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

ME/CFS Gifts – Better Days

4/24/2018

I live in New England where this winter has been weird – warm when it’s supposed to be cold then cold when we expect it to be warm. I’ve had mixed feelings about it. I love the coziness of a cold winter - but not the hassle of storms and hazardous travel. I think most of us are done and ready for spring.

This week we’ve finally had some sunny warm days that reached above 60. I went for a walk and felt all the usual stirrings of spring. Of course, I knew that it wasn’t here to stay but the taste of it was enticing. I remembered back to my ME/CFS years when after a period of intentional good behavior, doing everything I knew about how to get well, I had a really good day. It was so enticing then to start my old life back – to forego all that I had learned in the hope that this was it. It was a gift of one day that could reinforce all my intentions to stay the course or lure me into a false sense of full wellness.

Several times I was suckered in by the gift. But after a few bad turns I got it. By comparison it put so much in perspective. So this is what it feels like to be better and feeling strong! So just as I know that the 60 degree day is only a reminder of the spring to come, back then I had to avoid the pitfall of a wonderful gift of a better ME/CFS day. Revel in its potential to be repeated more often and stay the course of pacing.

How have you reacted to these gifted days? 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 Attitude – What Others Say

4/17/2018

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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 Recovery – A Mine Field of Variables

4/10/2018

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If everyone who was suffering with ME/CFS were to write down all of the variables that affect them, it would be a long list. Life in general challenges us but add to that all of the knowns and unknowns of ME/CFS and it can be overwhelming. During the time when I was bedridden with ME/CFS, I must admit that for a good number of my waking hours each day, I cranked over that list. I allowed it to feed on the precious little energy that I had and erode my will to get well.

It was when I finally jettisoned the list and began to focus on one or two variables at a time that my health started to improve. Instead of wandering through the entire mine field where it was certain that one of them would blow up, I carved out smaller areas with a limited scope. Usually this would include a shorter timeframe to focus on and only a couple of life’s issues to act on. It didn’t always work but most of the time, it allowed me to intentionally focus the energy I had on things that were realistically within my reach.

How do you keep yourself within a realistic window? What strategies have worked 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 weekly posting on Tuesdays. And consider being part of the conversation.

Be Well Again,
Martha

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ME/CFS Optimism – Brighter Days

4/3/2018

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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

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ME/CFS Stop – When we had other plans

3/27/2018

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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 a weekly posting on Tuesdays. And consider being part of the conversation.

Be Well Again,
Martha

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ME/CFS Invisibility – You Are Not Crazy

3/20/2018

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I was standing at a deli counter waiting to order and there were no numbers to take. So I tried to politely keep track of whose turn it was to be served. Predictably, a few of the people just didn’t want to see me. And of course, it reminded me of how invisible I was when I was struggling with ME/CFS.

Most of us have suffered not only with the frustration and illness of ME/CFS but with the non recognition of this disease by the medical community and the people around us. According to them, we don't look that sick and we don't test sick so we aren't physically sick... And when we’re treated that way, we tend to withdraw. Combine that with the physical and mental disability of ME/CFS and it’s a combination that leaves us isolated and ultimately invisible.

And in that isolation, we begin to question our own mental capacity. Do not listen to those negative, degrading messages! You are not alone in this and you are not crazy! Many people are in this ME/CFS boat struggling to be seen and to be well again.

For me, I was able to find a few people who would listen and help. It made me feel visible again. How do you deal with the invisibility of ME/CFS? 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 Sadness – Snowy Days Made Me Happy

3/13/2018

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It’s a cold snowy day in New England. It's the third storm in a conga line. So today, as I settled in for a less active indoor day, I started thinking about my struggle with ME/CFS and those snowy days. One might think that like some people, snowy days would have seemed dreary and sad back then. But the opposite was true. Snowy days made me very happy.

Why? When I was struggling with ME/CFS, sunny warm days made me miserable. I wanted so much to be out and going about my life. And lovely days were a tough reminder that I was too ill to participate in my own life – in anyone’s life. Those days seemed twice as long as normal. They dragged and dragged and dragged on some more. Those days were depressing.

I must admit, somewhat ashamed, that cold snowy days made me feel like other people might have their days limited as mine were. Not with the physical symptoms of ME/CFS but the limitations on mobility. The restriction of activity and possibly some of the isolation. I felt like other people were stuck in it with me. A sort of warped sense of misery loves company. And this made me happy. OK, not one of my best moments.

As I began to understand that I needed to get off the ME/CFS roller coaster and focus on a real recovery plan, this weather influenced attitude began to change. My daily approach to healing became a matter of choice as I was no longer a victim of ME/CFS but rather someone who was on an intentional recovery path. Nowadays when I’m trapped indoors on cold snowy days, I like to make the best of it and imagine I have lots of company. And a nap is nice too. How do you relate to cold snowy days? 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 Recovery – Take Control

2/27/2018

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Have you had the experience of being introduced to a new perspective or way of looking at something and then suddenly you see it everywhere? Is it something new that’s popping up everywhere or had it been there all the time? Is it you who has changed by being aware or more open? From my own experience, I think it’s me. And when I truly grasp a new perspective, it seems to apply to everything.

