Mito Moments

Mito moments…when your body aches and fever continues relentless, throat sore, brain fog, demands drowning and you think maybe, in that moment, maybe if you just try a few leg lifts and. Maybe if you do just 5 minutes a day of very minor exercises, you’ll get better…? You cringe remembering having asked your son 3 times in a row the very same thing. You cringe remembering aching with longing when you watched the scene where the woman put on the sticker that read: “I’m In Silence” as you watched Eat, Pray, Love. I don’t want to respond to anyone. I can’t want it. My whole body is gone. Will exercise help?

Something in you snarls “go research.” And you go, promising yourself you’ll maybe exercise after you’ve researched.

Third person is the sign of the observer, the one really hoping to help conserve the energy, the one shielding from judgment. If I speak in third person, this won’t be what it is, maybe?

I’ve struggled off and on with CFS for over 20 years, enduring aplenty and grinning perpetually (except for those moments when no one is looking and I can show the walls my complete frustration). I had a moment, mito, where I thought I was the problem. Just this week. I’ve relapsed on levels worse than ever, my body deciding no more band-aid promises, no more bullying me out the door. Sometimes the body simply refuses. So, I sat in the computer chair and researched CFS yet again, thinking my intuitive urge stupidly hopeful. I know the ins and outs of this monster, know the critical “assessments” and the assumptions: “Oh, isn’t that a depression?” Sure, yeah. It’s the whole body depressed and the mind happens to cave in occasionally. Yup. That’s IT. Oh, that’s not what you meant, is it? Hisss…

I was about to give up when I found something about the mitochondria. Ah. ha. ha. A doctor in the UK has published her study on the effects of d-ribose and other wonderful supplements on CFS patients. Her conclusion?

“The central problem of chronic fatigue syndrome is mitochondrial failure resulting in poor production of ATP. ATP is the currency of energy in the body and if the production of this is impaired then all cellular processes will go slow. It is not good enough to measure absolute levels of ATP in cells since this will simply reflect how well rested the sufferer is. The perfect test is to measure the rate at which ATP is recycled in cells and this test has now been developed by John McLaren Howard. He calls it “ATP profiles”. It is a test of mitochondrial function.

Not only does this test measure the rate at which ATP is made, it also looks at where the problem lies. Production of ATP is highly dependent on magnesium status and the first part of the test studies this aspect.

The second aspect of the test measures the efficiency with which ATP is made from ADP. If this is abnormal then this could be as a result of magnesium deficiency, of low levels of Co-enzyme Q10, low levels of vitamin B3 (NAD) or of acetyl L-carnitine.

The third possibility is that the protein which transports ATP and ADP across mitochondrial membrane is impaired and this is also measured.

The joy of the ATP profiles test is that we now have an objective test of chronic fatigue syndrome which clearly shows this illness has a physical basis. This test clearly shows that cognitive behaviour therapy, graded exercise and anti-depressants are irrelevant in addressing the root cause of this illness.” [Emphasis mine.] Link here:

The UK, of course. Where some of the more epic influences of my life have originated. And absconded to, apparently. I sat there reading this information, poring over it and have to admit I both laughed and cried. It described me more thoroughly than I’d found thus far. And. There. Is. A. Test. WOW.

Let me back up and say that as much as a CFS sufferer remembers the fact that depression didn’t begin this malaise, as much as the CFS sufferer knows of others with equally daunting or worse histories to heal who never feel a second of chronic pain and have never gotten in touch with the inner demons, as much as the CFS sufferer knows the sneering doctors were ignorant and lazy, as much as the CFS sufferer remembers loving life and activity, that same soul feels guilty. I shoulda done figured this thang out. I should have more energy. I’m lazy. I just don’t….

I ended 2 semesters after 23 years of no formal schooling with a 3.8 gpa. I now have 2 years under my belt. And 3 happy kids and blog posts and a relatively neat(ish) house in disrepair and a load of ideas taking shape and personal growth so rapid and profound as to render me a bit shocked. But my body, including cognitive function, began to unravel in July. And now? Nothing left to unravel, apparently. Lazy?

The protocol for ranking CFS fatigue and debilitation reveals how all my pushing has landed me right here, right now in my occasionally-occurring 3 hours of relatively cognizant capability:

“2. Moderate to severe symptoms at rest. Unable to perform strenuous activity. Overall activity 30–50% of expected. Unable to leave house except rarely. Confined to bed most of day. Unable to concentrate for more than 1 hour per day.

3. Moderate to severe symptoms at rest. Severe symptoms with any exercise; overall activity level reduced to 50% of expected. Usually confined to house. Unable to perform any strenuous tasks. Able to perform desk work 2–3 hours per day, but requires rest periods.”

