...DEFEAT Chronic Fatigue Syndrome: ...............................................................You don't have to live with it
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ME/CFS New Year - Take a fresh look

1/4/2022

4 Comments

 
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​It’s a hackneyed part of our culture that everyone makes New Year resolutions which we earnestly pursue for one month.  Then we return to our old habitual patterns.  And every year we resolve not to let that happen yet again.  So here we are.  For many, it’s a desire to improve one’s health.  If you’re struggling with ME/CFS, the stakes and the rewards are much higher than the average person who just wants to look or feel healthier.  For us, it’s about reclaiming our lives and our ability to be fully functioning and present – to be well again.
 
I encourage you to take a fresh look at your version of ME/CFS.  Hopefully you are keeping a daily log of your activities, sleeping/resting times, symptoms and medications.  Step back and take an objective look at your patterns.  Look for periods of wellness.  What preceded those periods?  Replicate those patterns.  Look for periods of ill health or crashes.  What preceded those periods?  Don’t repeat those patterns.  Look at your symptoms.  Which are the most debilitating?  When do they flair up?  How can you treat them in order to short circuit the flair up?  Look at your sleeping patterns.  How can you improve the quality of your sleep?  How can you make your bedroom into your version of slumber heaven – light, sound, comfort and sleep aids.  Your daily log needs to be mined for clues as you find your path back to wellness. 

 
If you’ve made progress this year and you’ve managed to shed some of the symptoms that were masking your version of ME/CFS, awesome!  As you take a fresh look, you may get a clearer view of the key or central issues which characterize your version of ME/CFS and some insight into new approaches, strategies and clues to your next steps.  It was through this methodical periodic review that I eventually unraveled my version of ME/CFS and was able to be fully well again.  What will you focus on in this New Year?  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
Ruchama
1/4/2022 07:12:49 pm

I find your advice rather daunting. First my main "triggers" are eating almost anything more than a bagel and tea or a few crackers and vegan cheese and standing up for more than 10 minutes. Pretty hard to eliminate those. I have a weighted blanket and an excellent sleep mask. Doesn't matter my sleep sessions are almost always no more than 3 hours at a time, some times 4 and on a rare occasion 5. Brain fog less frequent if I'm sitting, but will still kick in after more than an hour or two of creative work. Infrequent symptoms like itching or "pins and needles" come out of the blue. No daily log will catch them because they are intense, but rare. At this point I seem to be better off adapting to my condition than taking time to create a record. I'm acutely aware of the limits on my time and energy and that sort of record seems and extravagant spending of both.

Reply
Marta
1/5/2022 09:49:42 am

Ruchama, I completely agree that it's daunting. My list of questions were not meant to be addressed all at once. And I understand the frustration of not knowing where to focus because it's all critical. Full disclosure, I did not willingly start keeping a daily record and when I did, believe me it was brief and I resented the 10 minutes a day that I spent on it. I was bedridden at the time and every ounce of energy was precious. As I read through your symptoms, the one that jumps out to me is your inability to sleep more that 3 hours at a time. I too had that same limitation. On top of my illness, I had spiraled down into a state of chronic sleep deprivation which compounded every other symptom that I had. When I finally connected with a doctor who had experience with ME/CFS, he wanted to focus on that in order to give my body a chance to deal with my actual illness. He prescribed a muscle relaxant and a very low dose of Elavil to take at bedtime. After a few weeks, I was sleeping well past the 3 hour mark regularly and was able to break the cycle of sleep deprivation. I offer this understanding that we all have different metabolisms. Hope you are able to progress in this new year.

Reply
Tim Boland
1/11/2022 03:53:46 pm

I am doing a little better at writing in my health journal, Martha. As my diagnosis is 'chronic fatigue syndrome with symptoms of fibromyalgia', I have pain and numbness in various parts of my body.

I have been doing noticeably better on some days. I find that when I become stressed or my body is feeling more pain, then if the day allows (and most days do), then I will head for my recliner which goes far back, not quite flat. I also take off my socks as some socks tend to squeeze my feet and restrict my circulation a little and cover myself with a comfy comforter.

I am working toward a mantra which for me goes ‘my body’ and then ‘my health’. These remind me of the importance of feeling what is happening in my body and often even a 15-20 minute rest makes a difference, and my symptoms usually will decrease. I am also practicing self love, for me that means doing my best to honor who I am as a person, and as a Buddhist to not judge myself harshly if unpleasant memories or emotions arise, to not repress them and do my best to work through them, which is a process.

Also reading uplifting or interesting books helps me to relax, and I also read a little at night before sleeping, only a few pages, and listen to a relaxing CD with the sound barely audible.
I also take a small sleeping pill and pain pill as prescribed by my doctor as I too was having a great deal of trouble sleeping in the early days of this illness.

Reply
Martha
1/12/2022 09:30:11 am

Tim, I applaud how closely you pay attention to signals from your body and act to preserve your energy levels. Honestly, I mostly fought my body for the first half of my illness. Your intention not to self recriminate is great. Our bodies have enough to heal without us adding more on top of it!

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    Hello,  I'm
    Martha Kilcoyne

    Welcome
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    After struggling with CFS for four years I am fortunate now to be fully well and making choices about how I want to live my healthy life.  One choice is to be an active part of the CFS community and to offer one voice from the fully recoverd to the dialogue.  I'm glad you're here!   For more about me, here's my Bio.

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