Energy Crisis

Feb. 8, 2015

The Friend who prompted me to start writing this journal inspired me with a positive way of viewing disappointments: “When something goes wrong in your life, just yell, ‘Plot twist!’ and move on.” Excellent advice for people who have normal energy stores. What I’ve come to learn, though, is that Plot Twists take a lot more energy than I ever realized. No one thinks about how much energy each daily activity takes until the energy tank is on empty.

When I try to explain to people that I’m not up to doing something, that I can’t do anything late in the day, or that I can’t do anything physically or intellectually strenuous, they either think I’m making excuses or they just don't get that I can't do those things.

I think of it like this: I wake up each morning with a small pocketful of coins; most other people I know start out with a wagonload of coins. When you have more coins than you’ll ever use in a day, you don’t realize how much you spend on every little thing like showering, drying your hair, dressing, fixing breakfast and cleaning up your dishes. Every step, every movement, even every thought process costs a coin or two. When the coins are gone, they’re gone. That’s it. The bank is empty until tomorrow. If you don’t sleep well, you wake up with even fewer coins. When you know you have only a few coins to spend, you plan and budget very carefully. You try to minimize steps and economize all your movements; you have a meltdown when you drop or spill something because you know cleaning up the mess will use up precious coins. Pain is very expensive, so you avoid things that cause it at all costs – for me, that's sitting or standing or doing anything for very long, as well as physical exertion, which results in muscle aches.

Aside from other energy-destitute people, few understand why something as routine as fixing a meal is such an ordeal for me. I don’t like food prep and cooking to begin with, so that’s a coin right off the bat. But consider the process, then imagine doing it after having run a marathon:

1. Coming up with a meal idea in the first place - not one dish, a meal
2. Making a shopping list
3. Going shopping, and in my case, sometimes having to hunt for Paleo ingredients – add Candida diet restrictions, and shopping becomes an exhausting proposition
4. Finding a parking space close to the door is a priority, not because I’m lazy, but because I desperately need the energy for the actual shopping
5. Hauling said groceries to the car – even more of a chore if I haven’t nabbed that coveted parking space near the door
6. Driving home – read: navigating traffic and staying alert while operating heavy machinery
7. Hauling said groceries into the house, where they sit on the counter while I drop into a recliner to regroup for a while; then I dig out a few more coins to bribe my brain into doing the puzzle that is moving food in and out of the fridge and pantry
8. Getting out ingredients, pots, bowls, utensils, then measuring and mixing everything – always frustrating because my mind has a hard time sorting and keeping things straight. I have never in my life been able to memorize a recipe or even figure out from experience how to put a dish together.
9. Cleaning up the mess
10. Starting all over again in about three hours (minus the shopping, unless I’ve forgotten an ingredient or two)

Meal prep costs me almost all of my day’s coins, which is why I don’t make lunch, why dinner is the worst part of my day, and why make-and-freeze prep for several meals at a time is a great time-saving solution for those with wagonloads of coins, but for me it simply isn’t possible.

And that’s just meals! Laundry is a coin or two, cleaning a bathroom is about five coins, having to deal with an insurance claim is a good 10 coins, and doing even small household repairs take a few coins; if they start to pile up, just thinking about tackling them can empty the pocket. Even fun things like going to visit a grandchild or a friend use up almost a day’s worth, so you don’t plan anything else for days with costly activities. 

A Plot Twist uses up a lot of coins because you have to figure out how to reroute (brain processing is often more costly than physical movement) and then physically carry out Plan B. Multiple Plot Twists in one day can easily use up all your change and land you in bed, or in a crying heap on the floor. 

