Archive for the ‘Insidious Debilitation’ Category

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Chronic Fatigue versus Christmas: I’m Dreaming, I know…

December 12, 2008

christmaswindowA heartwarming fire in the fireplace, even a fake one would do. The scent of fresh pine boughs conjuring up memories of Christmas Past, coupled with the blossoms of sugar cookies in the oven that I’ll soon fashion with sparkling sugar flakes. Sharing a cup of Christmas Cheer while gazing at a brightly glowing tree all ashimmer with tinsel and colored lights. It’s a wonderful dream, these tangible elements of a romantic Yuletide, and one that most of my friends and family are able to create. But Chronic Fatigue and Christmas don’t mix and for me at least, even to admit that to my family and friends, is wholly embarrassing.

There’s no decorating: I’d love to bring my house into the land of the living with vibrant displays of ornaments, garlands and snowy character scenes. But I’m not even capable of bringing down the Christmas box from the top shelf in the closet. Then to imagine creating bits of flair around my livingroom sounds like it’s beyond anyone’s energy reserves. Nor can I imagine myself decorating a pretty tree (how would that get into my house?). That activity represents a long term standing session coupled with daunting strains of bending, reaching, squirming. I suppose I could manifest the energy, but for me as always, there is an energy cost analysis of where to best spend my daily outlay.

Does my family understand? No, I’m sure they think that I’m lazy, or lack Christmas Spirit, or that I’m too self absorbed. I’m so fortunate that my husband doesn’t care and doesn’t even mention it. Then too, I can well imagine that this is a source of difficulty for families everywhere, in houses where the would-be decorator suffers from CFS.

There’s no Shopping: I imagine wrangling with coats, mittens and then mangling through slippery traffic in the winter wonderland. Bustling then through parking lots, shops, and cashier queues to gleefully find the perfect representation of my love to offer. This too is a complete impossibility. If I love you truly, you’re all getting the same imported cookies that are the one undiscovered secret of my local grocery. I’m so happy to be able to simply visit my grocer and manage that task without contemplating a mobile grocery cart. If I love you more than truly, I’ll be able to burn a CD of my favorite music for you, because here at my computer, I can sit and create with ease. If I hadn’t lost my job, I would certainly take advantage of shopping online. But as everyone can acknowledge, lately this is much too weighty on the pocketbook.

There’s no wrapping: To any normal person, doesn’t this sound like the most simple of tasks? For the CFS person, this little ditty can become a rigorous onslaught of terror. Where do the pretty papers, ribbons and bows come from? Where on earth did those sticker gift tags run off to? I suppose it can be managed, but when combined with the other stresses of the season and the dedication of time and attention to the matter, this task represents yet another CFS hill to climb. If I put a sticky bow on your untagged box of cookies, will you love me just the same?

Feast without Expectation: I will do my very best to create the perfect Christmas Dinner. Fortunately in my house that allows for a roast chicken rather than turkey. My energy does afford the ability to stock the household with festive feastings and I’m quite able to manage cooking a lovely glazed spread of delights. But for many I know, this too is another holiday expression of love that falls to the wayside. At the very least, this is one area where local restaurants or caterers can assist those that are still struggling.

Dreaming of a Splendid White Christmas: As one given to outrageous fantasy, I dream of days of shooshing on the ski slopes of Telluride and then exchanging romantic gifts with hubby in our suite during our fabulous red-cheeked Colorado Christmas. Or I still envision sculpting christmas bears and bunnies on our front lawn and stringing them up with lights for nighttime neighborhood display. My mind still yearns to be dressed to the hilt in red velvet or satin and share drinks and flirtations at hubby’s company christmas party. All in a dream, my friend.

The Spirit of Christmas Still Lives: Your chronic fatigued spouse, mom or dad, family or friend still loves you just the same. Even if we fail to meet your holiday expectations, even if we fail miserably in expressing our love and heartfelt Christmas greetings, even if we’re entirely incapable of sharing in the fun, please know that we want to show our love and we’re all trying the very best that we can.


