Category: Perspective

ME/CFS Repetition – Keep Your Sanity

7/5/2022

This summer in New England has seen a lot of hot weather. It hasn’t been two or three days in a row. It’s been a long conga line of hot dry days. Day after day and week after week. And it’s only the second week in July. I can’t remember the last time we had a good long rain. I’m not an AC lover but it’s been on almost constantly. And inevitably when I get into drawn out repetitive situations, I think about my struggle with ME/CFS.

When I finally quit riding the roller coaster after two brutal years and settled into the protocol, it was a long, repetitive, frustrating path. Whenever I looked forward, the repetition seemed to spread out endlessly before me. Like this long hot summer, it didn’t seem like it would ever end. I had to find the courage to settle in. I needed to take it a day at a time. I needed to stick with the recovery plan and work it every day. Honestly, I couldn’t think about how slow the pace was because it drove me crazy. Much like this summer, I don’t think about how many more hot days are coming. I take it day by day. Right now, there’s another gorgeous sunny day outside my windows. The kind I hoped for in the dead of winter.

My best days of dealing with the slow repetitious pace were when I looked over my health log and saw the real progress. I was slowly making my way back to full health. And the proof was right there written in black and white. It was a balm for my sanity. Are you on the slow, repetitious path that the protocol requires? What helps you stay sane? 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 Progress - Look How Far You've Come

6/7/2022

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There’s an endless fence that runs along the edge of our yard. The mower can’t get the weeds that grow close to it so not being fond of weed whacking, we’ve been watching them grow and grow. After discussing how unsightly they had become, we decided to dig up the weeds along the fence and mulch. You probably know where this is going.

After three hours of digging, pulling, hauling and mulching, we had completed four sections. We were sweaty, caked with dirt and tired. My son observed that the fence was so long that it didn’t feel like we made any progress for all the work we’d done. Of course, it reminded me of my struggle with ME/CFS and the days that I felt the same way about how slow my recovery seemed to be. Some weeks, I didn’t think I was any closer to being well again despite all my efforts at following the protocol and ‘doing the right things’.

Standing at the fence, it was my turn to say, “Don’t look at how far we have to go, look at how far we’ve come.” That’s what my advocate said to me when I was struggling with ME/CFS and couldn’t see the improvements in my health. It was helpful to hear, “six months ago, you had to sit during a shower and someone had to wash your hair because you couldn’t hold your arms up over your head for that long.” It was true. Six months later, I could take a shower standing up. OK, I had to rest before and after but it was progress.

So, we finished eight more sections in our third round of digging and mulching. We still have a long way to go – not quite half way yet but what we’ve finished looks great. And when you think about the long path to recovery from ME/CFS, remember to look at how far you’ve come. Are you seeing progress? 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 Progress – Where’s Your Focus?

4/6/2021

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I recently participated in and IEP meeting – Individualized Education Plan – for a young friend. For part of the time, people talked about her successes. But for most of the meeting, people pointed out her weaknesses and where she needed to improve. And understandably, this is the point of the meeting. But I went away feeling that her accomplishments were impressive based on expectation. And there was no place to honor that progress. Of course it got me thinking about my struggle with ME/CFS and the way I could only focus on my weaknesses for a long time.

My first two years of struggling with ME/CFS were all about my failure to succeed at my life. All I thought about was what I wasn’t doing, who I was letting down and how I wasn’t figuring out what had happened to me. My focus was on what was going wrong and how it was my fault. One huge negative focus. Finally, after a horrendous crash, we decided to change our approach to ME/CFS and at the same time to change our focus. We started to move away from how I was failing and to focus on how I was progressing. The focus became centered on what I did that day and how I built on that the next day. Yes I had setbacks but we focused on the patterns that gave me positive results and repeated them.

So how are you making progress toward wellness? Where’s your focus? 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 Optimism – Brighter Days

3/16/2021

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It happens to me every year around the middle of March. Although I don’t see the signs of change in myself yet, one of my window plants catches my notice. There’s a new vibrancy in its color or maybe even a tiny sprout where a dead leaf has been dropped. Something triggers my attentiveness and before I’ve cognitively made the connection, I’m trimming, repotting and fertilizing all my plants.

What my plants have all been responding to, and what I’m also caught up in, are the longer days with brighter light streaming in my windows. And I think back to my ME/CFS days and remember how hard it was day after day, week after week and month after month to keep my spirits up. To remember my resolve to keep to the protocol, to allow myself the space to heal, and most importantly to cut myself the mental slack I needed. The only time I didn’t need to be intentional about being upbeat was when the light began to get noticeably brighter at this time of year. There’s a reaction to the increasing daylight that we experience on a cellular level. I’m sure there are reams of scientific studies that have investigated this response but I don’t need to read them. My sense of renewal and optimism are palpable. And during my ME/CFS struggle, it was natural to see this NOT as the marking of another year of this cruel illness, but as the beginning of the year when my progress would get me to the next health plateau – the next stage of recovery.