It’s hard for energy-rich people to comprehend what it feels like when you run out. The closest comparison to which most people can relate is having the flu – the aching joints, the weakness and inability to move much less get out of bed. But as the term implies, Chronic Fatigue never ends. So you constantly budget your energy with as much miserly care as the financially poor budget their money, reluctant to spend on anything unnecessary. But there is no energy overdraft protection. If you’re in the middle of something when it happens, you have to try to keep going on fumes, but it’s not very pretty, and you can’t do it for long. You suddenly get irritable and irrational because your brain won’t work, you drop things and bump into things because your sense of space is off kilter. You feel like you’re melting into the ground, and “melting” is an apt metaphor, because you’ll be acting like the Wicked Witch of the North; at this point, you are quite literally shutting down. 

If functioning without energy and brainpower isn't maddening enough, you are misunderstood by strangers and friends alike. They think you're a grouch (and you are but you don't want to be), that you're lazy, that you're a hypochondriac. They begin to avoid you because within moments you can swing from feeling OK and being nice to crashing and acting irrational, snippy and even mean. But no one would know you're crashing because you look fine.  Even your friends stop calling because after you decline social invitations several times, they think you can't ever go play, or they decide you're no fun. 

I've been writing this post for several days; ironically, today Chronic Fatigue Syndrome is all over the news with the release of a year-long report. Get this:

The National Institute of Medicine on Tuesday declared chronic fatigue a legitimate disease that plagues "millions of Americans." It was also given the new name of systemic exertion intolerance disease.

I’m so relieved to know that what I’ve described in this post is now legitimate. And that giving it a different name will make it all better. 

But this is a gratitude journal, so I'm grateful if a respected institution is able to convince mainstream doctors to listen to patients who complain of debilitating fatigue and perhaps learn how to help them. I will be even more grateful if the medical community recognizes that drugs don't cure everything and if they open their minds to alternative treatments like diet, supplements and mind-body practices like Tai Chi.

Renewed Hope

Oct. 29, 2014

Back to Fibro doc today after four months. At my previous appointment, he seemed to be throwing up his hands - beyond testing and possible treatment for Lyme Disease and heavy metal testing/chelation, he had little else to offer me. I truly don't believe I have Lyme Disease, and I'm not willing to do antibiotic treatment even if I had Lyme; besides, Doc doesn't know of anyone in the area who treats Lyme anyway, so I see no point in testing. I'm not really on board for heavy metal testing and chelation the way Doc does it, either - I've read too much that says chelating agents don't have a strong enough bond to the metals to hold onto them all the way out of the system. The metals get pulled out of tissue, but when the bond breaks, a lot of metal ends up getting redistributed throughout the body, often in places it wasn't in before. Dentist says it's counterproductive to do chelation before all the mercury is out of my mouth, and since I don't feel good about doing chelation at this point anyway, I believe it's actually been a blessing that I haven't been able to chew without pain on the teeth that have had amalgams removed and/or crowns placed. Dentist says it can take up to a year for those teeth to calm down, which buys me some time before Doc begins pushing the chelation. I'm hoping that Tai Chi, diet and supplements together will improve my immune system enough that after the amalgams are completely gone it can handle any remaining metals without chelation therapy.

Doc began the appointment by asking me to tell him what's going on; he had a list of questions but wanted to hear from me first. I told him about starting Tai Chi in August and that it's been amazing; at the same time I began writing this gratitude journal, and hand-in-hand they have given me a new outlook. I told him why I started writing this - because of the epiphany that Freddie doesn't define me along with a personal need to write again - and related to him the positive effect: looking for blessings every day makes me aware that there really is much more to my life than Fibromyalgia, and that overall my life is very good. Not surprisingly, but still miraculous, I have felt better. He nodded knowingly. He told me at my last appointment, when I felt defeated and showed it, of a patient who just didn't respond to any treatments (one of those 10 percent, of which club I appeared to be a sad new member) and how she reported to him some time after he released her that she turned her life over to God. She accepted her condition and His will, and once she did that, she began to feel better. He urged me to do that, which I had tried many times to do. The gratitude journal - along with the meditative essence of Tai Chi - seemed to be the key to peace for me.

