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

ME/CFS Transitions – Progress to Being Proactive

3/17/2020

Three years ago we took in an abandoned Maine Coon cat so she could be transitioned to a new home. Her prior life was with an elderly woman who dotted on her and made her quite comfortable. Then, her owner became ill and was in hospital care for a month. During that time, the cat lived alone in the house and a neighbor came in to feed her. She had always been a reclusive cat who disliked strangers so the month was traumatic. Her owner wasn’t able to return to her own home so we ‘captured’ the freaked out cat and deposited her on our heated porch. Needless to say this transition had been hard. Watching her struggle reminded me of myself when I was first diagnosed with ME/CFS.

Being ripped out my normal life and dropped into the wastebasket of ME/CFS was horrifying. I hated it. I railed against it. I expended a lot of energy being angry with my situation and the medical establishment. The cat on our porch did the exact same thing. She was clearly pissed off. When she wasn’t eating or sleeping, she hissed and growled at everyone except me. She even swatted if the wrong person got too close. She clearly wanted affection and purred loudly when I pet her but she was confused and mad. Who wouldn’t be?

She wanted her old life back just like I did. But the path for her to find a new home was not to go back the way she came. And so it was with me. I had to progress forward to find a new path in order to regain my health. I had to progress to being proactive – to taking responsibility for my recovery and to stop wasting energy on the blame game. The cat on our porch didn’t have the tool of reasoning. I couldn’t sit down with her and explain that she was just in transition and that we were looking for a permanent home for her – a new place that would be warm and loving and much like her old home. In the end, we did find her a new home and a new elderly woman who dotted on her.

Before I accepted my struggle with ME/CFS, I was in that same transitional place. If you’re still there, It’s time to progress forward into taking proactive control of your illness and your path back to wellness. Are you out of transition? 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 Halt – When we had other plans

3/3/2020

2 Comments

Recently we were driving along with a schedule for the day. Then bang. We had a tire blow out. We were able to safely get to the side of road but that one event shot holes in the plan for the day. As we began to assess the condition of our spare tire and whether all the parts of the jack were in the truck, I was reminded of how ME/CFS suddenly forced me to change my plans.

There I was, tooling along with my life plan and then suddenly – bang – I was so ill that I was bedridden. And after going through the seemingly endless screening process, I was diagnosed with ME/CFS. Not great news.

Back on the side of the road, we thought we had everything to change the tire and started in. Then we realized that the jack crank was missing. Great – that meant that we had to raise up the car one half turn at a time. As I knelt by the car, inserting the lug wrench, turning a half turn, removing the lug wrench, moving it back to the other side, then reinserting and turning a half turn – over and over and over – I kept thinking about how ME/CFS required me to invent tools to get well because the normal methods didn’t work. And getting well was agonizingly slow. And repetitive. And repetitive. And really repetitive.

So having that flat tire abruptly changed my plans and it took more time than it should have because we didn’t have the right tools. And getting ME/CFS abruptly changed my life plans and it took more time to get well from ME/CFS because we needed to invent the right tools. What tools are you inventing? What tools are you learning from others? 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 postings on Tuesdays. And consider being part of the conversation.
Be Well Again,
Martha

2 Comments

ME/CFS Support - Words of Appreciation

2/11/2020

0 Comments

It’s almost Valentine’s Day. One of those loosely historical, made up days to sell stuff. OK that was cynical. But we seem to have developed an entire year of these almost monthly events which push us to do or buy something. Or feel out of it if we don’t.

For me, today is an exception. When I was struggling with ME/CFS, I wasn’t very good at recognizing all the kind and thoughtful things people did for me - Family, friends and strangers too. Unfortunately, for a good part of my struggle, I was seeing everything through a veil of angst – anxiety about my situation tinged with hope for resolution. This sometimes kept me from seeing the people around me who cared and wanted to support me. I often forgot, caught up in my own wrestling match of emotions and physical malfunctions, that those around me were feeling some of the same helplessness – not sure of what to say, what to do or when to just be present for me.

For some reason, on the first Valentine’s Day after I was beginning to feel strong again, I felt the desire to express my ‘love’ and appreciation to those who were supporting me. It started a tradition that I still follow. Today has become a reminder day for me to stop for a moment and make sure that I let the people in my life know how much they mean to me and how much I appreciate them. Yes, that’s hokey. But I prefer it to cynicism.

Are you making time to let people know how much you appreciate them? Please COMMENT 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

2/4/2020

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 – Are Genetics a Variable?

1/21/2020

2 Comments

Sometimes realizations ooze quietly into your life and you need to look behind you to actually see them. Sometimes they arrive via a lightning bolt epiphany. My latest was the latter. Over the holidays, my mother visited and we enjoyed many family conversations but the trigger came when she looked at a picture on my desk of her mother (my grandmother). She hesitated, then asked, “Was that taken before or after she was sick?” It took my brain cells a moment or two to remember that my grandmother had been sick for many years long before I was born. She struggled to recover from either malaria or typhoid (my mom wasn’t sure which as she was a little girl at the time.) “She was in an infirmary for many years because she was so tired and couldn’t handle the family and all the farm work”, my mom continued. Click. I then asked, “Mom, weren’t you sick for a long time after your last baby was born?” “Oh yes, I just couldn’t get my strength back. I was so tired all the time. It took a couple years before I got strong again.” I was the little girl at that time. Click. Click. Click.

With a background in the scientific method, I’ve never been one to make gross assumptions based on anecdotal evidence. During my struggle with ME/CFS, we poured over the published literature looking for clues to my illness and trends in the epidemiological write ups of mass illnesses (there was virtually no research to be found specifically on ME/CFS). One piece that stuck with us was a gut certainty (now that’s scientific) that genetics had to be part of the puzzle. Not the whole, but a variable in why my illness progressed as it did when others around me recovered and went back to their normal lives.