Visit my latest toy pages: Ice Age 3 Dawn of the Dinosaurs , Terminator Salvation Toys and Transformers Revenge of the Fallen Toys

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Chronic Fatigue Syndrome – You’re Not Alone

March 19, 2008

No Brainer 

I’m living proof that your CFS  Chronic Fatigue Syndrome can improve!  How did I get here after suffering for so very long?  In this article I’ll show you briefly where I’ve been and how I’ve improved to the point of being able to get dressed and being able exercize and live again.   First and foremost, it’s important to realize that even though you probably can’t get out of your house – you’re not alone.

You’re not alone in not being mobile or active, and you’re also not alone when you’re searching for advice, research and community.  Having Chronic Fatigue Syndrome can be devastating to your life and emotional health; we all need to take advantage of the resources at our fingertips.  The Chronic Fatigue Treatments Forum is one of the sites that I’ve used for outstanding and varied treatment information as well as a community of common sufferers that offer the support you’re looking for.

This CFS forum details several Chronic Fatigue Protocols: Amy Yasko, Garth Nicholson, Marshall Protocol, the leaders in cfs research, and more importantly proven results.   In addition, Jacob Teitelbaum’s clinical trials are covered in another area , which features a discussion on D-Ribose, a supplement that I can personally attest has done absolute wonders for my fibromyalgia pain as I’ve discussed previously in my blog.

In September of 2007, I was completely unable to get dressed or go out.  On this particular day – Labor Day Weekend, I had asked hubby to set aside time for me so that I could do “whatever I wanted”.  This meant dinner and a movie.  But I couldn’t even brush my hair or teeth on that day, let alone go out. I decided that was the absolute limit of the depths of my illness – I just wasn’t going to stand for it anymore.  (I use the word ‘stand’ as a pun – Orthostatic intolerance, OI, or the inability to stand for any length of time is the primary symptom of CFS.)

Since many of my difficulties in life can be attributed to medications that I’ve received in the past, I decided to go on an all natural treatment protocol.  Two supplements NT Factor and D-Ribose have helped me to the point of being able to get dressed, exercise, do the dishes, get groceries And make dinner all in the same day.  Amazing!  NT Factor has helped with creating energy, D-Ribose has helped me with the overwhelming pain of daily living. 

Supplements aren’t the only answer though.  I’ve carefully researched the effects of diet and digestion on CFS and have found that I’ll be on my clean diet program for many months, if not years to come.   I simplify this diet into three words on another blog post: water, meat, veggies.  Other people discuss their diet and supplement results on the CFS Forum too.  All kinds of helpful info. 

My most sincere desire is that for anyone with CFS, Chronic Fatigue Syndrome, Fibromyalgia to realize that they’re not alone –  You CAN feel better,  there IS hope,  the research is showing results, you can do it without spending a million dollars on doctors or drugs, and the Community is there for you.

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A Half Day of Work – The Aftermath

October 15, 2007

Exhausted bear from markontheworld.wordpress.com

I had a new landscape client meeting last Saturday.  Typically when I have a meeting in the morning, I don’t sleep the night before.  This happened on Saturday too.  So already at half mast, I trudged off to my meeting and things went well.  I measured her deck, her gardens, her yard for my upcoming garden design and then hubby took me to the Whole Foods Market.  I struggled through the store, but I did pick up some Quinoa pasta which I love and it’s on my diet.  That store too, is positively filled with a million yummy things that I can’t eat – sadness.Sunday was a good day, I attended to my hubby’s needs and otherwise goofed off in splendor. 

But today has been one severe Ouch.  I woke dead tired.  I’m on a colonix 30 day cleansing program and only just now at 5pm have I gained enough energy to mix & slurp the morning powder drink.  That is the sum total of my accomplishments today = mixed one gooey fiber drink.   I hurt all over from bending & stretching to get that lady’s measurements on Saturday.  I’m exhausted from not having slept on Friday night – still.  I want to go back to bed.  I never let myself do that though,  I let myself sit on the couch instead.  If I did go to bed, I’d wake up at some terrible hour like 1am and then I wouldn’t be able to make any noise and I’d end up needing food.  Can’t make food while hubby is sleepings.

