Strategies I Use To Bear ME/CFS

I have had ME for nineteen years, from age 44 to 63. I live alone. Here is what has worked for me so I can function better and reduce pain.

Athlete To Feeble Crone Overnight

I was athletic with a life-long top-notch immune system, had an active social life and two successful careers as an actress and a musician, but that all vanished suddenly when I got a flu and never recovered.

I went from the prime of life to feeble old crone overnight. For three years, the diagnosis was “post-viral fatigue”. Then it graduated to (Myalgic Encephalomyelitis) ME/Chronic Fatigue Syndrome. I have never been prescribed a medication for this disease, which is pernicious on many levels and exacerbated by being a hidden disability.

I live in Ireland, where we have a free public health service. When I joined an ME support site based in the U.S. I was astonished by the number of medications that my fellow sufferers there had been subjected to. I say subjected to because these medications are not only useless but often detrimental. I conclude that U.S. cultural factors are responsible for the difference in our experiences of treatment — minimal public health care, big bucks pharma industry married to medical practices, and subsequent advertising revenue from the possession of people’s private information, plus the ‘quick fix’ mentality of U.S. culture all contribute to this situation.

The only advice I got from my doctor was to do ‘stepped exercise’. I was horrified at the very idea of wasting any precious and fleeting energy on simply going for a walk. Nevertheless I did try ‘stepped exercise’ but it was extremely detrimental and thus I learned to trust my instincts about this disease and how it affected my body.

Trust Your Instincts And Listen To Your Body

My first instinct was “My cells cannot get enough oxygen, so my mitochondria aren’t working properly.” This has recently been proved true by doctors who also got ME, and therefore researched it. Mitochondrial disease is an autoimmune disease. I added some things to my diet to improve my mitochondrial health, and spirulina supplements are good, while judgement is still out on avocados. (Why is it so hard to get avocados that don’t rot?)

Oxygen-4 or Oxozone

Oxygen-4 is an unstable type of oxygen, so you cannot bottle it, but it is found by the sea shore. Some plants use oxygen-4, like sweet corn, tomatoes, fuchsias. Whether they also emit oxygen-4 back out again I would be curious to know. I know that being near the sea energises me. I had a shot of a friend’s oxygen bottle, and that did nothing for me at all. I conclude that my mitochondria benefit greatly from Oxygen-4.

Pause. Meditate

If I had to sum up my best strategy for coping with ME in one word, it would be: Pause! As often as necessary and then some. People might look at you strangely if you are in public, but pay no heed to them. Often enough the opposite is true and I am invisible!

Pause was already a strategy for me, and then I enhanced its effect, five years ago, when I learned a form of Tibetan meditation. You can practice this form of meditation anywhere, anytime, any length of time, with your eyes open or closed, walking along, driving even, sitting outside, or lying down. When I pause, I stop. I close my eyes and relax every muscle I am able to. I recite my meditation mantra until I am able go on. Repeat. This meditation practice also gets me to sleep easily. I also combine it with a breathing meditation, where you repeat this sequence three times: Breathe in through the left nostril and out the right nostril, for three breaths; Breathe in through the right nostril and out through the left nostril, for three breaths; Breathe in through both nostrils and out through both nostrils, for three breaths. It was a surprising revelation that you can actually control your nostrils like this without having to hold them closed with a finger!

Lactic Acidosis And Fermented Foods A Big No-No

When I do get a brief reprieve/remission from severe ME, there are so many basic tasks waiting for my attention that I inevitably over-do it, over-working my muscles and feeding the cycle of lactic acidosis build-up and painful micro muscle tears. ME is so often one step forward, five steps back. It is still very hard for me to pace myself if I get a good day.

For the lactic acidosis I gave up yogurt and soy sauce and saw huge and immediate improvement. I did not learn about the lactic acidosis from a doctor or any funded research on ME. I ‘reverse-engineered’ my symptoms by researching on line, and concluded that the mysterious pain of ME is micro muscle tears, caused by lactic acidosis. The only treatment for micro muscle tears is complete rest. Then they heal. It turns out I was already somewhat familiar with lactic acidosis from my former life as a long-distance runner, but I knew it as ‘shin splints’. That is when your muscle tears away from the bone, and can be ameliorated by stretching well before exercise. The treatment for lactic acid build-up is also preventative, by excluding fermented foods like yogurt and soy sauce from your diet. Luckily, tempeh (soybean ‘cake’, grown through with the mycelium of a fungus called Rhizopus Oligosporus, which turns soy beans into a superfood in that it makes all the B complex vitamins actually accessible) is not in effect a fermented food, and is the mainstay of my diet for three years.

Being a natural vegetarian, fresh fruit and yoghurt was my daily breakfast, but the benefits of giving up yoghurt and soy sauce were so immediate and obvious that I have never looked back. I eat porridge and blueberries now for breakfast. I love cheese, but only fresh cheeses are not fermented —fresh cheeses would be those that are soft, white and spreadable. (Kefir and Kimchi are also fermented foods, but I never bothered with them in the first place). I still get muscle tears and the pain to go with them sometimes, but only when I have lifted something too heavy, or done prolonged strenuous activity without pausing enough. Somehow, it makes it easier to bear the pain since I know what caused it. I must have made a conscious decision to override my own advice, knowing full well of the consequences. Sometimes you just gotta do it! Suck it up.

