Some days there’s no other description for what Dr. Myhill has tagged “pacing” … an essential component of the CFS/ME daily survival reality. Along with a ridiculously long list of supplements I can’t do without, there’s this lil thing called pacing. It can often be described as purgatory. Some docs say a CFSer should rest 3 minutes for every 1 minute of activity. O.o That leaves no time for an actual life and makes a ton of sense if you’re in the worst of the CFS badlands. Fortunately, I’m not there. But, I’ve been close to the edge of that horrible wasteland and have had to up the pacing realities. So, what does it mean? It means I’m up and working for a few hours and then on the couch with the laptop. Or without it, flat on my back staring out at the trees and sunshine. Or I’m in a chair under those trees. Last week, I went bowling with my daughter on her birthday. I was described as graceful and fluid in motion. But. What did it feel like? My knees almost buckled 3 times. My upper body was screaming, my back howling and my legs literally shaking. How do you hide this? You sit down as soon as you’ve taken your turn. You breathe deeply, sip at the water you brought and refuse to panic.
The result? 3 days on the couch with occasional outbursts of here and thereness, popping Ibuprofen (it’s against my nutrition religion to do that but i do it when desperate), rubbing magnesium oil on the pain-filled limbs and riding the wave of agony.
Put this in perspective. What kind of person am I? The running/sprinting, take me to the river, up the mountain, down the beach and to the bowling alley, down the bike trail type. Oh and there are the random dance fests. I miss it all. And I have not had the chance to really fully cultivate who I am outside of this purgatory, when things weren’t as bad as they’ve been for this almost 6 year stretch. Why? Because this “syndrome” (insert expletives here) has been part of my life since my early 20s. That’s 20++ years.
So. How does someone in purgatory find the meaningfulness in it all? Well…there’s this river perpetually flowing beneath the surface of every moment, and under trees and in the breezes blowing by, in the conversations filled with heart and soul, baring vulnerability and frustration, joy and longing. We’re here for these pleasures, and for the honor of meeting the challenges love tosses our way from time to time. But some times only a raging ranting session of frustration venting proportions will do. Pacing the emotions…pacing the body…corralling the longing into deeper appreciation for everything from birdsong to treespeak to…
When my body’s not being held hostage by the worst of CFS, I prefer to use the T-Tapp approach for fitness. Check the introductory video below.
Note: If you are struggling with CFS, muscle exhaustion is not a goal you want to strive for at this time. There’s “struggling with CFS” and then there’s being on top of it, where you can fatigue or work out your muscles regularly. If you’re in the struggle zone, then you determine what’s best for preserving muscle function without exacerbating the situation. I’m currently working my way back up to the 15 minute routine. Maddeningly slowly.
Doctors with expert advice for CFS/ME sufferers recommend establishing some basic, sustained improvements (good sleep, optimal eating, supplements, tests, stress management, pacing) before embarking on any fitness routine.
I’ve had this nagging something about almond flour. So. I did a bit of research. Here’s what I find: “Okay, quick chemistry reminder. Saturated fats have single bonds between all the carbon molecules of the fatty acid chain. Monounsaturated fats have one double bond replacing a single bond in the carbon chain. Polyunsaturated have more than one double bond in the carbon chain.
Double bonds are more unstable than single bonds. The more double bonds in a fatty acid, the more unstable it is (polyunsaturated is the least stable, followed by monounsaturated, followed by saturated being the most stable). When the double bonds break, the fatty acid undergoes a process called oxidation.
Processing, heat, light and pressure all cause these double bonds to break. Raw (or soaked and dehydrated) almonds have their polyunsaturated fats intact, and so the only fat issues are those discussed in the previous section. But putting almond flour in a hot environment–like an oven–is going to break some of those double bonds and create oxidized fatty acids.
Why are oxidized fats bad? In a nutshell, oxidized fats = free radicals. Free radicals = cell damage. Of course, we will inevitably have some free radicals in our body. Fortunately, we can consume sources of antioxidants (like fresh fruits and veggies) to combat free radical damage. But if too much oxidized fats, like from large amounts of almond flour, are consumed, our body is depleted of antioxidants and damage to body cells ensues.” From Empowered Sustenance
I’ll have to add this one to my list of resources. She’s right. Time to reacquaint myself with coconut flour.
“Low intracellular magnesium is a symptom of CFS and a cause of it. This is because 40% of resting energy simply fires sodium/potassium (Na/K) and calcium/magnesium (Ca/Mg) membrane ion pumps. So when energy supply is diminished, there is insufficient energy to fire these pumps, so magnesium cannot be drawn into cells for oxidative phosphorylation to work, so there is a further diminishing of energy supply. This is just one of the many similar vicious cycles in CFS. Sufferers do not simply replete through taking magnesium supplements – although this must be tried! Some need magnesium by injection to get the desired result.” Dr. Sarah Myhill
Oral supplements initially provided great results for my particular situation but my starting point was so low that it was not difficult to create an improvement. I essentially went from feeling horrible whether lying down or moving around to feeling much better when resting. I’m significantly past that phase. But since my improvement has plateaued, I’ll have to up my game.
“In CFS the problem is micro-pathology (intracellular, immune and biochemical problems), i.e. problems inside cells and on cell membranes. This is why standard medical tests do not come up with abnormalities.” Dr. Sarah Myhill
CFS/ME definitely comes with the stigma attached. I’ve heard the first one here: “It’s a depression.” or “They just want attention.” or “Hypochondriac.” The first doctor to run a series of tests on me to eliminate the possibility of “real” illnesses shook her head and said that I must have the “yuppy crud.” She later implied it was all in my head.
Stigma creates a climate of shame and defensiveness. Eventually my anger won the battle and I diagnosed the medical profession with ignorance and put my health in my own hands.
One of the many gems I’m finding on The Optimum Health Clinic’s website includes this affirming bit:
“Stigma around the illness and lack of understanding in our experience directly reduces a patient’s expectation of recovery and creates stress. We have patients tell us stories like friends being diagnosed with cancer at the same time as they were diagnosed with CFS/ME and noticing the level of understanding, support and sympathy available with a clear, accepted illness. The friend would tell them they were happier to have been diagnosed with bowel cancer than go through what they would face with a diagnosis of CFS/ME.” – Taken from their paper entitled “The Application of Integral Medicine in the Treatment of Myalgic Encephalomyelitis and Chronic Fatigue Syndrome”
So far, this website has inspired me to order their info pack. Next is the interview. I’m very impressed.
“If the blood supply to muscles is impaired, then muscles quickly run out of oxygen when one starts to exercise. With no oxygen in the muscles the cells switch over to anaerobic metabolism, which produces lactic acid and it is this that makes muscles ache so much.
As well as the above problem, muscles in the CFS patient have very poor stamina because the mitochondria which supply them with energy are malfunctioning.”
Dr. Sarah Myhill