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

ME/CFS Attitude – Stilling the Voices

7/3/2018

Everyday ME/CFS sufferers deal with choices: The ‘energy envelope’ as it’s referred to nowadays. The emphasis is placed on how much energy you have, what you MUST handle today and what you can postpone or just let go of altogether. This approach refers almost exclusively to physical energy expenditure.

When I was sick, physical energy conservation was a primary concern for me. But I came to realize over time that emotional and psychological energy were even more important. Doesn’t make sense? Here’s how it would go for me.

During the times when I was ‘resting’ and making well balanced decisions about my physical energy, my mind was still active. Almost racing along despite the brain fog, I kept sifting through things like a Virginia Woolf stream of consciousness passage on speed. And despite my best efforts to be upbeat and positive about my situation and progress to date, I would eventually wander down the self questioning and negative path of doubt. And then would come the damaging and harsh list of everything that I was failing at because of ME/CFS.

For me, this was exhausting. And debilitating. So over time I learned to still my mind. Beating myself up mentally wasn’t changing anything except eating up precious energy that I needed for the long haul.

So after you fend off the insensitive comments of others, how do you look upon yourself? Do you fester over your situation? How do you still the negative voices? 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 Recovery – Trust the Process

5/22/2018

People use the word trust a lot. I’m not sure if they really understand its meaning. I recently had some sparks fly between me and someone I was working with on a project who is also a good friend. We were both surprised by the sudden eruption but I told her it was OK because I trusted her. I know her good intentions and the stress she’s feeling because her name is on the project. And it reminded me of my struggle with ME/CFS when I was riding the daily roller coaster despite my efforts to follow the protocol.

On days when I was on schedule and feeling like I was managing my energy, getting rest and doing ‘the right things’, it was easier. On days when I felt lousy and nothing seemed to be going according to plan, it was horrible. Those bad days could do me in if I allowed myself to stay in that frustrated, down place. I finally came to understand that I had to trust the process of recovery. It’s easy to trust the process when you’re having a ‘good’ day. The real test of trust comes when you’re having an ‘awful’ day.

So, on those awful days, I had to steer my frustration and depression back into trusting the process. Of course, you have to have a process to place your trust in. My process was my protocol with the daily record as the anchor. It served not only as the grounded center of my work to solve my version of ME/CFS but it was an anchor for my sanity.

We all know too well how much fodder ME/CFS serves up for self bashing and depression and just ‘giving up’. The process was my way of turning that negative energy into positive action to get well. I placed my trust in that process even on the ‘bad’ days. Do you have a process you can trust? 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 Recovery – A Mine Field of Variables

4/10/2018

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

ME/CFS/SEID Colored Glasses

7/18/2017

When you are struggling with ME/CFS/SEID, it’s hard to see anything else. ME/CFS/SEID controls your energy, your schedule, your choices, your physical comfort, your day, your night and your outlook. Everything you consider can be interpreted through your ME/CFS/SEID colored glasses with a dose of brain fog.

For someone with ME/CFS/SEID, it’s a necessity. It’s a survival mechanism. It’s reality. And fighting this reality is fruitless. Just more squandered energy and risked relapses.

Remembering that we have restrictions eventually becomes second nature. And as much as it totally stinks, it can develop into the way forward. Acceptance of this second nature or inner ME/CFS/SEID voice can bring rewards. Better choices. Better days. Beginning to experience better weeks.

For me personally, it took several knock down relapses before I understood this dreaded voice. Some days I wanted to throttle it. The message was one that I didn’t want to hear. But slowly, eventually, I began to listen. Do you listen to the cautionary messages of your inner voice? Are you learning to pace yourself better and avoid severe relapses? 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 Apprehension – Letting It Go

3/14/2017

It’s been a challenging couple of weeks for me. Things are settled for now but I know that the future will at some point entail more of the same kind of challenges. And I feel a kind of apprehension about it. Of course it’s reminded me of the feelings that used to affect me when I was struggling with ME/CFS/SEID.

I had tried mightily to not let feelings of anxiety or fear of more bad days get to me. My cognitive brain accepted that I would have to deal with them as I slowly recovered but my emotions and psyche were uneasy – waiting for the signs and body pain that would be the harbinger of a bad day. Sometimes I would allow this anxiety to effect my day even if it was by comparison a reasonable day. It took a great deal of intentional focus to see the positive side of how I was physically feeling. And to ignore the anxious voice inside of me.

The strategy that finally worked for me was planning ahead. During the time I was bedridden, I would plan by the hour. What should I be doing during the next few hours to achieve a good outcome? As I got healthier, I planned by the day. What should my day look like in order to stick to the protocol and have a successful day? Eventually, I was looking at a week and planning a well paced reasonable series of days that generated a positive result. It seems simple but it worked.

How do you let go of the apprehension? 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 Perspective - The Inner Voice

2/28/2017

When you are struggling with ME/CFS/SEID, it’s hard to see anything else. ME/CFS/SEID controls your energy, your schedule, your choices, your physical comfort, your day, your night and your outlook. Everything you consider is interpreted through your ME/CFS/SEID colored glasses with a dose of brain fog.

