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

ME/CFS Apprehension – Letting It Go

7/9/2019

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.

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 affect 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 Choices – What would you Decide?

6/25/2019

Lately I’ve been making decisions about what I want to be doing – real, active, conscious decisions. I’m getting to the point in my life where odds are, there is less of it ahead of me than behind me. The term ‘bucket list’ has become popular. But I’m not thinking about specific events or activities that I want to check off a list. I’m thinking about the way I want to live my daily life. And, of course, this has gotten me thinking about my struggle with ME/CFS and what I’m doing with my hard won, regained wellness.

Once I knew that ME/CFS was in my past, I did not choose to go back to the fast paced, stressful life that I led prior to being ill. I decided to live a life focused on my family and to make better wellness decisions. In retrospect, I’d say that I was reasonably successful in that choice.

If restoring your wellness is your current goal, imagine the kind of life you would choose to live, having been through all this, if you were well again. Would you go back to the old pace? The old ways of marginal self-care? What kind of focus would you have in life as a well person? When you think about your prior lifestyle choices, which would you resume? What would you dump? 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 Attitude – The Law of Attraction

6/18/2019

I was feeling down recently - kind of an internal implosion resulting from too many people and things weighing on me culminating with feeling sorry for myself. For a period of time I allowed myself to be in that place. And that was OK because sometimes we need to feel emotions in order to decide what to do about them. And it gave me a small taste of my lowest points when I was struggling with ME/CFS.

I am however, at my innermost core, an optimist and that part of me eventually asserted itself and demanded that I move on. I was reminded of the Law of Attraction and the theory that by focusing on either positive or negative thoughts, we attract the same energy or results. The most documented example of this is the placebo effect which produces positive health results in blind medical trials where the patient is only given a simple sugar pill. Patients are able to think themselves better. I was not aware that there is an equally well documented nocebo effect which produces negative health results in clinical trials where a placebo is used. People who fear medication or who have a negative medical image can actually cause deterioration in their own health. Powerful stuff.

For me that’s a strong statement about how much control we actually DO have in dealing with ME/CFS. Once I turned the corner away from blame, denial and anger, and moved forward into solving my ME/CFS puzzle as a case study of one, I began to slowly get better. And yes, I was actively managing my health every day and it was no accident that the daily scrutiny finally resulted in my return to health. But my positive attitude directed at my determination to figure out my version of this cruel disease, was a big factor in succeeding despite the long haul. How do you manage your daily attitude in order to attract positive healing? What strategies work 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 Memory – Write It Down

6/11/2019

Tim Boland - Payette River, Idaho

As I age, my memory seems to fail me at unexpected times. I can’t recall the name of a flower that I’ve know for a decade or the name of a street that I’ve driven a thousand times. Recently, I couldn’t remember the name of a friend’s daughter and I wrestled with my memory to pull it up as I stood there with a blank look on my face. And of course, it reminded me of the brain fog I experienced daily when I struggled with ME/CFS.

During my ME/CFS days, I would be in conversation and the entire topic and my thoughts would slip away into an awkward silence. Trying to pay bills or add up simple numbers was painstaking. But most of all, I would loose track of entire days or weeks. I couldn’t recall the simplest timelines. And I struggled to get any sense of progress until I made the commitment to write it down.

Ok, I admit to having a mantra about keeping a Daily Record. And it stems from the realization that it was my daily record that over time gave me the clues to My Version of ME/CFS. I encourage everyone who is struggling with this cruel disease to faithfully keep a record of sleep, activities, rest periods, food and medications during the course of each day and night. It takes about five minutes a day to write it down in a simple, easy-to-review format.

What kind of record do you keep? What information has proven invaluable? 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 Perspective - The Inner Voice

5/28/2019

When you are struggling with ME/CFS, it’s hard to see anything else. ME/CFS controls your energy, your schedule, your choices, your physical comfort, your day, your night and your outlook. Everything you consider is be interpreted through your ME/CFS 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 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 Goals – Celebrate Each One

5/21/2019

The last couple weeks have been non-stop activity. We have been celebrating a friend’s graduation from college with senior shows, events, special dinners and of course the official commencement ceremony. She has been focused on getting here for the last four years and has been successful due in major part to her focus and undistracted commitment. And of course I’ve been thinking about my struggle with ME/CFS. How grateful I am to be well again and able to fully participate in the celebrations but also because she has succeeded the same way that I succeeded in recovering from ME/CFS.

After struggling for several years, trying everything we heard about and searching for the doctor who could give us the answers to my illness and the magic pill so I could get my life back, we finally realized that there wasn’t an easy answer. So we decided to try a new approach. The long term goal was to be fully well again. But we knew that there were many small goals between the present and my healthy future. We had to string many smaller goals together in order to reach the ultimate wellness goal.

And so it has been with my friend. Over the course of four years, she has set her goals one semester at a time. And for me it was this same step by step approach that finally worked. I broke the whole goal down into reasonable chunks. And as I achieved each goal, we celebrated. I’m not talking parties. Just simple recognition of what it took to get there and acknowledging the progress. This gave me the validation to keep going.

So what’s your next short term goal on the road to wellness? What have you celebrated lately? 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 Supplements – One Combination Doesn’t Fit All

5/14/2019

I’ve started taking supplements to fill in some gaps in my nutrition and this got me thinking about common practice today in the use of supplements for ME/CFS treatment.

