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

ME/CFS Attitude – What Others Say

4/17/2018

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

ME/CFS Optimism – Brighter Days

4/3/2018

It happens to me every year around the end 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 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

ME/CFS Attitude – Highs and Lows

2/6/2018

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

ME/CFS Attitude – Find Thankfulness

11/21/2017

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

ME/CFS Progress – Where’s Your Focus?

10/31/2017

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

ME/CFS Loss – Can be Temporary

10/17/2017

During my darkest days of struggling with ME/CFS, I mourned the loss of my healthy life. The life that allowed me to run about with endless energy until I was spent, needing only a few nights of solid rest to recover. And I held onto that loss for a while allowing it to further deepen my mood and draw precious energy from what little I had. It was sometimes combined with resentment and a bit of self-blame enabling a solid blow to my psyche. Fortunately, this was not a place I could live in for long.

As I began to understand that my medical practitioners, although most were well intentioned, had no clue what was wrong with me, I knew that it was going to be a hard road back to a healthy life. And for me, it wasn’t an option not to try. I could not accept this loss of my healthy life as a permanent chronic condition although that was the opinion I received over and over. OK, I readily admit that I’m an optimist at heart and stubborn as well.

As I began to treat myself like a case study of one, the healing started, slowly - literally, painfully slow. And it wasn’t until I was fully well that I began to find others who had also fully recovered. Unfortunately, ME/CFS is so stigmatized that even former patients don’t talk about it. So despite the pervasive message that patients don’t fully recover from ME/CFS, it’s not true. ME/CFS can be temporary. 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

ME/CFS Energy – Deflecting the Negative

8/22/2017

I’ve been thinking a lot about the ‘energy envelope’ that most ME/CFS patients work to conserve. When I was sick, this wasn’t part of the understanding of ME/CFS as much as it is now. But even today, the emphasis is on physical energy and what we decide to spend it on. And yes, we all have limited physical energy reserves and being intentional about how they get used is critical to our struggle to be well again.

But often, I think that we forget that psychological and emotional energy is also a part of that ‘energy envelope’. We don’t have to move out of a chair to burn up a lot of energy worrying about our responsibilities or being angry at the medical system or berating ourselves for being sick. It all burns up precious energy and runs us down. Then we encounter others who further drain our energy by off handedly diagnosing us per some stereotype or the latest news blurb about ME/CFS. It eats up a lot of emotional and psychological energy dealing with these outside stresses as well.

One of the strategies that I finally developed was deflecting this negative psychological energy. After allowing myself to absorb too much of it, from both external sources as well as self inflicted, I realized that it was just as much of a drain on my precious ‘energy envelope’ as actual physical activity. So I started with myself. I built a wall around my psyche that refused to allow negative self judgment to enter. It was such a wonderful release to let all that self berating slip away! Then, like a skilled matador, I learned to step aside when those negative external people came into my space and I let those toxic attitudes slide right by me. I refused to own them or even deal with them.

Honestly, I still do this today. I’ve learned through my struggle with ME/CFS that I can choose not to deal with other peoples’ baggage about my illness or anything else. How do you deal with conserving your psychological energy? What strategies work for you? 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 my next post on the Tuesday after Labor Day. Wishing you a restful end of Summer.

Be Well Again,
Martha

ME/CFS/SEID Negativity – Walk Away from It

6/6/2017

Recently I was talking with an acquaintance about a personal challenge he was working through. As we began to explore some of his options, the conversation quickly turned negative as he recounted events in his past that he blamed on others and offered as the reasons why he was being held back now. In contrast, I have a friend whose childhood and youth was so challenging, I’ve wondered if I could have come through it. And yet, she is one of the most nurturing, kind and upbeat people I know.

Of course, I think about my struggle with ME/CFS/SEID and I honestly admit that I spent a lot of wasted time in negative territory at the beginning. The total loss of control of my life paired with the frustration of no answers, led me down a negative path. It took a couple years of indulging in the negative before I realized that it was not only useless, it drained me even more than the ME/CFS/SEID itself.

When you’re struggling with ME/CFS/SEID, it’s understandable to harbor anger as well as some negativity toward your situation and even yourself. But it only saps our already limited energy. In order to walk that path back to health, leave negativity behind you. Walk away from it. You’ll be more energized and less burdened. How do you deal with the negative? 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

ME/CFS/SEID Emotions - Droughts and Deluges

5/23/2017

Spring 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 100 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/SEID.

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/SEID 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

ME/CFS/SEID Optimism – Brighter Days

3/28/2017

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/SEID 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/SEID 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