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

ME/CFS Treatment – Working with a Provider

6/12/2018

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

2 Comments

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

Immune Support – Who Do We Listen To?

5/29/2018

2 Comments

Most ME/CFS patients would agree that supporting our immune system is key to a successful path back to health. We recognize that this system is a 24/7 work horse that never rests. The majority of challenges to our person health that we encounter go undetected by us due to the vigilance and vigor of our efficient immune systems. And some researchers support the theory that part of the ME/CFS struggle is due to a compromised or ‘on tilt’ immune system.

So what should ME/CFS patients do to support our immune systems? From my perspective, it’s hard to find definitive information unless it’s followed by an ad for the recommended product. At one extreme are the recognized research groups who won’t commit to anything specific. At the other extreme are the passionate semi-scientific articles extolling the virtues of a ‘total solution’ product. ME/CFS patients find it difficult to sift thru all of this when so much is at stake and brain fog is dulling one’s judgments.

Here's a link to an article from Harvard Law School “How to Boost Your Immune System.” It’s couched but ultimately informative. And it gets us into the supplement discussion again.

For me, eating healthy food loaded with nutrients and getting REM sleep were the highest priority in my efforts to support my immune system as I was working to defeat CFS. What are your strategies? Have you found a combination of things that add up to a healthier immune system? 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 Recovery – Trust the Process

5/22/2018

0 Comments

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

0 Comments

ME/CFS Irony – Mind Over Matter

5/15/2018

0 Comments

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

0 Comments

ME/CFS Sleep Deprivation – Switch to Rejuvenating REM

5/8/2018

0 Comments

Everyone experiences periods of lousy sleep. It can be due to illness, disrupted schedules, emotional distress, worry, etc. Eventually, if it goes on for too long, we start to feel sleep deprived. If you’re struggling with ME/CFS, this can become status quo layered on an illness that already robs you of desperately needed deep sleep. For ME/CFS patients, it’s imperative to create optimum opportunity for restful and rejuvenating sleep.

First, be sure that your sleeping environment is perfect for you. Mattress, pillows and covers should be just right – Goldilocks style. The degree of darkness vs. light and silence vs. sound need to suit you. Do you share the bed with a partner or a pet? Ensure that you have plenty of space and that no one disturbs you.

Second, you need to have a sleeping schedule that is adhered to religiously - no exceptions. Plan your evenings and days around bed and naptimes. Everything else should be secondary. This sounds like it could be impossible but if you plan around it, it’s doable. And it pays off.

Lastly, once you have a good environment and a regular schedule, all you need is to get to REM. For me, this was elusive while I was struggling with ME/CFS until I worked with my doctor to select the right medications for me. Pain was the main reason that I woke up frequently during the night so I took a combination pain reliever and muscle relaxant half an hour before bedtime. Then we added a non-addictive sleep aid. After a few weeks, I was starting to see some improvement. After a few months, I could begin to feel the difference. I was finally beginning to get some solid REM sleep for the first time in more than a year.

So how is your sleeping environment? Do you keep religiously to a bedtime and rest schedule? Do your sleep aids work for you? How would you rate your quality/quantity of REM sleep? 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

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.
*********************************
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.

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

2 Comments

ME/CFS Gifts – Better Days

4/24/2018

3 Comments

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

3 Comments

ME/CFS Attitude – What Others Say

4/17/2018

0 Comments

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

0 Comments

ME/CFS Recovery – A Mine Field of Variables

4/10/2018

2 Comments

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

2 Comments

<<Previous

ME/CFS Treatment – Working with a Provider

ME/CFS Pacing – We Totally Get It

Immune Support – Who Do We Listen To?

ME/CFS Recovery – Trust the Process

ME/CFS Irony – Mind Over Matter

ME/CFS Sleep Deprivation – Switch to Rejuvenating REM

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

ME/CFS Gifts – Better Days

ME/CFS Attitude – What Others Say

ME/CFS Recovery – A Mine Field of Variables

Join Our Community
Enter your email address to
follow this blog.

For Books, Supplements, Sleep aids and more

Archives

Categories

Join Our CommunityEnter your email address tofollow this blog.

Archives

Categories

Join Our Community
Enter your email address to
follow this blog.