Category: Attitude

ME/CFS Optimism – Brighter Days

3/16/2021

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

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ME/CFS Choices - The Holiday Bustle

12/8/2020

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We are all struggling with the pandemic caused by Covid-19. For many, the virus has touched them directly, either through illness of loved ones, even death, or being at daily risk in an essential job. For many, the economic hardships are threatening the survival of their families. For many, the separation from loved ones is causing emotional and mental health problems, especially for our isolated elderly. We are all trying to make sense of the conditions of the pandemic which have become the new normal.

And now, we are in the midst of the holidays which are usually a blur of activities in addition to the normal work and family commitments. But this year, we are being asked to forgo much of it. To stay in our limited circles in order to stop the spread of the virus. To ease up the burden on our hospitals, to even save lives.

For those of us who have spent many holiday seasons struggling with ME/CFS, this request isn’t as hard to accept. We get the pace that necessitates staying home. We understand the sadness of isolation. We have lived with forgoing much of the holidays.

This year, everyone is in a similar place for a completely different reason. And although Zoom is getting old, it is a way to connect that we didn’t have in the past.

How are you planning to spend the holidays? What are you paring back? What will 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

11/24/2020

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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 Attitude – What Others Say

9/22/2020

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When you’re struggling with ME/CFS, it can be a daily challenge to keep your own negative attitudes in check. It’s all too easy to fall into the trap of wasting precious energy grinding about the things you can’t do, the thoughts you can’t keep straight and the important people in your life for whom you can’t be present.

It becomes even more challenging when you have to deal with the negative attitudes and insensitive comments of others. One group says ‘you look OK to me’. Then there are the ‘doubters’ who look at you as if you’re either physically lazy or mentally weak. And then you face the curious crowd who seem interested in your illness only to the extent that they want to tell you about themselves or their sick friend. It’s hard to know what to say without being irritated (only to confirm their assessment of your mental weakness) or rude which can alienate people whom you otherwise value in your life.

Fortunately for most, there are a few steadfast supporters, family members or friends, who get it and want to support your path back to health in whatever way they can. And even these caring people can say the most insensitive things at times. When I heard these comments, I donned my writer’s thick skin which I acquired as the result of many tough critiques.

What do you say when people make insensitive comments? Do you react at all? 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 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

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ME/CFS Crash Triggers – What Do You Avoid?

7/21/2020

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The last few days have been hot and muggy in New England. Summer is definitely here. Over the weekend we were doing some yard work and were working up a sweat. I commented that I wanted to go for a swim and my son remarked that I don’t swim. I only float. From his perspective, it was true. My version of swimming is mostly with flotation – usually a noodle. And I definitely don’t swim strokes over any distance. But it hasn’t always been this way.

Before I struggled with ME/CFS, I swam laps in a pool every day at lunch or early in the morning if my schedule allowed. Then came ME/CFS and all that went away. Skip forward several years to when I was finally following the protocol and getting better. I was avoiding push/crash cycles and feeling stronger each month. Then I got the bright idea to try swimming again - major crash. More time passed and I was back on track and feeling stronger. Yes, I tried swimming again – another crash. Full disclosure, I did this three times. What was I thinking? I never tried to swim again. Even after I climbed Kilimanjaro, I was afraid to try swimming again.

My brain is now hard wired to avoid swimming. Even though it makes no sense, somewhere inside me I still fear that swimming will trigger an ME/CFS crash. I used to think I was crazy for still thinking this but I came to realize that instinct is important in survival and that I’m not much of a gambler. What crash triggers have you learned? What do you avoid? 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 Emotions - Droughts and Deluges

6/30/2020

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Early summer weather in New England can vary dramatically day to day. This year is no exception. The normal spring rains which enable the flowering of bulbs and perennials have been alternating with oppressive dry summer like heat waves. Cold heavy rain for days followed by sun baked days approaching 95 degrees. Last week the weather forecasters were a buzz about the storms moving up the eastern seaboard laden with needed water. As the front got closer, things shifted to warnings about flooding and washouts. And of course I began to think about the constant emotional peaks and valleys I experienced when I was struggling with ME/CFS.

As with all emotions that we actively fight to contain, they are held at bay by intentional shoring up with periods of overspills which always seem to be triggered unexpectedly. The cruelty of ME/CFS only serves to amplify the intensity of these highs and lows. My first year was full of frustration with the medical community that labeled me as a head case. With few exceptions I was looked upon as ‘mentally weak’ and in need of therapy. After a period of permitting that negativity to cling to me, I finally rejected it. But I was still left with a pattern of extremes where sometimes the skies would dump a deluge of emotions and I would struggle to tread water. After climbing out of that, I would experience a period of emotional drought when I could stay focused on the protocol and the slow but observable progress toward getting well again.