Usually  I like to work on my little marketing webpages.  Today I just don’t have the energy.  I’m hoping my little webpages will make enough money for my Christmas shopping.   Deep down, I don’t really think they will, but for some reason I enjoy deluding myself.   It’s good for me to think that I’m being productive somehow.  It’s easy to get caught up in all of the “You can work at home and make money!” websites that you find.  I think it really translates to: “Carrie can work at home in her pajamas, take naps, feel miserable and still make less money than ever imagined possible!”   Maybe I could write an e-book on “How To Not Make Money” and market it for $29.95!  I seem to excel at that 🙂

For those of you curious enough, here are my at home marketing sites.   Think I can make $30 by Christmas?

Coffee World: A Place For Coffee Lovers

Tibetan Jewelry

For the Love of Acid Cigars

Is Chronic Fatigue Killing Me?

Chronic Fatigue and NT Factor

Treat Your Depression Naturally


Feel free to see my other worlds:
Bee Movie Toys & Games
Coffee World
For the Love of Acid Cigars
Harley Davidson Gifts

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Sex and Chronic Fatigue Syndrome

October 9, 2007

Kiss Klimpt 

I found that someone had done a google search for “Sex and Chronic Fatigue” and landed on my blog recently.  In my recent research, I haven’t come across any discussions on the matter, so I’ll delve into this tasty topic for a moment or two.  Following is my experience and my advice for those couples where one partner is suffering from this syndrome.

Is having sex possible with a person suffering from Chronic Fatigue, CFS?  Yes. But some considerations are in order.  It helps to understand that CFS sufferers have a daily energy output or allotment.  Once that energy is spent, it’s all over, time for bedrest.  Sex is a high-energy activity and consumes nearly 100 percent of our daily energy.  Very often, I’ll tell my husband he’s getting just a ‘bite-sized’ sex portion, we call it a bite sized snickers bar, meaning that our sexual activity will be delicious but short lived.  It’s not a quickie in terms of attitude, it’s a quickie in terms of how active I can be for him in bed.  Apparently orgasms zap a ton of energy, very enjoyable but it comes with a price.  After sex I need to rest.  It doesn’t always mean a nap, but it definitely means that I’m not going to do the dishes, or laundry that day.

Diminished libido:  CFS patients have reported diminished or non-existent libido.  This is true in my case as well.  It can also be said that I have a diminished capacity for any ‘normal’ activity though too.  This lack of libido and recognition of the energy required, can cause some sense of trepidation or anxiety for the partner with CFS.  I actually have to plan in advance when I can devote the sex energy to my husband and prepare the household the day before, so that no futher demands are placed on me for that day.  While my libido is pretty much non-existent, I do love my husband so much that I want to please him in any way that I can.  I want to give him sex.  Sex makes men happy 🙂  Plus, if I take the energy to give him some good lovin, then my having CFS doesn’t seem to affect him that much and he’s much more capable of tolerating my illness.  

Sex hurts:  This is another important consideration for the partners of CFS sufferers.  Chronic Fatigue is almost always in consort with Fibromyalgia.  CFS sufferers hurt all over, every day, relentlessly.  Everything hurts.  Sometimes for me, being touched hurts.  My muscles fail easily under most tasks and then I have to pay for it the next day.  It doesn’t really matter what sex position we include – they all hurt.  This is why I mention the bite-sized portions of sex above.  A shorter duration of sexual activity lessens the repercussions.  In addition, we make use of pillows, lots & lots of pillows.  We use the pillows to lift my body into different positions so that I don’t have to use the energy to support myself.  The pillows also offer much needed cushioning to my elbows and knees.  Am I getting too detailed?  Is it time to change the channel yet?

Oral Pleasures:  My diminished libido also leads me to offering him oral pleasures instead of my whole body.  This is one of my avenues of making sure that he’s given good attention while saving some of my energy if I’m having a slower day.  This is an excellent substitute – he’s happy, I’m happy, but even this outlay of energy often has its price in terms of my energy allotment.  I still have to rest afterwards, I’m just not a complete zombie.  Turning the table around and offering my secret treasure to him for oral sex is very difficult for me.  Most women typically require advanced bathing techniques to feel comfortable enough for this activity.  So now you’re asking me to bathe and offer my charms, and have sex?  Only on the very best of days do I have enough energy for this.  It’s not that I don’t love you, it’s that afterwards, I feel like I’m dyin.

