Monthly Archives: April 2011

Sleep – Part 1

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I became aware at a fairly early age that I did not sleep like other people.  It was a difficult thing for me.  Difficult to fall asleep, difficult to stay asleep and difficult to wake up.  As a young girl I loved the late night fun of a sleep over, but hated, hated to stay the night.  I could never get to sleep, I woke up all night, failed to get back to sleep and finally woke up exhausted and wanting nothing but to crawl into my own bed at home.  When I hosted sleep overs I made it clear that sleeping bags were to be brought and no one would be trying to share the bed with me.  Sleep was already a major issue for me.

I traveled across and out of the state to show dogs with my aunt.  I never slept.  We often left before dawn and I had only just fallen asleep.  I couldn’t sleep in the hotels.  I couldn’t sleep when visiting relatives.  I just couldn’t seem to sleep.

By the time I was 12 I was already taking prescription drugs to “treat the insomnia, depression and fibromyalgia”.  It never really helped.  When my first baby was born I was awake for 6 days straight to say nothing of the attempts at finding sleep between night nursing sessions, teething, etc.  By the time I was 23 and he was 1 I was so deeply, painfully, awfully tired that I submitted to a prescription for the well known sleep drug Ambien.  A couple of years later I had a prescription for more than double the recommended dose and was still exhausted.  All. The. Time.

The pain?  It was out of this world.

It was during this time that I became aware of two things: one, that people who experience Fibromyalgia almost never achieve Delta wave/Stage IV/Restorative sleep, and that an experimental drug called Xyrem (also known as the illicit date rape drug, GHB) was now available for treatment of Excessive Daytime Sleepiness in people with Narcolepsy and being tested as a treatment for Fibromyalgia.  The belief was that both disorders are caused by the lack of proper sleep cycles.  It was also said that this was the only drug known to cause State IV sleep and that most others actually prevent that all important stage of sleep.

After convincing my doctor that it was for me, he had to become a registered Xyrem prescribing physician, write the prescription to appear as though it was being prescribed “on label” so that my insurance would cover the $3,000 per month prescription, and give me the benefit of the doubt in my ability to figure out how to use it, as there were no real guidelines.  It was a terrifying, sickening and painful process, but after a few weeks I noticed that though I was still exhausted, lost almost 30 pounds and had intermittent shakes, I was without pain.  For the first time in memory I was without pain.

I described it to my husband when the realization came upon me.  As we were riding in the car I told him that I was “feeling funny”.  I wasn’t feeling bad but I was definitely frightened of this wholly different feeling.  It was through trying to describe the feeling to him that I realized that what I was experiencing was a complete absence of pain.  “It feels like the world used to be made of cold, sharp steel.  Everything, clothes, beds, the air, it was all cold and sharp.  Now it feels like everything in the world is soft, like butter.”  This was the best way that I could explain it.  It was like the softness of a warm knife into butter had become me.  I wept.  Sleep. Who knew.

Almost one year to the day later.  I conceived my second baby and the gig was up.  This was not a pregnancy or breastfeeding friendly prescription.  I’m not sure I can describe the full belly feeling of fear that took hold of me when I realized that I was going to be quitting the prescription and that the pain would likely return soon after.

I had to find another solution.  Forfeit was just not an option.   Now that I knew how it felt to live without pain I could not consider a return to the old life.

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Update – Two Difficult Weeks

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After the last post I was feeling dramatically better; expecting that if the improvements continued at that speed that I would be Fibro free again in no time.  Unfortunately, the improvements didn’t continue as such.  I have not gone back on “the rules”, but quite suddenly I started to get symptoms flaring up; pain, serious fatigue, itching, etc.

Looking at what I was doing, fearfully because of the rise in pain, I noticed a few important things.

One: the fear that rises up when I feel the beginning of the pain, if someone asks me how I feel, or if I accidentally leave home without anything for a pain flare up, the fear causes the minor beginnings to flare like blowing on a fire.  Fear/stress = pain when at this delicate stage.  When I am stronger and more sound this is not the case, but at this level of weakness and sensitivity to all triggers, it is a real problem.  It was actually my 8 year old son that helped me work through this.  Taught him well, I did 🙂  He just said, “Well, mama, sometimes I feel afraid and then I get all of those ‘afraid feelings’ like sweating, and tummy ache, but then you tell me that there isn’t anything to be afraid about and you help me feel okay about whatever is happening and all of those things go away so that being afraid isn’t bad anymore. Then it isn’t even there anymore. That’s what you have to do.”

