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

ME/CFS Lost Opportunities? – Just Postponed

8/11/2020

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

ME/CFS Emotions - Droughts and Deluges

6/30/2020

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

ME/CFS Hope – Paired with a Wellness Plan

5/19/2020

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

ME/CFS Optimism – Brighter Days

4/7/2020

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

ME/CFS Attitude – Highs and Lows

2/4/2020

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

11/26/2019

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 Attitude – The Law of Attraction

6/18/2019

I was feeling down recently - kind of an internal implosion resulting from too many people and things weighing on me culminating with feeling sorry for myself. For a period of time I allowed myself to be in that place. And that was OK because sometimes we need to feel emotions in order to decide what to do about them. And it gave me a small taste of my lowest points when I was struggling with ME/CFS.

I am however, at my innermost core, an optimist and that part of me eventually asserted itself and demanded that I move on. I was reminded of the Law of Attraction and the theory that by focusing on either positive or negative thoughts, we attract the same energy or results. The most documented example of this is the placebo effect which produces positive health results in blind medical trials where the patient is only given a simple sugar pill. Patients are able to think themselves better. I was not aware that there is an equally well documented nocebo effect which produces negative health results in clinical trials where a placebo is used. People who fear medication or who have a negative medical image can actually cause deterioration in their own health. Powerful stuff.

For me that’s a strong statement about how much control we actually DO have in dealing with ME/CFS. Once I turned the corner away from blame, denial and anger, and moved forward into solving my ME/CFS puzzle as a case study of one, I began to slowly get better. And yes, I was actively managing my health every day and it was no accident that the daily scrutiny finally resulted in my return to health. But my positive attitude directed at my determination to figure out my version of this cruel disease, was a big factor in succeeding despite the long haul. How do you manage your daily attitude in order to attract positive healing? 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 weekly posting on Tuesdays. And consider being part of the conversation.

Be Well Again,
Martha

ME/CFS Optimism – Brighter Days

3/19/2019

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 my next posting on Tuesday April 9th. And consider being part of the conversation.

Be Well Again,
Martha

ME/CFS Mantra – Pace, Pace, Pace

3/5/2019

We had a light snowfall this week so I went out to shovel the sidewalk. It was only a couple inches of fluffy white so the going was easy. As I scooped up and tossed each airy load, I began to get a rhythm going. And of course I started to think about ME/CFS – my daily thankfulness for my return to full health is never far from the front burner. I had developed two mantras during my struggle back from ME/CFS. The first was Attitude, Attitude, Attitude. It took me a long time to finally cut myself some slack about being sick and then about feeling like I was letting my family and loved ones down. Not to mention dumping my anger at the medical community.

Once I started to accept the reality of my illness and my personal challenges, my mantra switched to what I could actually DO about my situation. That’s when I took up my second mantra. So as I tossed aside the snow, I began to softly, slowly chant, “Pace… Pace… Pace…” Being attentive to my daily routines, my choices for energy expenditure and reluctantly pulling back on my own reins whether I liked it or not, were key to pacing myself back to health. Yes - Of course I screwed up sometimes and wanted to kick myself but mostly I was firm in my commitment. And I did my best to communicate that to others around me.

How are you doing with pacing? What challenges you the most? 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 Emotional Baggage – Dump It

1/15/2019

I’ve been helping someone clear out a family home which is full of memories – a mixture of good and bad. But mostly the house is weighed down with so much emotion that it feels like the structure itself sags under the burden. Of course, I started to think about my struggle with ME/CFS and the crushing assortment of emotions that I wrestled with.

In the beginning, I was consumed with frustration that I had no answers and anger that I was so quickly dismissed as ‘just depressed’. Then as I fell into the ME/CFS trap of push/crash cycles I developed self-blame. And as the months then years dragged on with no improvement, I felt guilty about the drain I had become on my family and the lost time that I had stolen from them and from me. Then I added in a good dose of shame. Eventually I had created a toxic soup of emotions which I was drowning in.

Pile all the worry on top of that and I was definitely going under. Talk about emotional baggage! Could I have been any better at bringing myself down? A surgeon couldn’t have succeeded in removing my self-esteem and self-image more precisely. And what about all the energy I drained from my limited reserves just festering over this mountain of emotional baggage?

After I spent a couple of years letting these emotions keep me under, I finally came to the understanding that I was only making my struggle with ME/CFS even harder. It took a great deal of determination to dump the emotional baggage. But once I started to off load, it felt great. I became intentional about my emotions and I packed lightly. How are you dealing with your emotional baggage? 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