Category: Opinions

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

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ME/CFS Attitude – Highs and Lows

2/6/2018

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 Common Ground – Not What Divides Us

10/24/2017

0 Comments

Our political discourse these days seems to have devolved into a contentious ‘Us and Them’ battle. Anything, no matter how insignificant, that could possibly make the ‘other guys’ look bad becomes fodder for the media to ramp up and exploit for days and weeks. Meanwhile, nothing is getting done. No matter what your political view point, this nasty gridlock is frustrating. I recently read about a ridiculous series of political volleys and it got me thinking about how I sometimes see this same illogic in the ME/CFS medical field.

As patients struggling with ME/CFS day after week after month after year, we are always hopeful that a significant new medical or research break through will be the answer that liberates us from this cruel disease. And I can only imagine how hopeful researchers and medical practitioners can be that they are onto a solution or an effective treatment that will be ‘the silver bullet’. They can seem just as certain that they have the answer and honestly, sometimes severely critical of other ideas being wrong. With resources and money scarce in this economy, it can start to sound a bit like our political discourse. But realistically, we all know that ME/CFS is a waste basket diagnosis. There are many versions of ME/CFS lumped in together. They could all be onto the key to different diseases that could be culled out of the waste basket.

In the meantime, as patients, we need to focus on our common ground and support each other as we struggle to get well. Work to understand our own versions of this cruel disease, follow the clues of our patterns and carefully pace, pace and pace. Have you found any ‘common ground’ strategies to share? 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 Loss – Can be Temporary

10/17/2017

2 Comments

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

2 Comments

ME/CFS Energy – Deflecting the Negative

8/22/2017

2 Comments

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

2 Comments

ME/CFS/SEID Perception – The Crazy Stigma

3/7/2017

4 Comments

Over the weekend I was talking with someone about how people change when they go through personal struggles that challenge them to their core. By comparison, other difficulties in everyday life are less stressful and seem easier to handle. And of course I began to think about my ME/CFS/SEID days and how much I have changed – maybe even gained – in my more robust ability to weather the tribulations of a healthy life.

This person didn’t know me when I was sick and I was about to mention my ME/CFS/SEID struggle but I hesitated. The stigma of ‘mental weakness’ or crazy has always been attached to ME/CFS/SEID. Whenever I had told someone that I was once sick with ME/CFS/SEID, I would see that association flash across a persons face. Suddenly, even though they had only seen me healthy, I was dropped down a few notches in their estimation. I became less then whole. Damaged with the potential to be weak or needy. Maybe even a burden. So I hesitated.

Then I thickened my skin and plunged forward, knowing that the more we talk about ME/CFS/SEID, and the more we engage with the main stream, the better the odds of getting to the answers for this cruel disease. And as I voiced that I had once been bedridden with ME/CFS/SEID, the response was OK. Better than I expected but it was still tinged with a bit of stigma. And it renewed my determination to be part of the conversation because so many of those who are struggling with ME/CFS/SEID frequently disappear from view.

Are you getting the crazy stigma when you talk about ME/CFS/SEID? How are you dealing with it? 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/SEID Judgments - Dealing with the Stigma

7/5/2016

0 Comments

I hurt my knee recently and had to wear a brace for a while. My doctors’ orders included resting with my leg up and wearing the brace 24/7 which kept my knee locked in an extended position.

The first few days were relaxing and I got pampered. But by the fourth day I was sick of being sick. And of course this reminded me of my struggle with ME/CFS/SEID and the endless, often dark tunnel of rest and restricted activities that took away four years of my life. My present situation was easy by comparison.

So I adhered to instructions and did my best not to bend my knee. This required keeping my leg stiff as I walked and navigated stairs. And I figured out how to drive with my left leg straight out jammed up under the dashboard. As I limped about doing my errands I quickly realized that people were staring at me. And not the casual glance that strangers exchange when they pass each other in a public place. These were long, hard, head turning stares. Since I wasn’t on crutches and my brace wasn’t visible under my capris pants, I was an oddity of some kind – permanently damaged and handicapped. I felt the same judgment that I had suffered when I was struggling with ME/CFS/SEID. Many people labeled me as weak and inferior – depressed, lazy and a hypochondriac. This stigma was almost universal because most of the medical world had determined that I didn’t have a real physical illness. And even after I was fully recovered, the stigma remained as people assumed that I was weak and could mentally implode again at any moment.

This recent experience has been a sharp reminder of the mental fortitude required to deal with the many cruelties of ME/CFS/SEID. How do you fend off the judgments of 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 a weekly posting on Tuesdays. And consider being part of the conversation.
Be Well Again,
Martha

0 Comments

SEID/CFS Irony – Mind Over Matter

2/16/2016

4 Comments

I did a lot of surfing and exploring of the definition of irony before I would even consider using the word. As many have experienced, there is a current culture of ‘looking down one’s nose’ at the ignorant use of the term irony - Alanis Morissette a prime example of being taken to task by many. I have decided that I’ll risk it. Please feel free to chide me if your take is different.

Here’s my perspective. We live in a culture where people are recognized, honored and even championed when they ignore the physical signals of their bodies and push themselves to the brink of their capacity - to a breaking point in the pursuit of some objective. It’s lauded as the ultimate achievement of Mind Over Matter. We see this most dramatically in athletic competitions – the Olympics come to mind - but it also has a formidable presence in the work place, at home and even in personal leisure pursuits. Ultimately, we are held up to the ‘You Can Do It All’ standard. And in a lot of situations, we manage to get away with it for a while.

Then SEID/CFS takes up residence. I don’t think that it’s a coincidence that many SEID/CFS sufferers would label themselves as Type A personalities prior to SEID/CFS. And so when we are challenged with something that threatens us to the core of our physical capacity, what’s the instinctual ‘go to’ solution? Yes – Push Through It. Mind Over Matter. And we are shaken when this not only doesn’t work but it makes SEID/CFS worse. Not to mention the opinions expressed by others who observe and conclude that we’re soft, undisciplined, burnt out or just depressed.

So here’s the Dramatic or Tragic Irony. The solution to personal challenges that has been engrained in us since childhood – Mind Over Matter – is the complete reverse of what is required to get control over SEID/CFS and to ultimately recover. And it is delivered, wrapped in an ugly package of judgment that we’re weak and in some way inferior. Did I get it right? 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

SEID/CFS Attitude – What Others Say

9/15/2015

2 Comments

When you’re struggling with SEID/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

2 Comments

ME/CFS Reality – Commit to Being A Patient

8/19/2014

14 Comments

I recently received an e-mail from a physician 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? What are your strategies? 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.

I’ll be away next week so look for my next posting on Tuesday September 2nd. And consider being part of the conversation.

Be Well Again,

Martha

14 Comments

<<Previous

ME/CFS Attitude – What Others Say

ME/CFS Attitude – Highs and Lows

ME/CFS Common Ground – Not What Divides Us

ME/CFS Loss – Can be Temporary

ME/CFS Energy – Deflecting the Negative

ME/CFS/SEID Perception – The Crazy Stigma

ME/CFS/SEID Judgments - Dealing with the Stigma

SEID/CFS Irony – Mind Over Matter

SEID/CFS Attitude – What Others Say

ME/CFS Reality – Commit to Being A Patient

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