How grateful I am to have been led to a physician who recognizes that any medical intervention is only a complement to spirituality in promoting physical health. At every appointment, he has asked me, "Are you good with God?" or "How are you with God?" I am a spiritual person; my religion is my life. Yet somehow I could never find healing through prayer and faith alone; for whatever reason, I needed a physician to combine medical knowledge with spirituality, and perhaps now just happened to be the time for the two to come together. He told me today that he's not one to tell a patient he can fix this or that or to give false hope (yes, I saw that in my last two appointments!), but that he could tell me today he really believes I will get well. It won't be a revelation, "Hey! I'm healed!" but will be a gradual process. 

So, the technicalities of today's appointment: Doc says for me, the diagnosis "Fibromyalgia" really means mitochondrial dysfunction, as fatigue remains the primary, persistent issue. 

1. First, we need to address sleep, which was pretty good until our vacation approached and my mind raced with preparations. Then on vacation, sleeping in different beds with uncomfortable pillows, coupled with my propensity to overthink details of each day's adventures kept me half-awake every night. If I don't get back into better sleep in the next few weeks, he wants to consider a low-dose pharmacological combination to promote restorative sleep. A body cannot heal without restorative sleep!
2. He has learned even more about glutathione and methylation cycle since our last appointment, and he feels that I can triple my ALA dose to 600 mg twice a day. 
3. He ordered bloodwork to look at DHEA-S, Ferritin, and comprehensive metabolic panel to evaluate how the liver and kidney are functioning. He also wanted a specialized test for glutathione that had to be done in his office, so I did it while there today (three attempts by two nurses to find a vein ... aargh, the reason IV therapies are not a good option for me!) If glutathione is low, he will supplement, hopefully with liposomal cream, nasal spray or other non-intravenous carrier. 
4. Cortisol levels are OK - not great, but no longer at crashing level. I stopped taking cortisol about two months ago and went back on AdrenoChelate; I haven't noticed crashes, but Doc says the formula is weak and recommended Adrenal Stress-End by Integrative Therapeutics instead. 
5. No more Candida therapy! Even though Doc says this, I know too well how sugar and processed foods make me feel, so I will continue with a clean diet.
6. He gave me deep breathing exercises to do, which I did in the past, probably with Fibro Doc #1. Deep, abdominal breathing is inherent in Tai Chi, which I do at least once a day, but Doc's exercises are a good reminder. They're great because they can be done while driving (when I most need relaxation) or standing in line (the second-most common source of nervous stress) or at any time/place. I've actually had people in public places ask me if I'm OK when I start breathing deeply at the onset of stress. I'm sure I look like a head case about to pass out when I do that, but if people only knew how effective a few deep breaths is for centering and calming oneself!

And now it's time for bed, so I'll apply some progesterone cream and lavender oil, do my mind-calming Tai Chi memory exercises, and hope for pleasant dreams. I go to the retina specialist in the morning, though, so my mind will likely be anticipating that all night. For heaven's sake!

Get Hip

Oct. 4, 2014

Just when I was feeling quite good, and right in the throes of getting ready to go on an extended vacation, I felt a giant twinge in my hip a couple of days ago when I stretched to one side. My hip went into spasms and gave out on me when I tried to walk or otherwise move my hips. I found out quickly that we use our hips for almost everything - getting up from a seated position, turning over in bed, bending over, walking, balancing, and I found out the hips and back are very much involved in coughing and sneezing!  Every muscle movement made my hip scream, and the more I tried to hold myself up – or move without making it flare – the more all my muscles tensed until my neck and shoulders were stiff and aching, too. It got worse each day, probably because more parts of my body were cramped up in reaction to the hip pain. It was a bit better first thing in the morning, but the longer I was up, especially standing, the tighter and more painful it got. The only thing I can think of that I did differently was adding short jogging intervals to my morning walks this week. Guess this body isn’t putting up with any kind of pounding!

