Category: Strategies

ME/CFS Feeling Empty – Sleep Deprivation

10/30/2018

I haven’t been sleeping well lately. There’s a lot going on and I’m caught up in too much brain activity. After several restless nights, of course I began to think about ME/CFS.

I remember when the exhaustion was so pervasive. I had a mental flashback to the lowest days of my ME/CFS years when even holding a glass of water was beyond my strength and the brain fog was so thick that I couldn’t remember my thoughts for more then a moment or two. It was long days of running on total empty.

It wasn’t until I understood the role that sleep deprivation was playing in my struggle with ME/CFS that I began to improve. We dissected everything about my nights in order to improve my sleep – Comfort, light, sound, timing and medication. We tweaked and tweaked. When we finally got it right, I was getting about 6 hours of solid, uninterrupted sleep every night.

So yesterday I tweaked a few things in my current sleep environment and I finally slept for 7 hours last night. Even my active brain couldn’t keep my body from finally getting some needed rest. This morning I felt a little more energy and gratitude for the hard earned lessons of my past.

What’s the status of your sleep patterns and environment? What needs tweaking? 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 Gifts – Pace Yourself

10/16/2018

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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

4 Comments

ME/CFS Reality – Commit to Being A Patient

10/2/2018

2 Comments

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

2 Comments

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 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 Treatment – Working with a Provider

6/12/2018

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By the time most of us received our ME/CFS diagnosis, we had seen several practitioners hoping to find answers as to why we couldn’t regain our strength and energy. Batteries of tests later, we still had no answers. So, we were labeled with ME/CFS/Fibro or whatever it’s called in your region. For most of us, this pronouncement was accompanied by a complete lack of a treatment plan.

We are struggling with a chronic condition whose symptoms include pain, complete fatigue, brain fog and the inability to get restful sleep. From this place of low functioning, if at all, we have no answers and no solid treatment plan. And I don’t consider ‘rest and you’ll feel better’ a treatment plan.

What to do? I flailed around for quite awhile before I started keeping a daily record. But once I started, I began to have specifics that I could document and discuss with my provider. Instead of looking for him/her to provide me with answers to my illness, I provided solid data about my patterns and symptoms. Full disclosure, he never seemed to care much about my energy patterns. But he liked seeing symptoms that he could directly treat. And he loved getting feedback via follow up data to determine if the treatment had any effect. So, I learned to work with him as a partner. It was a completely different relationship than I was used to but it worked for ME/CFS.

Do you have a provider that you’re working with? How do you successfully partner with him/her? 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 Pacing – We Totally Get It

6/5/2018

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No matter where you live, you may be aware that New England has been dealing with a conga line of cold, rainy weekends since April. It has been a record breaking couple of months. Even the most ‘rain loving’ people around me have had it. And of course, all of this got me thinking about my struggle with ME/CFS.

Like many, the depths of my illness dragged on for about four years. And like many more, it still drags on. We know what it takes to be in something for the long haul. To commit to getting better as a lifestyle however limited. And yes, some of us needed multiple remedial roller coaster rides of push crash cycles – I’m at the front of that line. But we totally get the patience and pacing it takes to reach a goal – for us wellness. And we keep at it, day after day, week after week, month after month and year after year. We are determined to be well again.

This understanding doesn’t entitle me to look down my nose at those around me who are done with the cold and the rain. But honestly, I do a little – just a smidge. Yes, I’m tired of it too but I am not complaining. This is a piece of cake – made of rain - compared to struggling with ME/CFS.

Whenever someone groans about the weather, I listen for a while then smile and say, “Keep Calm and Umbrellas Up”. 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 Irony – Mind Over Matter

5/15/2018

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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 ME/CFS takes up residence. I don’t think that it’s a coincidence that some ME/CFS sufferers would label themselves as Type A personalities prior to ME/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 ME/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 ME/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

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ME/CFS Guest Blog – Dale Miller’s list of Health Ideas

5/1/2018

2 Comments

Dale Miller recently sent me his list and I wanted to share it. It’s long so I’ve selected twenty to start. Pace yourself LOL.
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I have been reading your blog for at least a couple of years. You always have a good thought in there that is valuable in helping me run my life. I’ve been dealing with these issues for over 15 years. At different times, I have been in the pit of despair at ever being able to do anything, and at other times, ringing with ecstatic joy at being reborn into a full rich exciting life. It has taken me a long time, but most days, I have learned to savor each day or hour that I am able to function and show up for my life.

Overtime, for me, I have learned that maintaining optimum health is a long haul operation. My view is that watching out for and caring for my body just came at an earlier time in my life than it does for most people. Everyone, if they want to operate at their peak has to be careful to eat the right foods, watch over their mental processes. get the right health care, proper rest, good companions, love and care. We all need/want these things, not just people with a chronic health condition.

Take care, Dale

HEALTH IDEAS
April 19, 2018

Positive/negative affirmations. Whenever you say, “I’m tired. I’m old.” These are negative affirmations. You may not believe in affirmations, nevertheless you may be doing negative affirmations every day!
Develop a tiny interest, something to think about every day.
Keep the mind off sickness, push the mind over to the interest.
Audible books for distraction. Try happy tv or radio.
Music always playing in the house.
Dance it out.
Sing, doesn’t matter if you have a lousy voice, raises the endorphins.
Find someone or animal to touch.
Small exercise daily, even if only visualizing.
Starfish 10x a day. A starfish is when you raise your arms as high as possible over your head, inhale deeply, then bring your arms down and exhale.
Understand completely the connection between illness and depression. If you are long-term ill, you are probably depressed. Suggest Jonathan Harr’s book, Missed Connections for what to do about it.
Constantly be looking for something to feel good about. Roses, flowers, puppies, kittens, dogs.
Find all the parts of your body which are working. Chances are, 97%+ is working, notice that and catalogue if you need to. Focus on what part of the body is working and functioning, not on what is not.
Slow down, taste everything, smell everything, hear everything.
Correct your posture constantly. A slump posture makes you feel bad and breathe shallowly.
Negativity bias. This is a bias that all humans have which is a survival skill. It’s very valuable if there is a saber tiger in your immediate vicinity. Otherwise, you are trained to always seek the negative. This is not helpful if you are trying to recover from a chronic illness.
Control your input, you may have to lose negative friends and family.
Forgive everyone who has ever wronged you in this life-including yourself.
Read inspiring material every day.
Find someone or something to love unconditionally, hopefully yourself.

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Look for a weekly posting on Tuesdays. And consider being part of the conversation.
Be Well Again,
Martha

2 Comments

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

0 Comments

<<Previous

ME/CFS Feeling Empty – Sleep Deprivation

ME/CFS Gifts – Pace Yourself

ME/CFS Reality – Commit to Being A Patient

ME/CFS Change – New Beginnings

ME/CFS Brain Fog – Write it Down

ME/CFS Treatment – Working with a Provider

ME/CFS Pacing – We Totally Get It

ME/CFS Irony – Mind Over Matter

ME/CFS Guest Blog – Dale Miller’s list of Health Ideas

ME/CFS Stop – When we had other plans

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