It’s a necessity. It’s a survival mechanism. It’s reality. And fighting this reality is fruitless. Just more squandered energy and risked relapses.

Remembering that we have restrictions eventually becomes second nature. And as much as it totally stinks, it can develop into the way forward. Acceptance of this second nature or inner ME/CFS/SEID voice can bring rewards. Better choices. Better days. Beginning to experience better weeks.

For me personally, it took several knock down relapses before I understood this dreaded voice. Some days I wanted to throttle it. The message was one that I didn’t want to hear. But slowly, eventually, I began to listen. Do you listen to the cautionary messages of your inner voice? Are you learning to pace yourself better? 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 Emotional Baggage – Dump It

9/27/2016

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/SEID 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/SEID 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

ME/CFS/SEID Stress – Letting Things Go

5/17/2016

Lately, the amount of stress in my life has been on the rise. It’s primarily a function of too many people and needs pressing for my time and energy as we’re in the midst of multiple life passages. But my situation now is always put into perspective when I think about the level of stress I felt when I was struggling with ME/CFS/SEID. By comparison, today’s stress is a stroll on the beach.

My understanding of all the variables that were affecting me during my illness is clearer now that I have my mental focus back along with the long view. One piece that I get now is how much stress I was under in addition to the underlying physical illness that knocked me down (for more info on my version of ME/CFS/SEID, check under Further Lessons on the website menu bar). We know that a physically healthy person can be undone by stress. It takes a heavy toll on our biological and nervous systems. When those systems are already ‘on tilt’ and not able to cope with ordinary daily demands as they are with ME/CFS/SEID, a heavy load of stress can keep you from recovery. For me, the ME/CFS/SEID stress came from every direction – some self inflicted and some imposed by others needs and judgments. It was like a knock out punch when you’re already on your knees.

The only way I was able to recover was to let all the stress go. And to let go of all the stressful things that accompanied it. Of course, I didn’t do this right away. That would have been too easy. Instead I struggled and tried to handle everything for a few rocky, push/crash years before I finally understood how damaging all the stress was in addition to my physical version of ME/CFS/SEID.

So today, I make use of my hard won ME/CFS/SEID knowledge about stress when I deal with stressors as a healthy person. I do what I CAN do to move my life along and I allow myself some serious slack about all the rest of it – I let things go. How do you deal with the stress as you struggle with ME/CFS/SEID? 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

SEID/CFS Instincts – Don’t be Fooled

3/29/2016

Instincts are frequently cited as the reason for our survival. And I completely agree that we should follow our instincts as they are right. I think we have an ancient ‘knowing’ that is programmed into our DNA from millennia of learned successes and failures. Anthropologists have documented many of them. And for me, I think we also have this ‘knowing’ at a cellular level. Cravings come to mind. And our bodies demand for rest. But sometimes, as I unfortunately discovered when I was first struggling with SEID/CFS, our instincts can fool us.

Prior to my struggle with SEID/CFS, I was a type A on steroids. It was instinctual with me to solve problems by throwing myself into them with everything I had. I didn’t learn this from those around me. Somehow, I was programmed that way. And with every success, it only reinforced the method. So as I first struggled with SEID/CFS, my immediate instinct was to push through it. And as you all know from your own experiences, this approach completely failed me. While my body was desperately calling for rest, my brain pumped out something that enabled me to push the pace. I reminds me of the impossibly heavy objects that people are able to lift in emergencies. And of course, it was unsustainable. My body finally crashed hard and my brain was forced to relent. Unfortunately this happened more times than I’d like to admit.

So yes, listen to your body’s instincts: Exhaustion, cravings, pain, confusion, etc. and heed the messages. My one caveat is to be careful to filter the messages through the logical part of your brain and ignore the frantic, desperate voice. Even a healthy person can’t lift a car every day. What are your instincts telling you? What messages do you heed in order to recover from SEID/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

SEID/CFS Perspective and the Inner Voice

11/17/2015

When you are struggling with SEID/CFS, it’s hard to see anything else. SEID/CFS controls your energy, your schedule, your choices, your physical comfort, your day, your night and your outlook. Everything you consider can be interpreted through your SEID/CFS colored glasses with a dose of brain fog.

For someone with SEID/CFS, it’s a necessity. It’s a survival mechanism. It’s reality. And fighting this reality is fruitless. Just more squandered energy and risked relapses.

Remembering that we have restrictions eventually becomes second nature. And as much as it totally stinks, it can develop into the way forward. Acceptance of this second nature or inner SEID/CFS voice can bring rewards. Better choices. Better days. Beginning to experience better weeks.

For me personally, it took several knock down relapses before I understood this dreaded voice. Some days I wanted to throttle it. The message was one that I didn’t want to hear. But slowly, eventually, I began to listen. Do you listen to the cautionary messages of your inner voice? Are you learning to pace yourself better and avoid severe relapses? 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