And as those Clicks got louder, the image of the other sick woman with the swollen belly and dark raccoon eyes in the doctor’s waiting room came back to me. Our onset and illnesses were mirror images. So once again, this certainty of a genetic component clicked into place. This time it had three generations of anecdotes but still no scientific data.

Do you have any gut anecdotal feeling about the underlying causes of your version of ME/CFS? Since it’s a wastebasket diagnosis, we could all be right. 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 New Year - Take a fresh look

1/7/2020

2 Comments

It’s a hackneyed part of our culture that everyone makes New Year resolutions which we earnestly pursue for one month. Then we return to our old habitual patterns. And every year we resolve not to let that happen yet again. So here we are. For many, it’s a desire to improve one’s health. If you’re struggling with ME/CFS, the stakes and the rewards are much higher than the average person who just wants to look or feel healthier. For us, it’s about reclaiming our lives and our ability to be fully functioning and present – to be well again.

I encourage you to take a fresh look at your version of ME/CFS. Hopefully you are keeping a daily log of your activities, sleeping/resting times, symptoms and medications. Step back and take an objective look at your patterns. Look for periods of wellness. What preceded those periods? Replicate those patterns. Look for periods of ill health or crashes. What preceded those periods? Don’t repeat those patterns. Look at your symptoms. Which are the most debilitating? When do they flair up? How can you treat them in order to short circuit the flair up? Look at your sleeping patterns. How can you improve the quality of your sleep? How can you make your bedroom into your version of slumber heaven – light, sound, comfort and sleep aids. Your daily log needs to be mined for clues as you find your path back to wellness.

If you’ve made progress this year and you’ve managed to shed some of the symptoms that were masking your version of ME/CFS, awesome! As you take a fresh look, you may get a clearer view of the key or central issues which characterize your version of ME/CFS and some insight into new approaches, strategies and clues to your next steps. It was through this methodical periodic review that I eventually unraveled my version of ME/CFS and was able to be fully well again. What will you focus on in this New Year? 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 Holidays – Gift to Yourself

12/17/2019

4 Comments

It’s seven days to go until December 25th and we’re in the midst of many religious and cultural holiday observances. Whatever you celebrate at this time of year, we’re getting to the thick of it and we’re feeling the constraints on time and energy to get it all done. When I was struggling with ME/CFS, this was a critical decision time that determined how my holidays would play out.

Would I choose wisely and slow the pace down so I could feel reasonably well at the height of the holidays or would I keep pushing to the finish line? In my early years of struggling with ME/CFS, it was always the latter. No matter what good intensions I held, invariably I over did and was crashing thru the culmination of our holiday celebrations. It wasn’t until I began to get a taste of feeling better that I understood the importance of stopping the rush of the holidays.

This holiday season, the most important gift you give is the one to yourself. The gift of letting go of most of the Fa La La and napping instead. Watch a favorite movie. Ask a friend to pick up a specific gift item or some groceries while they’re out doing their own shopping. Order online. Linger over a hot cup of afternoon tea. Call your loved ones and let them know that you’re thinking of them and that you’re resting so you’ll be up for the holiday events. The more you give yourself the gift of rest and reasonable pacing, you will actually be giving your family and friends the gift of a stronger and more participatory you during the holidays.

Are you giving yourself the gift of energy for the holidays? 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 after the New Year. And consider being part of the conversation.

Wishing you and your loved ones a Healthy and Blessed Holiday,

In the New Year, Be Well Again,
Martha

4 Comments

ME/CFS Choices - The Holiday Bustle

12/10/2019

2 Comments

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

2 Comments

ME/CFS Attitude – Find Thankfulness

11/26/2019

0 Comments

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

0 Comments

Recovery Opinions – Some More Hopeful Than Others

11/12/2019

2 Comments

ME/CFS patients seem to be firmly in either the ‘can’ or ‘can’t’ recover camps. As one might guess, most of the opinions can to be related to whether or not each has been able to recover. And then there are the rest: fence sitters who are hopeful and want recovery to be possible.

For me, I keep coming back to what I feel is so unfair about this ME/CFS diagnosis. The fact the even though thousands of patients get this label, they actually don’t all have the same disease. So using the same treatment and approach, two patients can have completely different outcomes. Or one has great success and the other minimal improvement. Yes, I believe that ME/CFS patients can recover. Can they all recover using the same treatment? No. Can they recover using the same protocol and strategies? Call me crazy but my answer is yes.

My training as a health professional drilled into me two things: first, despite all the marvelous progress that medicine had made over the last century, we still only know and understand a small portion of the intricacies of the human body. Second, the way that we learn things is to collect data, hypothesize, test, evaluate and then collect more data, etc.

Personal data collection (yes, I keep harping on this) and successful strategies seem to be the way out for many. Have you developed any strategies that work for you? Please COMMENT 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

<<Previous

ME/CFS Transitions – Progress to Being Proactive

ME/CFS Halt – When we had other plans

ME/CFS Support - Words of Appreciation

ME/CFS Attitude – Highs and Lows

ME/CFS – Are Genetics a Variable?

ME/CFS New Year - Take a fresh look

ME/CFS Holidays – Gift to Yourself

ME/CFS Choices - The Holiday Bustle

ME/CFS Attitude – Find Thankfulness

Recovery Opinions – Some More Hopeful Than Others

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

For Books, Supplements, Sleep aids and more

Archives

Categories

Join Our CommunityEnter your email address tofollow this blog.

Archives

Categories

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