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ME/CFS Guest Blog - Embracing Rest by Grace Liggett

6/25/2013

So, my biggest terror now is this illness. I know that CFS is real, which means I know there are endless people who are suffering, physically, with this and other illnesses, that don’t have the option of resting and medical care and unemployment. There are people with debilitating illnesses who are not able to be debilitated or step off the treadmill of their lives. Their responsibilities, needs of others, finances, conflicting relationships, access to education, mobility, mental health, etc. already hinder their chance at the already daunting process of recovery. And they have to keep going. Pain. Darkness. Sit with it.

I am lucky enough to have the opportunity to Rest and Hope and Find A Way. CFS may be calling (forcing?) me to truly empty my life and myself. Not just cut-back or take time off, but truly purge who I am and the life I have lived. Take it all away and just sit with it. CFS is asking me to have patience, but not the kind of patience that it takes to wait a long long long time for a promise to be fulfilled, but the kind of patience that happens even under the knowledge that things may never change. I may never be physically well again. I might always be in pain. I have to sit with this, one day at a time, and try to connect with the Now.

My shrink reminded me one day that none of us have a guarantee beyond the present, that tomorrow is anyone’s guess, with or without illness. I resented her comment then for its simplicity and Hallmark Buddhism, still clinging to the notion that I need some sort of tool to plan ahead, some sort of path to envision for the future (like I want to know if I will be able to have a career, fall in love, travel, have a family, etc. ever). But I think that, for right now at least, I am just supposed to Rest. It is all I can do to keep up with my dog, my apartment, my family, my hygiene, my sanity. Do less, but with more attention. And maybe if my body begins to feel energetic again, or if some of the relentless pain yields, I can bring other things into my life. But, for now, it is enough just to Be. And to be grateful that I can simply rest. So...

Dear Rest,

I have given you a bad name. I have resented you and regarded you as a sign of weakness, defeat, doom, and punishment. When in fact, you are a vast and beautiful creature. Rest, you can be an experience as pure and as dense with life as summiting a mountain or making love. You are a gift and I am privileged to have you in my life. Going forward, I intend to embrace you and get to know you better. I will enjoy you, Rest, and leave my negative attitudes behind for the luxury of your mystery.

Yours Truly. Grace
Grace's Blog staysoft.wordpress.com
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Thanks Grace! How do you embrace rest? Do you have any strategies that work? 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

2 Comments

ME/CFS Healing – The Challenging Last Phase

6/18/2013

2 Comments

Just recently I received an email from an ME/CFS patient who has been recovering and has reached a better level of functioning but has stopped progressing. This is a story that we are all too familiar with. Many of us have reached that level but can’t seem to get to the next and often last phase of full recovery. I am not an exception. I spent several rounds in ‘Almost There’ territory myself. The first few being miserable failures where I could see and feel the possibility of full recovery and I dashed to what I thought was the sure finish line. We all too familiar with that story too.

Yes, I crashed and was worse than before each time. Did I learn from this? Not at first. After two of these devastatingly disappointing setbacks, I got the message. I needed to be as careful and as intentionally paced in the last stretch as I was in the first few when my body’s messages were clearer and easier to read. It took great restraint to succeed in making a full recovery. But I made it.

There is a prevalent message in the ME/CFS culture that patients have to learn to live with ME/CFS. According to the accepted mantra, no one fully recovers. This is SO not true. Yes, there are many different dis-eases mixed up in our cruel ME/CFS diagnosis. But many patients do fully recover - they just don’t talk about it. But that’s a topic for another blog. My point is that the last phase of recovery is so personally challenging. If it was easy, we’d all be fully well. It takes even more focused attention and ‘case-study-of-one’ perspective because the clues, symptoms and patterns are much more subtle.

Where are you in your recovery? Are you at a level with no forward progress? 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 Diagnosis – My Version

6/11/2013

6 Comments

Ion Channels

OK, picture me dragging my soap box out into the central square of your local park. Hear the sound of the wood being dragged over the hard surface of stones. See the people looking up and pausing, wondering what this odd woman is up to. As I step up onto the box and clear my throat, everyone is now staring, expectant of what this person has to say. Prepare yourself, I am about to pontificate. Here goes.

