Archive for September, 2007

h1

CFS, The beginning

September 29, 2007

Most people think that people with Chronic Fatigue Syndrome, (CFS) are lazy or ‘mental’. Even my own family doesn’t understand what happened to me. I’ve always been overweight. For the most part, in this society fat people are automatically considered lazy. My personality isn’t lazy, never has been. I used to have the most perfect clean house, a perfectly balanced checkbook, a completely organized life. My life used to be a ritualized balance of working, cooking, cleaning, organizing, exercising and recreating. I used to be proud of my linen closet – all the towels and sheets color coded and prioritized into my ‘favorites’. Same routine with my desk drawers, my kitchen cabinets, my clothing drawers. That life for me disappeared ages ago.

I was studying a the University of Wisconsin, Madison, Wisconsin. I was 33, and it thrilled every pore of me to have been accepted to the University and to be studying Landscape Architecture – I had a beautiful future. I had gone to the gynecologist and she prescribed birth control pills to lessen hair growth under my chin. This hair growth seemed at the time to be the biggest problem in my life. I was fine for about 6 months, but then a huge unreasonable depression set in. I attribute that depression and subsequent asthma, to a side effect of the birth control pills. 

I had no reason in the world to be depressed. I had everything a fairy tale life could include – new house, new car, excellent marriage, good health, I was thin, and my ultimate dream of a university education. But the depression was relentless, a morbid brain sickness that had me constantly inventing new ways of killing myself in exaggerated Rube Goldberg type mechanisms. I imagined patenting a ’21-gun Salute’ hat – a Mexican sombrero with 21 rifles marvelously cantilevered in circumference around the brim, with one old fashioned water closet pull chain to launch the full suicidal assault. I sought counseling, my counselor said one significant thing to me: “Carrie, you’re stronger than this.” It’s true, I was, I am. After a year, the depression ceased and I thought life would continue as it was.

While I was suffering from depression, I never stopped exercising. Making my body submit to my will felt good. I have always enjoyed swimming and after the depression left me, I decided that I’d like to compete in mini-triathlons. A mini-triathlon is a 400 meter swim, combined with a 2K run and a 6K bike ride. My spirit still soars at the thought of it. I wasn’t training to win, I just wanted to complete this goal as a huge badge of personal pride. ( I wanted that t-shirt!) I trained every day, sneaking into the university pool between classes, jogging after classes, continuing my training near my house at the YMCA and the jogging track. At my best, I was swimming a 42 minute mile and then jogging 2 miles a day combined.

swimming

Then it seemed as if in an instant, I couldn’t climb a half flight of stairs. I remember having had a cold and it felt like it never left me. I suddenly developed severe asthma symptoms, I had difficulty walking small distances without taking a rest. At the University, I didn’t have enough time between classes to make it from one end of the campus to the other, and was constantly late or would miss the class entirely. Then it got worse – the next semester I barely made it to class at all. I was literally crawling through my home, since it took less energy than walking. I needed to sleep constantly, at one point, I remember needing to take a nap while I was putting on my undies. I slept on the floor in front of my dresser with my undies around my knees. Going to the grocery store, which was across the street, was an impossible task. I would take tiny steps, like you see old people do, shuffling ever so slightly toward my destination. Every day I had a low grade fever. I thought everything that was wrong with me was a symptom of asthma, and while I saw a doctor for asthma medications, I didn’t think more about it.

 

I ended up taking a series of ‘incompletes’ on my coursework, and I did pass all of those classes that semester. After about 3 months, most of the overwhelming fatigue left me, and I was able to struggle through to my graduation. I was thrilled when I was accepted as an associate with a prestigious landscape architecture firm. I worked with him for several years and loved being a productive landscape architect. Soon again, I developed another cold, and just as suddenly, I was back to the unending fatigue. I had great difficulty climbing the stairs to the office, having to allow an extra 5 minutes to my morning schedule just to get up there. I would come home from work exceptionally exhausted, walking through the door, setting down my keys and often with my coat still on, falling asleep immediately. I kept taking sick days, unable to get dressed, and eventually lost my job.

 

It was at this point, that I did some research on the net and found that I suffered from Chronic Fatigue Syndrome. It was 1997, and CFS was a ‘new disorder’ and barely understood. There was no known treatment. At the time, my sister kept complaining about this thing called Fibromyalgia – she hurt all over, I thought she was ‘mental’.