This focus helped me to eventually steer away from emotional lows and to avoid riding the drought and deluge roller coaster. How do you shore yourself up? 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 Distractions – Stay on Plan

6/9/2020

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I had a plan for the last two weeks but it didn’t play out the way I’d envisioned. Honestly, I can’t remember how things got so off track. Maybe I was trying to juggle too much or maybe it was the reality that too many variables were in play. I was truly over ambitious. Of course, this reminded me of when I was struggling with ME/CFS and it took so long for me to finally get focused on the plan – the single focus plan.

During the beginning of my struggle, I was riding the rollercoaster of push/crash. I had no consistent plan for managing my illness. Each day was a question mark. How was I going to do today? How would I feel? And this lack of planning only made me feel worse. Then I finally understood that all the distractions of life – all of the activities – were keeping me from getting well again. I needed to ignore the distractions and focus on saving my energy and using it with discretion. I needed to stay with the plan.

So the warmer weather is here. The summer will be filled with activities. It will be a time that pushes our wellness plans to the limit. What are your strategies for staying on plan? 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 Hope – Paired with a Wellness Plan

5/19/2020

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While I was in the depths of my struggle with ME/CFS, I had the opportunity to be seen in a Boston clinic where I thought they were familiar with ME/CFS. The first doctor I saw there, after my complete lab work up and physical exam, was truly unhelpful. He told me that there was nothing physically wrong with me and that I should go home and “have hope”. At that moment, he was the recipient of all the rage about having ME/CFS that was pent up inside me. His eyebrows may still be singed.

When I finally started working with another doctor at that clinic, and treating myself like a case study of one, I began to see slow but real progress. It was then that I opened up to a collaboration of hope paired with a wellness plan. As I worked through my physical illness and worked with my daily patterns, I also began to work on my attitude. Prior to ME/CFS, I was an optimist by nature. But ME/CFS had tainted my outlook. It was beyond frustrating to be struggling with a physical illness that almost no one understood or even acknowledged to be real. So, I began an intentional effort to raise my spirits and have some hope for recovery. As I look back now, this was only possible because I was beginning to see glimmers of physical progress and I had determined to devote my immediate future to being well again.

I understood that hope without a focused effort to be physically well is equally as ineffective as a wellness plan without hope. For me, they needed to be paired. How do you balance your physical recovery plan with your outlook? 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 posting on Tuesdays. And consider being part of the conversation.

Be Well Again,
Martha

2 Comments

ME/CFS Familiar Territory – Stay-At-Home

4/21/2020

2 Comments

In the struggle to deal with ME/CFS, we often feel as if the whole world is moving along and we’re forced to cut back and rest. We feel constricted in our energy to function and participate in life. Meanwhile, everyone else can go and do without a thought about their health.

Covid-19 has changed all of that. Everyone else is now thinking about their health. Worldwide. And those of us who are blessed to have safe homes and enough food, are quarantining and are restricted in our movements outside of our homes.

Over the years that we’ve spent sick with ME/CFS, we’ve struggled to explain to others what we’re going through in terms of isolation. The separation from others, the long periods of time by ourselves, the depression that creeps in. The endless “I’m sorry I can’t be with you todays”. The feeling that we’ll be stuck like this for months and possibly years. And the helplessness that goes with it.

I don’t think that anyone reading this blog is happy to have company in this isolation due to the pandemic. But I don’t think that we’ll need to explain this part of our struggle with ME/CFS anymore.

To all of you, please, stay safe. Stay home. And don’t hesitate to call on friends and neighbors to bring you what you need. ME/CFS is an under lying condition that further compromises our risk of contracting the virus. 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 Optimism – Brighter Days

ME/CFS Choices - The Holiday Bustle

ME/CFS Attitude – Find Thankfulness

ME/CFS Attitude – What Others Say

ME/CFS Lost Opportunities? – Just Postponed

ME/CFS Crash Triggers – What Do You Avoid?

ME/CFS Emotions - Droughts and Deluges

ME/CFS Distractions – Stay on Plan

ME/CFS Hope – Paired with a Wellness Plan

ME/CFS Familiar Territory – Stay-At-Home

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