I believe fervently that everyone who is suffering with ME/CFS needs to know what my version of ME/CFS turned out to be. Yes, I know that we don’t all have the same disease and that we’ve been stirred into a confusion of diagnoses all mixed up in the same cruel pot. And I also know that many of us shouldn’t even be in this pot as we have been miss diagnosed and we actually have other known diseases with known treatment plans. Yes, I know all of that. BUT, whatever triggered my version of ME/CFS, and as much as I followed the protocol, there was one key that we finally found, thru a constant review of my detailed daily health log, that was the last piece of the puzzle. We think that this condition may have been triggered by my long term illness and may not have even been the original cause of my dis-ease. Whatever the case, we eventually discovered that I was starving at the cellular level. No matter what positive foods I ate, no matter how much I rested, no matter how much I worked my treatment plan and cut myself some mental and emotional slack, I was getting better and better but eventually hit a wall. My functioning was vastly improved but I just couldn’t make that next step back to full health and ‘normalcy’.

It turned out that I was suffering from a ‘mild’ form of Ion Channelopathy. You can read about it on this website under the menu option ‘Further Lessons’. BUT don’t go there until you’ve finished reading this blog. OK, still on the soap box, DO NOT run out and buy a tub of salt and start pouring it down your throat, gram after gram. This will definitely make you sick!! One person did that and couldn’t understand why he felt worse – duh. Understand that I drank and ion cocktail just ONCE a day. It took MONTHS for the cellular walls to reset and repair. After one month of daily, reasonable treatment, I was starting to feel a little better. This continued for SIX months of patient, continued following of the protocol. This is NOT the silver bullet. And it won’t be the solution for most. I only pontificate on it because I’d like to get it on the ‘screened for’ list so that a few more of us can get out of this cruel, wastebasket diagnosis.

OK, I’m putting away my soap box. Thanks for listening. You can go read the ‘Further Lessons’ article if you promise to be balanced and reasonable if you think it fits your situation. So, enough about me. Have you found an important key to your version of ME/CFS? Let us know as it might be important to someone else. 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

6 Comments

ME/CFS Diagnosis – It Requires a Case Study of One

6/4/2013

4 Comments

We all know that ME/CFS is a wastebasket diagnosis. Although we all share a common group of symptoms, there are no definitive tests or measures that actually show that we have the same causative disease. As most people believe, there are many diseases currently grouped as one under the ME/CFS umbrella diagnosis. For me, the healing actually began when I finally accepted the lack of specificity of my ME/CFS diagnosis and started to solve the puzzle of my own version of ME/CFS.

Along the way I was diagnosed by many well meaning and somewhat helpful family and friends and also by more negative people most of whom labeled me with all kinds of diseases and determined, whether they had met me or not, that I didn’t really have ME/CFS. They decided that I actually had ‘fill in the blank’ flavor of choice. I don’t think this was a unique experience for me. I would guess that most patients who get the ME/CFS diagnosis have to deal with some judgmental ‘know it all’s.

If you’re not already on the ‘case study of one’ track, I encourage you to start. This means keeping a daily health record with times, activities, symptoms, treatments, nutrition, etc. The time is well spent as you begin to see, after a period of time, a true picture of your real disease ebb and flo - not marred by ME/CFS brain fog. Are you keeping a daily health record? How are you tracking your specific version of ME/CFS? 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.

I will be out of WiFi range starting Thursday for four days. I’ll be back next Monday.

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

Be Well Again,

Martha

4 Comments

ME/CFS Guest Blog - Embracing Rest by Grace Liggett

ME/CFS Healing – The Challenging Last Phase

ME/CFS Diagnosis – My Version

ME/CFS Diagnosis – It Requires a Case Study of One

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ME/CFS Guest Blog - Embracing Rest by Grace Liggett

ME/CFS Healing – The Challenging Last Phase

ME/CFS Diagnosis – My Version

ME/CFS Diagnosis – It Requires a Case Study of One

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