I have so many errands to run, so many things to take care of before we leave, and food to prepare because there’s no telling where or if we’ll be able to find things I can eat on the road – no sugar, no processed food, no dairy, no grains, no almonds, only organic meat, and on and on.  So all this considered, it’s no surprise that the gifts from Heaven I especially appreciated the last few days are these:

• Parking spaces close to the door at every store I went to on my errand-running the first day this happened (when I could still walk and drive, albeit with difficulty). Seriously, when do you find the spot nearest the door at each and every stop??? I always do a victory punch when I find a prime parking space (and am equally put out when I don’t!), but these last few days it was quite literally a Godsend.
• The hip miraculously loosened up this afternoon! The temperature was so cool this morning (delightful cool front last night!) I decided an easy walk around the block might stretch and loosen my hips. As I walked, I breathed in the cool air, a la Tai Chi practice. I imagined breathing energy in and focused the energy in the tight hip. As I breathed out, I imagined pain, tightness, stress and anxiety leaving. This afternoon I was able to do some cleaning-out in the pantry (Lighten Up!), and I was surprised to find myself bending over, lifting and moving cans and boxes with almost no pain. I couldn’t pick up or move anything yesterday or even this morning. I’ve been a believer in Tai Chi since day 1, but just this week Sifu introduced us to doing the moves with a focus on energy. I’ll write a post soon about the new layers of Tai Chi we’re learning about, but today’s experience was a definite Smile – and I’m grateful again to have found Tai Chi, the instructor we have, and a class that is so close by so we actually go regularly. Don't get me wrong - Tai Chi is not my new religion. I do believe in actual healings, but I believe it can be more instructional for us when, after searching and pleading for help and relief, God leads us to a practitioner or therapy or treatment that allows us to participate in our healing. Namaste!

Digest this ...

Aug. 19, 2014

We're quickly discovering that to learn Tai Chi is to learn intimately how the body works and moves, including how to eat and live. Every move - every hand and foot position in relation to other body parts - creates balance and strength. Sifu D is patient enough to show us how slightly moving a foot or hand increases stability, or how moving from the hips moves the rest of the body without excess effort. He takes each person's individual condition into consideration as he prepares a class and incorporates acupressure points or moves that will help each person. I was getting dizzy when bending down from the hips and then raising hands overhead; he gave me alternative moves that don't drop the head below the knees and also showed me some acupressure points and other moves that help normalize blood pressure. We visited after class about a friend I told about the class who said he planned to come to today's seated class. As we talked about my friend's health issues, the conversation turned to diet, particularly acid/pH balance. I know all about acidosis and have been working to raise my pH for some time. My current fibro doctor finally said to forget about the pH until we get Candida and mercury toxicity under control. Sifu wasn't very familiar with Candida and said he would ask his Master for some direction. 

As soon as we got to class this morning, Sifu had some info from his Master about acupressure points for low BP and diet suggestions, particularly combining foods. I've heard of it, but I couldn't remember what it is. Basically, it's not combining foods that have different digestive requirements. Proteins require intense amounts of acid to break down, while starches require an alkaline digestive medium.  The theory is that when starches and proteins are eaten together, the acid and alkaline neutralize each other, and the food passes into the body undigested. Fruit is mechanically digested in the stomach, but chemical digestion doesn't take place until it reaches the last stages of the small intestine, so if eaten with or after a meal, it sits on top of the other undigested food and starts to rot, as it's not being digested. All of that causes bloating and gas and an unhealthy digestive tract. Sifu said that people with a healthy digestive system don't have to worry as much about combining foods, but anyone with a lot of gas, bloating, and known digestive issues (including Candida) can benefit from combining foods.

I came home from class and do what I do: Google and read. I looked up "Combining Foods" and the most coherent, sensible article I found was Mercola.com. I've read all kinds of excoriating articles about Dr. Joseph Mercola - the usual quackwatch stuff. But every time I search an alternative-medicine topic, I wind up at his site and find information that doesn't sound fringe or weird at all. Since the Candida Diet hasn't done much for me, nor have antifungal drugs, I've been doing some things to improve gut health, namely adding some resistant starch and beefier probiotics. I'll give food combining a go and see how I feel.