Most providers who see ME/CFS patients recommend a regimen of supplements. They can include pills, IV, shots and ‘cocktails’. Patients report a range of results with these methods from revitalizing to ‘maybe it helped.’ If you’re seeing a practitioner who has recommended such treatments, be sure that the ratios and combinations of supplements are based on your metabolism. There are tests and blood chemistries that can be run to get an accurate picture of you and your needs for treatment. Many of these treatments can be expensive and it can be a sacrifice to pay for them. If you’re not feeling measurable improvement, revisit your doses and combinations with your doctor.

From my own experience, the first doctor who actually treated me for ME/CFS, relied on his prior experience with ‘patients like me’ and prescribed a similar plan. Although this first step got me to a healthier plateau, it wasn’t until we figured out, through trial and error, what I specifically needed for supplements that I was able to get on the right road to recovery. Are you taking supplements as part of your recovery plan? What do you think of their efficacy? 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 – It Takes Some Dedicated Time

4/23/2019

Every once in a while, I drag out my soap box…. Here I go….

I frequently receive emails from people who have been struggling with ME/CFS for way too long. This is such a cruel disease. And I know that everyone’s situation is different with demands and responsibilities. But recovery from ME/CFS, at least for me, came at a price. A very high price. I literally gave up two years of my life in order to recover. And, as you already know, I hated every minute of it up until I started to taste how it used to feel to be well. And when I got that taste, I had hope that I could recover. Full disclose: I had to repeat that ‘first taste’ experience three times before I fully understood what I needed to do next which was nothing.

I needed to stick with the protocol and rest. I needed to stay right where I was and continue to do all the self-care that had gotten me that far. And that’s when I truly began to hate the protocol. As I felt better and better, I continued with the restrictive protocol. Ad nauseam. Hated it!!

How long have you been struggling with ME/CF? What quality of life are you living? Is there any way that you could arrange your life so you could dedicate one year to only being a Patient? One year to hating the protocol. 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 my next posting on Tuesday May 14th. And consider being part of the conversation.
Be Well Again,
Martha

ME/CFS Attitudes – Rainy Days Made Me Happy

4/16/2019

It’s a cold rainy day in New England after several warm spring days. For the middle of April one might expect something different. But I’ve lived here my whole life and one can always count on the weather to change moment to moment. So today, as I settled in for a less active indoor day, I started thinking about my struggle with ME/CFS and those rainy days. One might think that like some people, rainy days would have seemed dreary and sad back then. But the opposite was true. Rainy days made me very happy.

Why? When I was struggling with ME/CFS, sunny warm days made me miserable. I wanted so much to be out and going about my life. And lovely days were a tough reminder that I was too ill to participate in my own life – in anyone’s life. Those days seemed twice as long as normal. They dragged and dragged and dragged on some more. Those days were depressing.

I must admit, somewhat ashamed, that cold rainy days made me feel like other people might have their days limited as mine were. Not with the physical symptoms of ME/CFS but the limitations on mobility. The restriction of activity and possibly some of the isolation. I felt like other people were stuck in it with me. A sort of warped sense of misery loves company. And this made me happy. OK, not one of my best moments.

As I began to understand that I needed to get off the ME/CFS roller coaster and focus on a real recovery plan, this weather influenced attitude began to change. My daily approach to healing became a matter of choice as I was no longer a victim of ME/CFS but rather someone who was on an intentional recovery path. Nowadays when I’m trapped indoors on cold rainy days, I like to make the best of it and imagine I have lots of company. And a nap is nice too. How do you relate to cold rainy 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

ME/CFS Stages – Resist Rushing to the Finish

4/2/2019

Several years ago, I was part of a committee charged with building an outdoor labyrinth at our church. We worked on this task for over four years. It was, at times, so frustrating to try to continue despite the many obstacles that were thrown in our path. There were moments when I had the urge to construct a quick ‘midnight’ labyrinth that would suddenly appear the next morning. But, of course, that would have been a weak effort, not fully sound and would not have lasted very long before degrading back into something unsustainable. The parallels with ME/CFS are unmistakable.

When I was struggling with ME/CFS, I would begin to make progress. I would actually be able to handle a trip to the grocery store. I was elated! And afterward, there was no crash. Yahoo! This was it. I could taste the satisfaction of recovery and being back to my old self. Followed by another day of moderate activity. Still feeling good. And then, in a rush, I would pick up the pace and get back to my old ways. We all know what happened next. Full plunge crash - and feeling worse than ever. I was not fully well and could not sustain the pace before degrading back into ME/CFS. Full disclosure, I’m a bit embarrassed to say, I did this several times. Several times! What was I thinking? I just wanted it SO bad, that I would rush to the finish.

Then the day had finally come, after years of planning, winning over the congregation and having a contractor lay a solid foundation of compacted crushed stone with a final layer of heavy, screed sand, we assembled the labyrinth. Led by our committee and supported by a hard working army of volunteers, we laid out the intricate pattern of stones, cutting some as necessary, to form the paths of the labyrinth. It looked beautiful and was solid underfoot. It has lasted a long time - only because we didn’t rush to the finish. We kept to the consistent, detailed pace. It was a wonderful milestone - excuse the pun. But even then, we were not done. The contractor returned and compacted the surface to ensure that all the stones stayed in place. Then they filled all the gaps with polymer sand to lock the stones together. They regraded up to the edge with loam and reseeded so the grass would regrow around the labyrinth. And we all know how long it takes for grass to grow and fully take hold. After all these years, it still looks great.

If you’re struggling with ME/CFS, please resist the urge to rush to the finish. It is SO tempting. But resist you must. How do you deal with keeping to your successful pace? What are your strategies? Please COMMENT or Send in your thoughts and I’ll post them. You can use the Contact Form or send an email to Martha at DefeatCFS dot net.

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

Be Well Again,
Martha