My latest perspective is about control versus out of control. So much of our lives are controlled from somewhere else. But there is much that we can control. Not everything and not all of a certain thing, but there is much that we can tweak, reinforce and push for. Lately I’ve heard many people express to me and wring their hands about how things are happening in their lives. And they take the perspective that they are at the mercy of whatever it is. And as I hear this, my mind is saying take control. Make some intentional changes and be proactive. And of course it’s gotten me thinking about my struggle with ME/CFS.

At first, I turned over control of my illness to my doctors. But after much wasted time and energy, I finally admitted to myself that not only did they not have the answers, they ultimately just didn’t get it. A few were compassionate but that just felt good. It didn’t get me well. Finally I started to carve out pieces that I could control. I was sick of being sick and I was sick of getting nowhere. So, even though I wasn’t convinced that I really could change my SEID/CFS illness, I was so ticked off about having no answers to this cruel disease that I just started recording and tweaking. Recording and tweaking. Recording and tweaking ad nauseum.

So I just took action. I didn’t know what I was doing. But I was doing and it felt good. Would I get anywhere? I didn’t know but it felt better exerting some control. Eventually it became my path back to wellness but I didn’t know that when I started. I just needed to take some control. And it was good for my mental health. Are you taking some control of your version of ME/CFS? 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 on Tuesday, March 13th. And consider being part of the conversation.
Be Well Again,
Martha

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ME/CFS Doctors – Working Relationships

2/20/2018

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Finding a doctor or provider who understands ME/CFS can be a challenge. There is still a lot of misinformation and lack of understanding about ME/CFS in the medical profession. And unfortunately, some providers still believe that ME/CFS is not a physical illness. That said, there are some providers out there who DO understand ME/CFS and most importantly, there are many provides out there who know how to work with a patient no matter what the diagnosis.

This puts the burden on us, the patient, to create a working relationship with our providers. How? Step into the role of the provider. They have trained for years to make educated medical assessments based on data collected from medical/family histories, physical examinations, tests and symptoms as described by the patient. Two of these sources rely on the patients memory and capacity to translate how they are feeling into terminology that means something to the provider. For ME/CFS patients, this is a challenge. We inherently are struggling with compromised memories and frequently fail to keep a conversational context for any extended period of time. Add that to the often rushed environment of a doctors office where the face to face time with the physician is limited and mostly directed by the doctor who is asking a lot of questions. Lastly, we have a diagnosis that is non-specific. Each patients version of ME/CFS can be vastly different in presentation other than the standard definitional symptoms. So as patients, we need to be proactive with data. We need to go into the doctors office with an accurate picture of how we have been since our last appointment described in data terms that a doctor can relate to.

A daily health log is key to ensuring a reliable picture of how you are doing. It provides your physician with data driven input. It accurately represents your symptoms and their severity which give your provider specifics on which to focus. Most importantly, it gives you confidence in knowing how you are progressing in real terms that don’t rely on your compromised recollections. Are you keeping a daily log? Do you have a working relationship with your doctor? 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 Solitary Struggles – Asking For Help

2/13/2018

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Recently I was trying to juggle several things that really required two pairs of hands. Of course I wrestled with it for a while before I admitted that I needed help. And it reminded me of all the time I spent struggling with ME/CFS in solitude. Some of it was pride – the type A ‘I can do it all’ scenario. Some of it was reluctance – not knowing if I would get a supportive response. And some of it was not wanting to share all the painful, frustrating details of ME/CFS. We tend to be private people and revealing ourselves can make us feel vulnerable and exposed.

For me, I finally had to admit that I needed help as I struggled with ME/CFS. And that required not only a willing and compassionate helper, but it also required that I get off my ‘I can do it’ pedestal and be willing to reveal a Martha who was not in control and on top of things. I needed to be ready to show weakness and not be ashamed or feel belittled. It’s a huge step for some of us.

But I couldn’t avoid the reality that I needed help. So I had to accept the need to reveal myself – and all my blemishes – and get up my courage to ask for help. It resulted in some half hearted maybes which never materialized, several uncomfortable nos, and blessedly a few compassionate yeses. And that was all I needed.

Do you have trouble asking for help? How do you set aside your pride and privacy in order to get help? 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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<<Previous

ME/CFS Gifts – Better Days

ME/CFS Attitude – What Others Say

ME/CFS Recovery – A Mine Field of Variables

ME/CFS Optimism – Brighter Days

ME/CFS Stop – When we had other plans

ME/CFS Invisibility – You Are Not Crazy

ME/CFS Sadness – Snowy Days Made Me Happy

ME/CFS Recovery – Take Control

ME/CFS Doctors – Working Relationships

ME/CFS Solitary Struggles – Asking For Help

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