Today's smile: 

 
A thank-you note handwritten by Grandson #1, all 5 years of him. He has a good Mommy teaching him to do such things :-)

Energy and calm

Aug. 2, 2014

Before pain and fatigue sidelined me, I was a writer and photographer. The brain fog took away words and my ability to organize and stay on task. The fatigue and pain stole the ability to accomplish physical and mental tasks, and feelings of self worth vanished. Consequently, I alternated between feeling hopeful and defeated.

I went back to college in my late 30s, before the onset of my health problems, although I believe it all really started there with the stress of my own unrealistic expectation to be the best at everything I did. A dear professor and mentor literally wouldn’t let me quit my journalism degree when the going got tough. Several years after graduation, when my health declined until I had to quit writing altogether, she reminded me that nothing is lost on a writer: “Why don’t you write about your experience?”

I tried once. Or twice. It was just too hard, trying to sort through why and how I got to be this way, and trying to chronicle all the doctors I’ve seen and treatments I’ve tried. Worst of all, trying to find words was an exercise in frustration that reminded me all too painfully of what I had lost.

I’m on my third fibro doctor, I’ve completed six months of an impossibly restrictive diet, I take handfuls of supplements three to five times a day, and I avoid toxins and chemicals, including fluoride and artificial sweeteners. I’ve explored Candidiasis, heavy metal toxicity, Lyme Disease, CNS malfunction and psychological factors. Today I am back to the first thing I read as I began trying to learn about fibromyalgia: that almost all of us sufferers are perfectionists who push ourselves to the limit and who stress or worry about nearly everything. To remedy that, I’ve tried Emotional Freedom Technique (tapping the body’s meridian points), acupressure, acupuncture, yoga, and meditation, although I’ve never mastered meditation on my own. In my gut I’ve always known that to get better, I would have to figure out how to calm my mind, relax my body and get over having to be perfect, but I’ve not realized success with any of these.

Monday I found Tai Chi. I’ve heard repeatedly that Tai Chi is one of the best things for Fibro. During the first class, it was perfectly clear why. It is meditation. You can’t think about anything else but doing the movements, which are fluid, graceful and ultimately relaxing. They are so slow they deceivingly require muscle control and strength, and when done with correct form, provide gentle but powerful stretching.

This week I’ve had energy that I haven’t felt in years. It could be attributed to a number of new things I started since we got home from vacation two weeks ago:

·      I began taking DHEA 10 mg (lab tests done before vacation showed I was low)

·      I began drinking 10-20 oz. of alkalized water a day (via Juuva’s Energy Cup)

·      To reduce electromagnetic field exposure, I stopped talking with my cell or cordless phone to my head; unplugged all electrical gadgets in my bedroom while I sleep and when not in use; and don’t use my laptop on my lap.

·      A "cold" front dropped temps all week to the 70s and 80s (heat wilts me!)

·      I spent time with a friend who inspired me to be constantly aware of negative thoughts and replace them with happy, lighter ones. This goes hand-in-hand with a book I started reading before vacation, Feeling Good: The New Mood Therapy by David D., Burns, M.D. in which the author cites studies showing that positive thoughts literally change brain chemistry.

Today’s smile(s) came first thing in the morning as husby and I were walking in the neighborhood. Coming toward us was a woman totally unaware that anyone else was out and about, humming out loud – no earphones, just her own song. A few moments later, someone behind us called out a greeting. Most times when we walk, it’s hard to get anyone we encounter to even nod hello, even when we’re close enough to brush their arm. As he passed us, we saw that he was riding a bike and pulling a baby in a bike trailer, and he called, “Rides just $5!” I’m thankful for God’s little smile early this morning in not one, but two manifestations!

And this week, I’m thankful for energy and a mind clear enough to write. It feels good, and it seems right to start a gratitude diary. If next week turns bad again, I’ll have this week to remember until another good day comes!