Blog Posts

ME/CFS Energy – Intermittent

8/7/2018

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

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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

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ME/CFS Guest Blog by Tim Boland - Codependency and Stress

6/26/2018

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Through the process of this illness, I have become more self protective.    I think it is telling that the statistics say that generally women are five times more likely to have CFS than men.   I was raised in a codependent family, where my mother’s needs were somehow always more pressing than my need to be a child, and for her to take care of my needs.     She was a good mother in terms of fixing meals, a tidy home and making sure I was well clothed and protected from the weather, which in Idaho is highly variable.

It was on the emotional side where I learned to displace my own needs, and due to some shaming I received as a small boy, I decided early on that I could not trust my mother with my feelings.   So I kept them to myself.   My father and mother’s relationship was dysfunctional and they ceased being intimate so there was little warmth there.    I learned early on to attempt to please others, to avoid conflict, and to ask how they were and became a caretaker in many ways.

Living in that way is stressful, and as the author of Codependent No More writes, we are the kind of people who are people pleasers.   But inwardly we are angry and resentful that our own needs are not being met nor are they being listened to, and doing things for others we would rather not do.

Women often are portrayed as being caregivers in the home and in their relationships, and this behavior happens with men too.   A key reason I became ill when I did was in giving in to demands of two people on two consecutive days, things I did not want to do but did to attempt to please the other person. They were dramatic things that I prefer not to talk about.   And the year or so leading up to that, when I likely had an immune system compromised, was what led to my becoming quite ill, with something like the flu.

Like you Martha, that ‘flu’ and its debilitating effects did not go away completely and led to the illness which I now have.   The good news is that in recent months, I have decided that I don’t need to make myself unhappy because I have an illness, that I have a right to enjoy my life, as much as I am able.   I watch less news now and read fewer depressing articles (as much of today’s news is hardly cheerful), and I am avoiding depressing or stress inducing TV shows and movies.   I am finding my joy in my relationships with good friends online, really good lovely nice people.    These ways are leading to less stress, and my body is thanking me for it with less pain and less anxiety.   When feeling stressed, I will more readily now try to get rest, and alternate activity with rest.

******************************************************************
Thanks Tim!

Look for a weekly posting on Tuesdays. And consider being part of the conversation.

Be Well Again,
Martha

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ME/CFS Stress – Letting Things Go

6/19/2018

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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. 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, 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, a heavy load of stress can keep you from recovery. For me, the ME/CFS 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.

So today, I make use of my hard won ME/CFS 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? 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

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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

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Immune Support – Who Do We Listen To?

5/29/2018

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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

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Forward>>

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

ME/CFS Guest Blog by Tim Boland - Codependency and Stress

ME/CFS Stress – Letting Things Go

ME/CFS Treatment – Working with a Provider

ME/CFS Pacing – We Totally Get It

Immune Support – Who Do We Listen To?

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