26 years before I got help

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First indications were in 1989 when I had an extreme fever and couldn't sit up for more than 10 seconds w/o a rocket to the brain. The on again/off again nature allowed me to keep working for awhile, but the progressive nature of the disease forced me to 'retire' in 1998. By 2001, I had lost my family, my career, my house and my self-worth. I went to more than 30 doctors before I stopped complaining to my GP. For years, I read compulsively on the complexities of brain chemistry before finally taking the Lightning Process in 2009. While it did not work for me the way they claimed, it was the first tool I had to help myself. But I began to wonder why it helped at all and formed a theory. 

I believe our brains are stuck in a protective mode where the brain (& consequently everything else) falsely believes it is under attack. Whatever the basis for ME/CFS is, it keeps us riding a fence of poor health. and it takes almost nothing to push us off to the sickness side. Whenever it feels attacked, it screams at you to pay attention! Pain travels at 2 speeds thru your body - one like if you cut yourself, and one like aches. We feel the aches daily, but easily slide to the former (like a cut), so any small attack is blown way out of proportion to ensure we are paying attention to this 'life threat'. If we try to push through, the brain begins shutting down non-essential systems, like sleep and digestion.

The part of our brain most effected is also the earliest part of the brain, dealing primarily with functions you don't conciously control (autonomic). The Hypothalamus Pituitary Adrenaline Axis (HPA) is messed up and can kick out way too many hormones. Nearly on top of it is the Endocrine system that sits like a horseshoe around the HPA Axis. As I undertand it, our cortisol can get way out of whack. It's something the body naturally produces 24/7 and is like a pre-cursor to adrenaline (among many other things). If it kicks in our adrenaline, it's already too late, hence the compulsive need for pacing. And by the time you have your cortisol checked, it's back in the 'normal' range.

Obviously, I am over-simplifying a complex response, but the idea is that the brain will over-respond to all 'threats', be they a cut, loud noise, bright light, med, or dealing with a jerk. More emotion means more cortisol messing things up. This can cause the body's adrenaline sacs to always be empty, but puts the brain's protective systems on hyper-alert. So, even though your body is exhausted, your brain is in hyper-protect mode. Sleep, digestion and systems not needed for running from a sabretooth tiger get shut down. The brain is spinning and can't sleep, though you are super-exhausted. 

So, the body can be shot, but the mind spinning. Exhausted body/hyperactive brain. You can also go the opposite way, where your body doesn't feel too bad, but the brain fog is overwhelming. OK body but brain-dead. But when I find it the worst is when dealing with emotions. They will kick in both the brain fog and body exhaustion at the drop of a hat. I believe this is why it's so hard to deal with loved ones who don't understand. If your brain perceives they are a 'threat', your fight or flight will kick in super-easy, leaving you a mess. It's why the ME/CFS people tell you to lose people who are unsupportive. They are going to constantly trigger you sub-conciously. 

For me, the best thing I can do for myself is to remain calm at all costs. It's nearly impossible, but if you are aware of the brain chemistry, you want to keep the cortisol production to a minimum. The Light Study in Utah showed how our protective systems stay in 'fight or flight' for days, whereas with normal people, it recedes in 10 - 20 minutes. Your autonomic brain deals with things without your awareness, so be more aware of what your sub-concious brain is up to. Cortisol is also the carrier of negative emotions, so when emotional you're going to be sick and vice versa. Anxiety, worry, anger, frustration, disgust are some of those negative emptions that can be affected.

So, what can we do about it? Stay calm. Lose the people keeping you 'under threat'. And though it may sound ridiculous, by conciously telling your brain that you are not, in fact, under threat, symptoms can ease.  Stop worrying. Does that mean we can think our way out of this illness. NO! But we can have an affect on reducing symptoms. Be aware of what your sub-conscious is up to.

After 26 years of illness, last year I finally got into the Complex Chronic Diseases Program in Vancouver (23 months on waitlist). In the years prior to seeing them, I had never seen a doctor qualified in our disease. EVERYONE at this program was, and it was multi-disciplinary with doctors, nurses, social workers, physiotherapists, dieticians, and even naturopaths all specialized in ME/CFS. I can't tell you how wonderul that was. The dietician informed me that we have a mal-absorption of certain chemical chains in sugars. It's not an allergy, and not even a hyper-sensitivity. The sugars don't get digested & stay in our guts and actually ferment. Lactose is one of those sugars, so dairy can cause us problems too, but we can get away with it sometimes if our other sugars are low. All of the IBS and smelly slurries in the toilet bowl relate to that. Look up FODMAPs diet. (The 'F' stands for Fermenting).

And finally, I want to stress that we are NOT making ourselves sick. We can't think ourselves healthy. But we can improve the over-response of our 'fight or flight'. Researchers already know that ME/CFS is NOT a psychological syndrome, but a physical, neurological disease. I believe there will be something major finally found that is keeping us very ill. It's why our 'fight or flight' is always on the edge of the fence like I mentioned earlier. A feather will push os over. Whether it is a virus, retrovirus, or whatever keeping us sick, we just can't handle anything extra.

My personal theory is that something like 'Round-Up' will be at fault. It's Monsanto's insecticide that messes with the bug's mitochondrial DNA. ME/CFS sufferers' mitochondrial DNA is messed up too. Round-Up is now used on 96% of the world's crops, and was introduced 4 years before the Incline Village outbreak, which many consider the start of our 'emerging illness'. It may also be killing off the bees, but could be a factor to us 'canaries in a coal mine'. But until the root cause of our illness is found, we can help ourselves by pacing, and keeping the hyper-activity of our 'fight or flight' minimized. In every case of a crash in the past 8 years, I have looked back and seen what the brain perceived as a 'threat'. Our body's response to it is ridiculous.

The people at the Complex Chronic Disease Program were awesome and helped me a lot, but were also very interested in my theory. In my first appointment they had 2 doctors and they kept me there 2 hours discussing my idea. Two hours at my first appointment! And it took almost the entire 2 hours to go over 26 years of symptoms. When I finally finished telling them my theory, one of the doctors said. "I'm in the process of writing a paper on that now."

Look up Central Sensitivity Syndrome.