 

I felt stuck, quagmired, stricken, and I had no energy to find relief especially when the net was suggesting that there was no cure. I languished for years upon years. My search for medical treatment is detailed in the next chapter.

fatigue

 

 


Feel free to see my other worlds:
Coffee World
For the Love of Acid Cigars
Harley Davidson Gifts

Advertisements
h1

Chronic Fatigue Diet – Simplified

September 28, 2007

If you go searching on the net for chronic fatigue syndrome (CFS/ME) diet, you’ll hit on hundreds of sites.  The trouble is, they all seem to be in conflict with each other.  Some are so strict that you wonder if anyone can survive, others are so liberal, even allowing several servings of fruit.  (Oh I know I can’t eat fruit – that is just asking for ill health.)   It’s all too complicated for me to keep lists of foods that I can eat and can’t eat – I have to simplify – let’s face it – my peabrain ain’t that sophisticated.

Pretty much everyone, everywhere will agree that sugar, artificial sweeteners, processed foods and white flour are out.  I agree, bad news for youse.

Nearly ALL of these candida/cfs diets prohibit specific yeast forming foods: mushrooms, products with yeast in them: breads, beer, brewers yeast.  I agree with that.  Most of them also mention condiments: ketchup, mustard, mayo, etc.  I adore mustard, I’m not exactly sure how I’m going to keep myself from indulging – maybe I can open up the jar and sniff it once in awhile.

 Some of these diets allow whole grains, some don’t allow any grains – even the mother of all healthfoods – brown rice.  I get so confused.  I allow myself some rye crisp once in awhile.  ’tain’t gonna kill me.   I took the health food plunge recently and purchased Quinoa pasta – Wholly Crackamoni! I love this stuff!  It’s not a cereal grain per se, it’s something else entirely I guess, and it’s a complete protein and it tastes better than any pasta I’ve ever known. (except this one italian restaurant that used to make their pasta everyday from scratch, but that place closed – sadness. )

Some Quinoa Pastas: (pronounced “keen-wa”) http://www.celiac.com/catalog/index.php?manufacturers_id=15&osCsid=dbb6e9814fea42cc2deee0cf20a8ea29

The whole non-dairy diet is just plain confusing.  Again, some of these sites disallow any dairy product, others will encourage use of cultured dairy products like yogurt, cottage cheese and kefir.  I can’t drink milk or eat yogurt anyway – gastric distress.  But I sure do appreciate some cream in my coffee… Ooops! I ain’t a’supposed to be drinkin coffee either….

All things in moderation – key phrase: “I’m working on it”.  I anticipate that I’ll be weening off all these little “no-no’s” in time.   The one thing that disturbs me about some of the strict diets, is that they say no ‘nightshade’ vegies – translation: no tomatoes.  Are they nuts?  How can a person exist without tomatoes, I ask you? Boy, if it’s necessary, it’ll take me some months for that one to sink in and be implemented.

I get anxious when I see these diets get so nit-picky.  Does a dash of worcestershire sauce really foster a complete rebound of cfs symptoms?  Is a little nip of cream in my no-no coffee going to throw me into complete relapse?  Is it a matter of general diet and detox philosophy or are there proven facts?

When you consider that I’m taking 700 supplements, most of which are designed to kill the nasty nanobytes of invading parasitical species (primarily candida albicans), can’t my body contend with a no-no now & then?  I’m not talkin pizza here, I’m talkin a healthy splat of tabasco in my soup.   I get so confused.  They say no vinegar in one breath, and then in another article, they’ll tell you that honey & vinegar do wonders to change the ph of your blood.  It makes my synapses turn, swirl and whirl like the Cirque Du Soleil on opening night.  So, let’s simplify, shall we?

Vegies

This is what I can eat:   All vegies are good with few exceptions ( sorry to say, corn & potatoes are not  vegies folks).   Limit winter squash, beets and carrots.  Sweet potatoes are probably not a good idea yet.   I can eat any meat, but let’s not get crazy, let’s say one portion of meat per meal (sorry no bbq sauce).  Quinoa is a reasonable addition to some meals.  Some CFS diets allow parmesan cheese and I’m letting me have it too. 🙂  No fruit for me, but I do drink lemon juice – it’s a well known detox agent.  I should note for anyone using this page as a reference, that eggs would certainly be allowed on this list.  ( I can’t eat eggs.)

