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

ME/CFS Gifts – Pace Yourself

10/16/2018

I’ve been thinking a lot about pacing - for myself, for my family, for the seemingly swirling world around me. Are we goal driven or just driven? Are we actually going anywhere? Do we arrive? Are we missing the whole point of the journey itself by never slowing down? When I was struggling with ME/CFS, I was forced to slow down. For a time, I was forced to completely stop.

It wasn’t until I began to recover, slowly but surely, that I also began to understand the ‘gift’ of being forced to slow down. Not that I recommend ME/CFS as a good path to gaining perspective on pacing your life but it was how I got the message. Making choices and pacing have become part of my new way of being. I do smell the roses now.

If you worry about what you’re missing as you struggle with ME/CFS, this quote will make you smile.

"Slow down and everything you are chasing will come around and catch you.” John De Paola

It reminds me of a Saturday morning cartoon where a dog is chasing a cat around in a circle. The cat steps off to the side and just watches the dog who continues to run around the circle. I can remember the road runner doing this to wile e coyote too.

Although ME/CFS is not the preferred method for receiving the ‘gift’ of pacing, it is the way we’ve received it. Open it up and appreciate the message. How are you pacing? 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

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ME/CFS Reality – Commit to Being A Patient

10/2/2018

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I recently received an e-mail from a someone 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? 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 Change – New Beginnings

9/4/2018

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Although the official beginning of Fall will arrive on the Autumnal Equinox, the days after the long Labor Day weekend and the sighting of a morning school bus bring on the feel of the changing season. Although some of us would enjoy an extra week or two of August weather, it’s time. And nature reinforces that with the cooler nights and comfortable daytime temps. When I was first sick with ME/CFS, I would grind on myself about another season come and gone – wasted – while I languished in bed. I was still caught up in the desperate search to find someone who could cure me.

Then I finally began to realize that there wasn’t a silver bullet – even now, I’m sad that there isn’t – and that I needed a new approach. A change - A new beginning. I had been doing the same things over and over again and expecting a different outcome – as we all know, that’s the definition of insanity. And yes, anyone would get a little insane if they knew they were physically ill but no one could or would provide some answers.

Many of us find change to be outside of our comfort zones. But change is the way forward for many of life’s challenges. ME/CFS is no exception. It wasn’t until I took a hard look at myself and my specific version of ME/CFS that I began to heal and work my way back to full health. Soap box – Are you keeping a daily journal?

What change will you bring to your approach to 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!

I will be off the grid for the next several weeks. I’m looking forward to the time I’ll be spending away from the distractions of technology however much I love its’ gift of connectedness. Look for my next posting on Tuesday, October 2nd and consider being part of the conversation.

Be Well Again,
Martha

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ME/CFS Lost Opportunities? – Just Postponed

8/28/2018

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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

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ME/CFS Brain Fog – Write it Down

8/21/2018

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One morning recently, I woke up to thick fog blanketing the yard. It was so dense that it reminded me of a night last spring when I was driving home and the lingering snow on the ground was a few inches thick. With temperatures in the mid 30s, there was a wall of thick fog hanging over the snow and drifting across the roads. In high school science class I learned that sublimation is the transformation of physical matter directly from a solid to a gas without ever becoming a liquid. So the night fog was the result of the frozen snow skipping over water and going straight to cloud vapor. And it reminded me of the frustrating brain fog I had when I was struggling with ME/CFS.

Kind of like the snow, my brain seemed to skip over the natural fluidity of conversations - the ebb and flow of ideas exchanged with another. Or the transitional thoughts needed to get from a concern to a possible course of action. Concrete thoughts wouldn’t develop and instead slowly leaked out of my head like a balloon with a pin hole. I couldn’t remember what someone said a moment after they said it. It seemed to dissipate into the air without ever registering in my brain.

After denying the reality of my memory struggles for awhile, I finally came around and tried to cope with it. I started to write things down as I spoke with people and it helped me to keep the train of thought going. And when I was trying to think through something on my own, I also wrote it down. It felt stupid at first, but when it began it help, I appreciated the sense of accomplishment that resulted.

How are you coping with brain fog? What strategies have you developed? 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 Energy – Intermittent

8/7/2018

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An intense sequence of squall lines loaded with lightning and thunder recently swept through our area and I hope that all in its path were safe and able to ride out the storm. We now have our power back for good. During the height of the storm we lost and regained our power intermittently for about 5 hours. And it created uncertainly that kept resolving and then degrading over and over. It reminded me of how my energy waffled during my early struggle with ME/CFS.

Some days I couldn’t walk across the room without pain and exhaustion. Then, miraculously, the next day I could walk down stairs and even wash dishes feeling energized and ‘normal’. Of course, the next day, I struggled just to find the energy to sit up and eat. Then I would feel decent for two days. Then a crash. The negative cycle repeated over and over. It was beyond frustrating, it was infuriating. And I felt helpless and victimized. No one had any answers.