I hope this post gives partners of CFS sufferers some insight into why when you ask for sex, we roll our eyes & say “Are you out of your ever-lovin mind?”.


You’re invited to visit my newest sites:
Wall-E-Toys
U.B. Funkeys Explained
Christmas Novelty Stringlights
Shrek the Third Toys and Games
Ratatouille Toys and Games
Best 2008 Calendars
Skull Gift Headquarters
Spiderwick Chronicles Movie Toys

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I’m Feeling 10 Percent Better!

October 6, 2007
I’ve noticed a 10 percent reduction of my CFS, Chronic Fatigue Syndrome in 35 days!  Smiling to myself,  I imagine you’re thinking : “What’s she so happy about? 10 percent is next to nothin.”  It’s huge to me, after wallowing in self-pity and ‘dissaustion’ (as my nephew used to say) for years.
How can one quantify a ten percent improvement?  Well..  I still feel like crap-o-la, but I notice that when I’m on my feet, I can do a couple of extra things without even thinking of the challenge.  For instance, last night I was making spinach casserole for dinner (mmm yummy I should post that recipe) and while the spinach was on the stove cooking, I just did the dishes – boom! done.  I must have stood there for 10 minutes without realizing it.  Typically, I’d be wholly mindful of any 10 minute standing session and at the forefront of my mind would be when I could sit down, where is the chair, I feel like I’m dying.   Not only that, but doing the dishes would not be my first choice of activity if I were presented with 10 free minutes of standing time.  I notice other little things too, but they’re still on the little scale. 
To compare, a prior spinach casserole cooking session would go like this:  put the spinach on the stove, go sit down immediately. rest.  go open the tomatoes and get the parmesan cheese, taking the spinach off the stove. go sit down. rest.  go complete the spinach recipe, putting it back on the stove. rest. 
What did I do to achieve this minor change?  I attribute this change to three things:  
  • Being entirely off of sugar, processed foods, white flour, most carbs for 30 days now. 
  • NT Factor 
  • Hope  
The transition to a no sugar, no processed food diet was difficult.  I got myself off of sugar first.  For the first three days, I allowed myself to eat anything under the sun that didn’t have obvious sugar in it.  I kept my tummy filled with potatoes, big mac’s, nachos, steak and diet pop.  (Advice to those of you that want to try this:  BBQ sauce and/or alcohol will cause your downfall – I consider them both obvious sugars.) The idea here was to distract my body’s craving for sugar by overloading on carbs and fat.  Then after 3 days, my body wasn’t absolutely demanding sugar – I could think relatively straight.  Then I began the strict diet of steamed vegies and one serving of meat per meal.   There’s another trick here too.  I eat my vegies first.  If I begin by eating a piece of steak or some chicken cacciatore, I can’t eat all my vegies.  The large servings (usually 3 cups) of vegies are what keep me from being hungry later.
NT Factor has been shown to clinically reduce fatigue among CFS patients by improving mitochondrial/ATP function.  I’ve discussed these clinical studies in an earlier blog, Oxidative Stress, under Mitochondrial Anarchy.  The product that I use is called NT Factor Energy.  I purchased this from Dr. Hoffman’s website.  NT Factor is available in a couple of different health supplements, but I wanted to take it as a stand-alone product, simply because I had already purchased my vitamin formulas separately.  Within four days of taking these pills, I could feel my brain fog clearing.  I’ve now been on this supplement for 10 days.  My condition has definitely improved.  I think in the clinical studies, patients were placed on this supplement for 12 weeks before their energy levels were compared.
Hope – I can’t say enough about the psychology of hope.  Languishing under the CFS onslaught, I was mourning so many losses: no hope of ever being on a trail in the Yellowstone wilderness and coming upon a moose again.  No hope of ever gliding my canoe across that pure silken coal-black water in the Boundary Waters  again.  No hope of finding a gold or diamond necklace under the sand while metal detecting at the beach.  Things have changed.  I’m starting to dream!

