent a year in bed on a fixed schedule no matter how I was feeling. I allowed myself to increase my activity - in very small increments - only when I had a solid period of time without any problems. This was in many ways torture for a type A like me. But I stuck to the plan because everything else had failed. I stopped looking for the miracle and focused on unraveling the clues to my own version of ME/CFS.

The biggest obstacle I had was allowing me to be sick. To be a patient. To commit to giving up functioning for a while in order to get a normal life back down the road. And I think I needed to waste all the other time on those other paths. It drove home the point that I wasn't getting anywhere going at this half heartedly. Those were wasted years anyway so what was one more year if it paid off? I know that this is not an option for many people because of responsibilities. But somehow, it’s important to relinquish our need to find the ‘silver bullet’ and get focused on figuring out how to get well.

How do you deal with the struggle between getting well again and also having a life? 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 Change – New Beginnings

9/4/2018

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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 – as we all know, 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. Soap box – Are you keeping a daily journal?

What change will you bring to your approach to 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!

I will be off the grid for the next several weeks. I’m looking forward to the time I’ll be spending away from the distractions of technology however much I love its’ gift of connectedness. Look for my next posting on Tuesday, October 2nd and consider being part of the conversation.

Be Well Again,
Martha

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ME/CFS Lost Opportunities? – Just Postponed

8/28/2018

2 Comments

A few summers ago, I spent a weekend with my niece and her young family at the lake. My grandniece was three and was so much like my daughter was at that age – the bright smile and giggly laugh. The difference is that I could play with her, dance with her and even pick her up. When my daughter was a baby, I was in the depths of ME/CFS and couldn’t hold a glass of water let alone a fifteen pound baby. I missed my daughters’ time as a baby and toddler. Even when she was three, I was still unable to pick her up or do active play with her.

Did I miss out on an experience that I can never get back? One could look at it that way. And of course, I can’t get it back with my daughter. But spending time with my grandniece was such a wonderful gift. It was like recovering that lost experience. And my daughter was there too. She had just turned twenty-two. It was a joy to see her holding her cousin on her hip and playing with her.

If I had tried to ‘do it all’ with my daughter, I know that I would still be struggling with ME/CFS. It had such a profound hold on me that it took dedicated focus, to the exclusion of all else, to get well - even the joys of my daughters’ babyhood. I did find ways to enjoy her and be her Mom but they needed to be energetically limited. And I would do it the same again because now, and for the last eighteen years, I’ve been a full participant in my life, her life and the lives of all my loved ones. So now I plan to see my grandniece as much as possible and revel in this new opportunity to recover something that was just postponed.

Are you balancing choices that might be missed opportunities? Are you planning ways to recover them later? 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 Brain Fog – Write it Down

8/21/2018

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One morning recently, I woke up to thick fog blanketing the yard. It was so dense that it reminded me of a night last spring when I was driving home and the lingering snow on the ground was a few inches thick. With temperatures in the mid 30s, there was a wall of thick fog hanging over the snow and drifting across the roads. In high school science class I learned that sublimation is the transformation of physical matter directly from a solid to a gas without ever becoming a liquid. So the night fog was the result of the frozen snow skipping over water and going straight to cloud vapor. And it reminded me of the frustrating brain fog I had when I was struggling with ME/CFS.

Kind of like the snow, my brain seemed to skip over the natural fluidity of conversations - the ebb and flow of ideas exchanged with another. Or the transitional thoughts needed to get from a concern to a possible course of action. Concrete thoughts wouldn’t develop and instead slowly leaked out of my head like a balloon with a pin hole. I couldn’t remember what someone said a moment after they said it. It seemed to dissipate into the air without ever registering in my brain.

After denying the reality of my memory struggles for awhile, I finally came around and tried to cope with it. I started to write things down as I spoke with people and it helped me to keep the train of thought going. And when I was trying to think through something on my own, I also wrote it down. It felt stupid at first, but when it began it help, I appreciated the sense of accomplishment that resulted.

How are you coping with brain fog? What strategies have you developed? 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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<<Previous

ME/CFS Holidays – The Gift of Helping

ME/CFS Choices - The Holiday Bustle

ME/CFS Attitude – Find Thankfulness

ME/CFS Perspective – Your Consent

ME/CFS Feeling Empty – Sleep Deprivation

ME/CFS Gifts – Pace Yourself

ME/CFS Reality – Commit to Being A Patient

ME/CFS Change – New Beginnings

ME/CFS Lost Opportunities? – Just Postponed

ME/CFS Brain Fog – Write it Down

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