The intermittent energy felt by every patient who struggles with ME/CFS makes it a cruel disease. When I finally started taking control of my energy expenditures, I began the path to recovery. How do you keep your energy levels consistent? 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

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ME/CFS Support Network - You have to Reach Out

7/24/2018

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Recently, the topic of isolation and ME/CFS has been raised frequently in emails I’ve received. So often when we’re in an unfamiliar place, we tend to be isolated. If it’s geographically unfamiliar, we resist asking for directions and just muddle along without help. If it’s emotionally or psychologically unfamiliar, we don’t want to talk about it for fear of others judgment that we’re weak or crazy. And if it’s physically unfamiliar, we rely on a medical system that for the most part doesn’t have a clue what to do with us. For ME/CFS sufferers, that creates a triple play of isolation.

In order to break out of isolation, we need to reach out. Unfortunately, the nature of ME/CFS separates us from many of the daily networks that we used to depend on for connecting and support. Our workplace, neighborhood, community groups and social groups are diminished if not completely unavailable due to the isolation that ME/CFS can create. But despite our very limited energy levels, we need to reach out in order to create a support network. So how do we do that?

After I was fully well again, one of the important things I learned was that many of the people around me wanted to help but didn’t know how to – friends, family members, neighbors, community members. And even though I thought I had explained to them what was happening to me, many of them had no idea what I was actually going through. At the time, that seemed unbelievable to me. But I realized how true it was when so many people – including a family member whom I spent time with – told me after they read my book that they never understood my illness until now.

So for someone who is already dealing with ME/CFS each and every day, please understand that MOST of the people around you don’t know what you’re up against. And really, when you think about it, how could they? As ME/CFS sufferers, we struggle to understand the roller coaster cruelty of ME/CFS. It’s a nightmare!

OK, so you’re going to reach out. First, people need to know what’s happening to you. If you have a copy of my book, give it to the people close to you and ask them to read it. Or find other pieces written by ME/CFS sufferers and share them. This will be an eye opener for your family and friends. Then, come up with ways that people around you can help. Even the simplest things can make you and them feel 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

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ME/CFS Recovery Goal – Our Aim is Off

7/17/2018

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If you ask most people who are struggling with ME/CFS what they want, the answer is usually, “I want my life back!” What most aim for is normalcy. The ability to be the person they were before ME/CFS. They want their family life, social life, work life and healthy life back. They want to live again. They don’t want restrictions and pacing. They want the whole ME/CFS nightmare to go away. And I was no different. I searched and searched for the magic cure that would get me from nightmare to full health again.

During that search, I crashed and relapsed so many times that I really can’t number them. It was brutal physically, mentally and emotionally. Honestly, as my daughter would say, I was a hot mess. The truth that I finally discovered is that no one can go from the cruelty of ME/CFS to full recovery in one magic step. Not even two or three or ten. And since I’ve been fully well again and I’ve met others who have fully recovered, not one of them ever found an instant cure. If there was a key piece to their recovery, it was discovered as they recovered – as other symptoms began to receded, it became prominent.

So what’s your recovery goal? Are you ready to get off the crash and relapse roller coaster? For whatever reasons, some of us need to ride it longer than others. When you’ve had enough, reassess your goal and correct your aim. I finally realized that I needed to get to a pace where I could handle things and not get sicker. A pace plateau. Something I could sustain for weeks and not crash. Then I would try a little bit more. I if could handle it, I stuck with it for a long time to ensure that I didn’t get sick. And so on. If I couldn’t handle it, I quickly dropped back a step and settled in for a while. Did I like this snail’s pace? Of course not! I hated it! But I finally got my life back. So where is your aim these 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 Repetition – Keep Your Sanity

7/10/2018

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This summer in New England has seen a lot of hot weather. It hasn’t been two or three days in a row. It’s been a long conga line of hot dry days. Day after day and week after week. And it’s only the third week in July. I can’t remember the last time we had a good rain. I’m not an AC lover but it’s been on almost constantly. And inevitably when I get into drawn out repetitive situations, I think about my struggle with ME/CFS.

When I finally quit riding the roller coaster after two brutal years and settled into the protocol, it was a long, repetitive, frustrating path. Whenever I looked forward, the repetition seemed to spread out endlessly before me. Like this long hot summer, it didn’t seem like it would ever end. I had to find the courage to settle in. I needed to take it a day at a time. I needed to stick with the recovery plan and work it every day. Honestly, I couldn’t think about how slow the pace was because it drove me crazy. Much like this summer, I don’t think about how many more hot days are coming. I take it day by day. Right now, there’s another gorgeous sunny day outside my windows. The kind I hoped for in the dead of winter.

My best days of dealing with the slow repetitious pace were when I looked over my health log and saw the real progress. I was slowly making my way back to full health. And the proof was right there written in black and white. It was a balm for my sanity. Are you on the slow, repetitious path that the protocol requires? What helps you stay sane? 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 Attitude – Stilling the Voices

7/3/2018

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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

2 Comments

<<Previous

ME/CFS Gifts – Pace Yourself

ME/CFS Reality – Commit to Being A Patient

ME/CFS Change – New Beginnings

ME/CFS Lost Opportunities? – Just Postponed

ME/CFS Brain Fog – Write it Down

ME/CFS Energy – Intermittent

ME/CFS Support Network - You have to Reach Out

ME/CFS Recovery Goal – Our Aim is Off

ME/CFS Repetition – Keep Your Sanity

ME/CFS Attitude – Stilling the Voices

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