My diet simplified:  Vegies, meat, quinoa. 

Doesn’t that sound tasty?

*******

So what do I drink?  I drink water, home made lemonade with stevia as a sweetener.  I’m still drinking coffee but I know it’s got to go.  I also drink pau d’arco tea – a south american tree bark that’s known for it’s yeast fighting properties.  It tastes just like tree bark and so, on occasion, I’ll combine it with decaffeinated constant comment tea.  (I’m sure that tea will turn out to be another no-no on someone’s CFS website.)


Feel free to see my other worlds:
Coffee World
For the Love of Acid Cigars
Harley Davidson Gifts

h1

Oxidative Molecular Stress?!?!

September 28, 2007

Recent research has shown clearly that CFS causes a breakdown of the mitochondrial system, thereby reducing ATP production.  ATP is where all the body’s energy is generated.  The biochemistry of CFS and it’s affect on the cell is a little heady to me, but I get the basics.  It can be summed up in one phrase: oxidative molecular stressMy teenyweeny mitochondria are as fatigued as I am! Poor little things. 

At this point, I can imagine my tiny mitochondria, the whole millions or billions of them, each with David Hedison’s Face (The Fly), crying out in unison: “helllllpppp meeeee” .

The Fly

Current research on this topic suggests that various therapies can be directed toward improving mitochondrial function and health.   One of the most promising is NT Factor – a proprietary blend of Lipid Replacement.  Recent studies have shown a reduction of fatigue in CFS patients up to 40%.  I consider it a ‘higher priced’ supplement –  taken as directed, about $50 bucks a month.  But! I’ve only been taking this supplement for four days and I notice immediate cognitive improvement, lessened body aches, and a degree of diminished fatigue.  I’m so enthused!  


Although these studies show that NT Factor can indeed improve mitochondrial function and lessen fatigue, it is not the only answer to CFS.  My research continues, but I now have more energy and for the first time in years upon years, I have hope.

http://www.immunesupport.com/library/bulletinarticle.cfm?ID=5522&PROD=PH195 

Components of NT Factor™ and their proposed functions (modified from ref. 44). NT Factor is a registered trademark of Nutritional Therapeutics, Inc., PO Box 596, Hauppauge NY 11788.  NT Factor is a nutrient complex that is extracted and prepared using a proprietary process. In addition, nutrients, vitamins and probiotic microorganisms are added to the preparation. It contains the following ingredients: Glycophospholipids: polyunsaturated phosphatidylcholine, other polyunsaturated phosphatidyl lipids and glycolipids. Proposed purpose: repair and maintenance of membrane lipids. Probiotics: Bifido bacterium, Lactobacillus acidophilus, and Lactobacillus bacillus in a freeze-dried, microencapsulated form with appropriate growth nutrients. Proposed purpose: supports digestion, gut epithelium and the immune system. Food Supplements,Vitamins, and Growth Medium: bacterial growth factors to support probiotic growth, including defatted rice bran, arginine, beet root fiber extract, blackstrap molasses, glycine, magnesium sulfate, para-amino-benzoate, leek extract, pantethine (bifidus growth factor), taurine, garlic extract, calcium borogluconate, artichoke extract, potassium citrate, calcium sulfate, spirulina, bromelain, natural vitamin E, calcium ascorbate, alpha-lipoic acid, oligosaccharides, vitamin B6, niacinamide, riboflavin, inositol, niacin, calcium pantothenate, thiamin, vitamin B12, folic acid, chromium picolinate. Proposed purpose: antioxidants support lipids from oxidation, growth medium supports probiotics and gut epithelium, vitamins support general health and the immune system, and food supplements support lipids from enzymatic digestion and oxidation.


Feel free to see my other worlds:
Coffee World
For the Love of Acid Cigars
Harley Davidson Gifts

h1

My Chronic Fatigue Symptoms:

September 27, 2007

My primary symptom is fatigue. Constant unending fatigue that is unresolved by sleep or rest. After sleeping for 10 or more hours, I wake tired. There is no sense of needing more sleep, and yet the fatigue lingers. If I am compelled to nap, even after waking from an hour nap, it feels nothing has been resolved. I am incapable of standing upright for more than a few minutes at a time. This makes simple tasks like doing the dishes, showering or folding laundry seem insurmountable. I am much more able to walk than I am to stand. I complete most tasks while sitting. I have great difficulty bending over for any period of time, so doing things like putting the pots & pans away, or grasping anything on the floor requires a rest period after the task is complete. What’s odd about this, is that it seems related to aerobic function. I am very physically strong for a woman and have no difficulty performing tasks that require muscle strength. I am much more capable of moving the couch than I am standing there and talking about it. When I ride my bike, I am well capable of putting the bike in 5th gear and pedaling with superhuman thigh strength and I’m not able at all to spin my legs round & round in 2nd gear like normal people. Weird. Must be an oxygen transport problem.

