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: http://drmyhill.co.uk/wiki/CFS_-_The_Central_Cause:_Mitochondrial_Failure
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…