I’m hoping that you are able to harness this brighter light and natural source of anticipation to carry you successfully along your path back to wellness. 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

ME/CFS Attitude – Find Thankfulness

11/24/2020

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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 Lost Opportunities? – Just Postponed

8/11/2020

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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 Optimism – Brighter Days

4/7/2020

0 Comments

It happens to me every year around the beginning of April. Although I don’t see the signs of change in myself yet, one of my window plants catches my notice. There’s a new vibrancy in its color or maybe even a tiny sprout where a dead leaf had dropped. Something triggers my attentiveness and before I’ve cognitively made the connection, I’m trimming, repotting and fertilizing all my plants.

What my plants have all been responding to, and what I’m also caught up in, are the longer days with brighter light streaming in my windows. And I think back to my ME/CFS days and remember how hard it was day after day, week after week and month after month to keep my spirits up. To remember my resolve to keep to the protocol, to allow myself the space to heal, and most importantly to cut myself the mental slack I needed. The only time I didn’t need to be intentional about being upbeat was when the light began to get noticeably brighter at this time of year. There’s a reaction to the increasing daylight that we experience on a cellular level. I’m sure there are reams of scientific studies that have investigated this response but I don’t need to read them. My sense of renewal and optimism are palpable. And during my ME/CFS struggle, it was natural to see this NOT as the marking of another year of this cruel illness, but as the beginning of the year when my progress would get me to the next health plateau – the next stage of recovery.

I’m hoping that you are able to harness this brighter light and natural source of anticipation to carry you successfully along your path back to wellness. 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 Transitions – Progress to Being Proactive

3/17/2020

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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

2 Comments

ME/CFS Progress - Look How Far You've Come

10/29/2019

2 Comments

There’s an endless fence that runs along the edge of our yard. The mower can’t get the weeds that grow close to it so not being fond of weed whacking, we’ve been watching them grow and grow. After discussing how unsightly they had become, we decided to dig up the weeds along the fence and mulch. You probably know where this is going.

After three hours of digging, pulling, hauling and mulching, we had completed four sections. We were sweaty, caked with dirt and tired. My son observed that the fence was so long that it didn’t feel like we made any progress for all the work we’d done. Of course, it reminded me of my struggle with ME/CFS and the days that I felt the same way about how slow my recovery seemed to be. Some weeks, I didn’t think I was any closer to being well again despite all my efforts at following the protocol and ‘doing the right things’.

Standing at the fence, it was my turn to say, “Don’t look at how far we have to go, look at how far we’ve come.” That’s what my advocate said to me when I was struggling with ME/CFS and couldn’t see the improvements in my health. It was helpful to hear, “six months ago, you had to sit during a shower and someone had to wash your hair because you couldn’t hold your arms up over your head for that long.” It was true. Six months later, I could take a shower standing up. OK, I had to rest before and after but it was progress.

So this morning before the heat cranked up, we finished eight more sections in our third round of digging and mulching. We still have a long way to go – not quite half way yet but what we’ve finished looks great. And when you think about the long path to recovery from ME/CFS, remember to look at how far you’ve come. Are you seeing progress? 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 Goals – Celebrate Each One

5/21/2019

0 Comments

The last couple weeks have been non-stop activity. We have been celebrating a friend’s graduation from college with senior shows, events, special dinners and of course the official commencement ceremony. She has been focused on getting here for the last four years and has been successful due in major part to her focus and undistracted commitment. And of course I’ve been thinking about my struggle with ME/CFS. How grateful I am to be well again and able to fully participate in the celebrations but also because she has succeeded the same way that I succeeded in recovering from ME/CFS.

After struggling for several years, trying everything we heard about and searching for the doctor who could give us the answers to my illness and the magic pill so I could get my life back, we finally realized that there wasn’t an easy answer. So we decided to try a new approach. The long term goal was to be fully well again. But we knew that there were many small goals between the present and my healthy future. We had to string many smaller goals together in order to reach the ultimate wellness goal.

And so it has been with my friend. Over the course of four years, she has set her goals one semester at a time. And for me it was this same step by step approach that finally worked. I broke the whole goal down into reasonable chunks. And as I achieved each goal, we celebrated. I’m not talking parties. Just simple recognition of what it took to get there and acknowledging the progress. This gave me the validation to keep going.

So what’s your next short term goal on the road to wellness? What have you celebrated lately? 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

<<Previous

ME/CFS Repetition – Keep Your Sanity

ME/CFS Progress - Look How Far You've Come

ME/CFS Progress – Where’s Your Focus?

ME/CFS Optimism – Brighter Days

ME/CFS Attitude – Find Thankfulness

ME/CFS Lost Opportunities? – Just Postponed

ME/CFS Optimism – Brighter Days

ME/CFS Transitions – Progress to Being Proactive

ME/CFS Progress - Look How Far You've Come

ME/CFS Goals – Celebrate Each One

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