Moose


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

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Doctor Visits through the Years

October 3, 2007

chernobyltimeshare.gifMy faith in medical doctors has diminished through the years.  When I was 17, my mom took me to a doctor to lose weight.  He put me on amphetamines for a year.  I think I lost 10lbs.  The repercussions have been lifelong.  Perhaps, this treatment is at the root of most of my troubles.  It’s my considered opinion that the amphetamines caused: adrenal fatigue/hypoglycemia, relentless tooth decay, toxicity ultimately leading to Chronic Fatigue.

When having hypoglycemia, my mom took me to an endocrinologist – his conclusion: I was taking drugs, get me into rehab.  I pursued healing through a chiropractor instead – his conclusion: hypoglycemia/toxicity.  He put me on a detox diet, supplements and sauerkraut enemas.  I was cured in 9 months.

When I was in my early 30’s, I decided to do something about the hair under my chin and my testosterone overproduction (I’m female 😉  ).  My gynecologist prescribed birth control pills.  The result: severe asthma, debilitating clinical depression (for one year), susceptibility to the CFS virus.  The hair under my chin didn’t improve, btw.  (I’ve since had it miraculously removed through laser treatment – yay!)

The severe asthma lead me to a Dr. at the university.  She prescribed theophiline.  The result: again, I suspect it left me vulnerable to the CFS virus, which I contracted at the University.  Several students in my landscape architecture studio had the virus during that time. (The L.A. studio was very small – perhaps 75 students or less.)

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For years during my struggle with chronic fatigue and asthma, I was inundated by a series of lung infections, often leading to emergency room visits.  I was continually placed on antibiotics and prednisone.  (2 well documented drugs that can inflame CFS symptoms.)  At one point, I was placed in the Intensive Care Unit after taking a flu shot.  After I got out of the hospital, my sinus infection never left.  I was placed on Augmentin for 6 months.  At this point, I relapsed – completely debilitated and bedridden from CFS once again.

After reading Crook’s “The Yeast Connection”, I sought treatment from a Dr. listed in his book.  This doctor prescribed a series of allergy tests.  The allergy testing again, made me collapse after each test.  He also placed me on Diflucan.  While I was taking the diflucan, I was much improved, but after each prescription ran out, the CFS symptoms returned full force.  This did prove to me however, that the candida connection is an important component in my energy levels.  I also sought out additional chiropractor treatments.  My back feels great but no solace for the CFS weary.

Not long ago, my brother said to me: “Why don’t you think yourself better?”  I wanted to smack him, does everyone just think I’m lazy?  But I responded to his comment.  I decided that I could work toward a 50 mile backpacking trip in Yellowstone Park – that would fix me, right?  I trained from February to July, beginning with 10 minute walks, graduating in time to 4 mile hikes with a 40lb pack.  From the very beginning of training through to the Yellowstone trip, each time I trained, I collapsed afterward.  I would immediately fall asleep after walking in the door, and then require one or two rest days afterward.  The situation was the same in Yellowstone.  We backpacked in 3.5 miles to the campsite on our first day – I collapsed immediately.  Fortunately for me, snowy weather threatened and we returned to the car campground the following day.  I was exhausted.  Proving to me that I can’t cure CFS through exercise, despite improving my stamina.

shoshone.jpg

I sought out another Dr.’s treatment.  This time I was placed on Wellbutrin, which has shown some relief for CFS sufferers.  This nasty stuff put a clamp on my brain that I can barely describe, I truly felt like I was in a concentration camp:  “You Will smile when you say that!”  I lasted on that treatment three days.  I felt like suing that doctor for cruel and unusual punishment.

So here I am, back to square one, nearly at the point of drinking sauerkraut juice for breakfast again, not to mention flinging it up my butt.  (Weird part is, that chiropractor guy died, or I’d be back in his office.)  The truth of the matter is that I simply don’t have enough energy to seek any doctor’s treatment.  Just that process of several visits, having to shower and dress, then interact and take test after test, feels like it would kill me.  I’m much too tired.  Not to mention the fact that I simply cannot afford it.

But, after all this,  I do have great hope.  I really believe I’m on the right track.  I’m in this for the long-haul.  I anticipate that by June, 2008, I’ll be able to start training again for that Yellowstone trip – for real this time, with no collapse – yay me!thathurtsdoesit.gif


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

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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