Adrenaline

Because I live alone in a tempestuous climate, with animals and a beloved garden to care for, sometimes I have to deal with emergencies even if I am extremely feeble; I happen to have a malicious bully of a neighbour, and thanks to having to defend my garden from one of his sudden attacks, I understood that not only had my body used adrenaline in order to enable me to do so, I also had the sudden revelation that my body used adrenaline a lot. “Where did I find the energy to do that?” I marvelled, “must have been adrenaline” Then I felt nauseously weak and unable to remain standing. I drank two glasses of water, crawled to bed and could not get out of bed for ten hours. Well that was familiar, as I experienced the same nauseous weakness every time I crashed in the middle of an unstoppable task but had to push through with it regardless. I looked up the symptoms of the aftermath of an adrenaline rush, and lo and behold, they matched. It makes sense. I think the first benefit of Pausing is that it sends a message to the body that it is not necessarily in a fight or flight situation. Can we consciously control our hormones? I would have to answer yes, to a degree anyway, and with practice. By the way, adrenaline is also called epinephrine, and is not only a hormone but also a neuro-transmitter. Be careful not to rely on adrenaline too much, as it is toxic and overloads your kidneys. Drink extra water if you have pushed yourself. Another similar ‘power hormone’ is serotonin, released when we sleep and also when we meditate.

Dopamine And Red Wine

When I got ME, my mitochondria stopped working properly (or the other way around); Mitochondria are the power-house of every cell in your body. There are five other internally produced power-sources for the body, (or six if you count your chi), and adrenaline is perhaps the best known one. Another one is dopamine. I had already become tee-total by the time I researched adrenaline, but I had been in the habit of drinking red wine every day. I found red wine gave me energy, and helped emotionally; As the years passed and my social isolation increased I used red wine more and more to a worrisome degree, because I always wanted more. Then I gave it up completely in order to save money to buy a greenhouse. I got the greenhouse eventually, and it expanded my horizons 100% and still gives me great joy. I also found that I really enjoyed being sober and, cognisant of the pitfalls of alcoholism, it was a no-brainer to remain sober all the time. Luckily I did not inherit the alcoholic gene so it was not that hard for me. Fast-forward a few years. Imagine my surprise when I learned that red wine, and of all alcoholic beverages, only red wine, stimulates the body to produce dopamine! “HAH!” I thought, and felt quite vindicated. I did briefly consider a return to using red wine, but decided staying tee-total is the wisest course for me. Besides, I had already learned meditation techniques and incorporated them successfully as my way of living with ME.

Tai Chi And Chi Gung For Enforced Sedentary Lifestyle

With the physical limitations and the mental stress of ME, it is common for the body to develop energy blockages and imbalances. Chi is the Chinese name for your body’s overall energy flow and balance. Tai Chi and Chi Gung exercises will remove energy blockages and help your energy flow. You might have seen videos of Chinese workers all doing Tai Chi together in the park or before work; a wise and beneficial practice!

I am lucky enough to have found a teacher of 19-Step Tai Chi, and went to a class with a friend. 19-Step doesn’t take long to learn or perform, and is very gentle exercise that I can manage most days in my tiny living room, and works every muscle of the body. Because it is slow anyway, you can do it in your own time and pause whenever you like. Masters can get the benefit of it by just imagining the moves! (I try that, but do not get very far.) Tai Chi is extremely beneficial for my enforced sedentary lifestyle.

Brain Training For Brain Fog

I do logic puzzles (Sudoku), play patience card games, and play scrabble on-line against the computer. I do at least two every day, no matter how fatigued I am. I call it my memory homework, and if I miss a day I regret it immensely because the next day my brain has fogged up, I can’t read, or think or concentrate and I forget stuff. I reckon doing memory homework games that use the logic and language centers of the brain works by keeping those neurological pathways refreshed and in practice.

Talk Out Loud For Memory

I also talk out loud to aid my memory, often in the form of a list. Never mind what people may think of me. Before I get up from bed, I say out loud the list of things I intend to do while I am up. I also say ‘Ow!’ often, and if I feel pain, I name where it is out loud. I then name out loud what digression from my plan may be responsible for that pain, e.g., ‘Don’t Twist !’ or ‘ Mind your rotator cuff!’ or ‘What did I eat? ….that cheddar cheese maybe.’ Not only do I have long term ME, but also the degeneration and pain that comes with old age. I cannot be bothered writing down pain occurrences and levels, as some doctors recommend, and even less would I be bothered to read it!. This method of naming out loud as pain happens works for me.

“Fresh Care” Minyak Angin For Bone Ache

I have relatives from Indonesia and they introduced me to, and keep me supplied with, a roll-on oil called Fresh Care Minyak Angin. It literally banishes bone aches completely. What a boon this is. Be careful with it, it heats the skin, use it sparingly and do not ingest it nor burn sensitive skin with it, and keep the treated area contained by clothing till you wash it off. Minyak means oil. Angin means wind. Masuk Angin (literally ‘Enter Wind’) is an Indonesian diagnosis of many common physical complaints. It is similar to Tiger Balm but different. There is also a version of Fresh Care with cajuput oil in it, but I feel no need to try it.

I have probably forgotten some other good advice I meant to add. I will say that I made most of my improvements after I realised that ever since I got ME my life was on hold, and I had only been waiting to get better. Once I accepted that I might never get better, I stopped waiting to get my life back, and made lemonade with my lemons.