I’m at 3 today. Often I’m at level 2. Mitochondrial failure. The layers of total system shutdown involved in this dilemma is illuminating, shedding light on why every test on my heart has revealed nothing, why I’ve been, not irritated, but alarmed at the diminished cognitive function, the dyslexia, the clumsiness, the…well, it’s endless. And information reveals that the genetic link for mitochondrial failure is through the mother. My mind reaches back to a redhead named Sugar. My mom’s mom. She had these same ailments. Never found a solution, put up with the same scorn. Died suddenly and unexpectedly when her heart failed.

This in particular blew me away: “In CFS the heart failure is caused by poor muscle function and therefore strictly speaking is a cardiomyopathy. This means the function of the heart will be very abnormal, but traditional tests of heart failure, such as ECG, ECHOs, angiograms etc, will be normal.”

More research revealed a test for free-radicals in the bloodstream of CFS sufferers finds amounts equivalent to those in the bloodstream of people undergoing chemotherapy. Gee, why am I useless right now?!

So. Well. And. The next 8 weeks will be spent focusing heavily on therapeutic, intense healing practices. I’ll haunt my blog friends and comment when some of the fog clears. Posting may happen sporadically. Or not at all during this time. Maybe I’ll post about this particular journey. (Decision-making almost impossible lately!) In the meantime, I sorely miss the energy and enthusiasm.

Here’s to healing and hope…

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8 thoughts on “Mito Moments

  1. truly a horrid condition.
    And doctors ignorance about it even existing is the worst injustice on all.
    i dont suffer from it but i know the condition as well as any none sufferer can know

    1. i appreciate the affirmation. it’s true, this is horrid but i know some suffer much worse with this and with other more challenging health dilemmas. i just have to get past the know-it-all relatives who haven’t seen me in over 10 years and have some pretty foul opinions based on all the solidity of very thin air and still hurt feelings with me for not coddling their cancerous delusions. but let me tell you, they are so loving and full of the grace of….

      gulp. did i say that out loud? i’m in a pissy mood. time for bed, take 2! where is that insomnia cure?

    1. thank you, jane. this crash and resulting discovery is an answer to pray, in the final analysis. and i believe the beginning of the end of this illness running my life. i’ll take those prayers and blessings. hugs…

  2. It’s the first time I hear of this disease. I wish you all the best and I’m glad that a treatment is or could be at hand.

    For years I suffered from a skin itch that would overtake my entire body. The itch would worsen in summer times and you’d feel your body itching the entire day until it culminates in a frenzy at night after shower. It takes off from your concentration all day and when the frenzy hits you’d just lay in bed twitching and twirling and scratching your skin; this would last for half an hour or so usually. It turned out that my skin was allergic to water and the allergy increases in summer due to the sweating and humidity. Global warming isn’t working out for me as this is without cure. There are times that I’d be walking the street and moving my hands from spot to spot and people would think I’m possessed or something. It is this bad and it is extremely annoying. I just hope that it won’t increase in the future.

    My heart is with you Ruth.

    1. I believe this latest crash is just what I needed so I could find this info. I’ve been patching my health for years. Operation Ruth Retrieve is in full swing. :0)

      My son had a reaction to water when he was less than 12 months old. His face, his upper body, his arms, all horribly red and rash-covered. It tore me to pieces. I noticed the onset or worsening of it after bathtime. For many months he was washed with hypoallergenic wipes and aveeno baby wash. I knew when water droplets on his face left no red marks that he would be ok. We are so much more fragile than we want to realize and yet so much more resilient than we’ll ever know. The horrible stuff they put in our water is likely the cause. Well water…or…river water, that’s the best. :0)

      Appreciating your big heart…

  3. I never would have guessed that you had CFS. Guess I hadn’t read anything about it previous to this post. I think it is a very debilitating condition and my heart goes out to you. I think of the few days where I feel “wasted” and can not imagine feeling that way day after day. I assure you that, through reading your posts, I never had an inkling that you might suffer from this. I wish our worth was not judged by how much we do but by who we are, each individuals, often handicapped by our own make-up. After all, if we ALL had CFS that would be the NORM. Lazy would not be a label. We should consider that once in awhile before we put each other in categories. You are not lazy!

    1. I posted about it a year or so ago then decided to stop. It’s difficult for me to even admit it to myself, frankly. I manage to hide it from most of the world but my kids know it well. I pushed and shoved myself along for a year of college and did not respect my need for rest, took too big a load. The cognitive function is the last thing to collapse and it’s better these last few days because I’ve been mega-dosing some great supplements. You don’t read my fatigue because my best jive is from my brain to my fingers. Just don’t ask me to talk. :0) Fever is diminished today for the first time in weeks. I pop aspirin, down coffee and prop myself up and am “cursed” with an appearance and demeanor of anything but fatigue until I crash and then everybody goes “OH WOW. I had no idea.” And that’s my fault. When I read that there are several physicians expressing concern for the condition of the heart in some CFS sufferers, it was a huge wake-up call. Time to change. Thank you for reiterating that it’s not laziness.

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