 

Secondary to the fatigue is sleep dysfunction. I have great difficulty falling asleep, even if the night prior, I had only slept two or three hours. I am frequently awake until 4 or 5am, and my personal belief is that no one should ever sleep past noon. I am constantly wrestling with gaining good quality sleep, even though I actually ‘feel’ the best when I’ve had only 3 or 4 hours of sleep. My feeling is that the yeast growth (candida albicans) require as much sleep as I do, and when I deprive them of sleep they aren’t capable of zapping as much of my energy. The added benefit: I can recite any late-night infomercial by heart.

 

Fibromyalgia: Most days I feel exactly like I’ve been hit by a truck. I hurt all over, I can feel pain in my bones, my muscles, my tendons – everywhere. I am constantly dealing with nagging pains in my shoulder, my back, my joints. I have difficulty sitting in one position for any period of time, constantly shifting to ‘rearrange the pain’. When I am placed in situations where I am confined or have to sit on hard surfaces, the pain after 15 minutes or so, leaves me requiring a full day of rest.

 

Brain Fog: I feel like I’ve lost half of my intelligence. I have difficulty remembering, very often losing my train of thought. I have difficulty speaking – losing words and phrases that I was just about to say. I have difficulty concentrating and I would very much like to have my awesomely creative mind back.

 

 

 

Digestion difficulties: I’m constantly battling both diarrhea and constipation. There seems no in-between. Sugar, fruit, white flour, processed foods all wreak havoc on my system, causing gas, headaches, fatigue, malaise. The oddest things give me debilitating migraine headaches: Popcorn, salad, pizza, burritos, donuts (dang!), beer. Drinking alcohol is out of the question. If I drink the slightest amount, I feel like I have a hangover for the next two or three days.

 

Itching: There must be some association between candida and skin disorders. Wherever I sweat, I itch like crazy. It’s not a matter of hygiene, my sweat itches like banshee just a minute or two out of the shower on a hot day. I’m sure it’s amusing for people that watch this old fat lady constantly bending over and scratching the back of her knees when I’m walking down the street in July. For 9 months out of the year, I am plagued by incessant dry skin itching that moves in patches all over my body. My legs are terror zones – disturbing my sleep with itching that intensifies when scratched, itching unabated by any over the counter cream except anbesol. From September to May, every night I feel I might go insane from this insidious onslaught.

 

Other than that – I feel just fine!


Feel free to see my other worlds:
Coffee World
For the Love of Acid Cigars
Harley Davidson Gifts

h1

The Process:

September 27, 2007

bubblesIn order to achieve a greater sense of well-being and productivity, I am instituting a strategic protocol to thwart and ultimately overcome my battle with Chronic Fatigue Syndrome. Chronic Fatigue Syndrome (CFS), is a difficult adversary, causing untold havoc, rendering me unable to work, exercise or recreate. Moreover, I have great difficulty with the simplest of tasks – getting dressed, showering, basic housekeeping. There are times when I am able to complete what seems to me to be a strenuous task or circumstance – going to a party, doing several loads of laundry, shopping, housecleaning, but these instances are rare and come with a price. Typically, the day after a strenuous task is a rest day – requiring more sleep and limited mobility.

 

Where to begin? After extensive research, it is clear that an offensive must be launched on several fronts at once. Several factors contribute to my cfs symptoms list. Key roles are played by: Diet, Mitochondrial Function, Digestion, Liver function, Exercise, Sleep, Stress Reduction.

Welcome to my bloggyland 🙂  I hope to continue journaling my progress, my failings, and in-between allow various written expressions to permeate this lonesome landscape. 

h1

Notlob

September 27, 2007

raining

Fantastically amorphous, how shall I convey the delight of my heart?  Begin at the beginning, I always say.  Bring on the rain 🙂