He was right.  I closed my eyes, and forcibly relaxed my whole body starting from my scalp and working my way down and up again.  Then I made sure that I was breathing deeply and slowly, and starting visualizing things that made me feel happy or excited like a walk on a tropical beach (so different from the high desert where we live), a picnic by the lake with cake (it’s a dream, there can be cake!), warm coffee – cup hot on my palms, etc.  After about 5 minutes I realized that the flare had subsided back to a minor sensation that couldn’t really qualify as pain.  Without the fearful response to what this feeling means, it would likely have stayed there.  It made me wonder how much of my suffering is skyrocketed to severe pain because of the fear that it will progress to that.  I’ve been keeping a close eye on this and am finding a lot of truth in it.  In more stressful situations, it can be hard for me to keep a handle on how deep and firey the pain gets.  I have been working to tell myself, It’s OKAY.  This is what it feels like.  You know this feeling.  Maybe it will get worse, maybe it will disappear… either way, the only thing to do is relax as deeply as possible.  Accept.  Know that it will pass.  Breathe, and don’t tense up!  It’s been helping a lot.

Two: Water.  Water is the next key point.  I have come to understand that it is at least as important as staying away from gluten and preservatives.  Any degree of low hydration will  result in pain for me.  And it will result in the most stubborn, deep, widespread variety.  For me this means a gallon of water every single day.  One day of poor intake, say a quart or two, will result in pain before the day is out (usually around dinner time) and if I don’t remedy the situation I will wake up achy and at a difficult deficit in the morning.  Sadly I do this at least twice per week.  Living in the high desert I have to consider that missing some of the water I need is only going to add to the battle that I deal with everyday with the high, gusting winds, 8,200 ft elevation, desert arid air, sun exposure, and year round wood-stove heating (mountain temperatures).  I think of it like this:  I pretend that I am trying to keep a garden alive in the desert.  This requires constant watering, and reduction of anything that will dehydrate me, such as excess sodium, and certain foods.  When I’m dealing with a real dehydration situation, I help myself out and add some coconut water to the mix.  This increases the rate at which I can rehydrate without increasing the inevitable trips to the bathroom.

Sleep.  Oh, my, sleep!  It is so very important.  Quality, undisturbed, delta-wave sleep is necessary.  Without it I might feel okay for a few days or weeks, but I will be tired, and I will be ever so much more susceptible to all environmental triggers.   A thing to understand:  nearly every single sleep drug, antideppressant, anti-anxiety drug, and alcohol will dramatically reduce ability to achieve delta wave sleep or completion of a full sleep cycle.  Most will prevent it entirely.  Sleep is such a deeply, widely complicated issue I’m going to have to cover it over a series of posts.  I spent years and years battling this issue.  I first became aware that I did not sleep easily or deeply when I was about 5 years old.  I struggled with it until I was 27 and it rises up again and again when I don’t stick to the “sleep rules”.  I will have to cover those in another post.  The last five years have been overlapping issues of pregnancy, breastfeeding and nightwaking/teething babies.  It is possible to overcome a block as big as a waking baby to get the kind of sleep necessary, but it takes real dedication and a sacrifice or two.  It’s worth it though.  Nothing will change your outlook on life and your strength against pain like quality sleep.

I’d like to touch quickly on detoxing/die-off symptoms before leaving you.  I realized about a week into the rising of symptoms that I was dealing with detox/die-off symptoms.  After making dramatic changes in my diet, like cold-turkey removal of all grains and sugar, I should have expected it, but somehow didn’t.  Depending upon how long I have been abusing my body with things like gluten, sugar, carageenan, etc. I will experience a whole slew of symptoms ranging from mildly irritating to two days of feeling like I may be dying of cancer, unable to move, hardly speak, etc.  I had been abusing it pretty badly for a long time, so I got two days of the latter.  The pain was too severe to mask, even with pharmaceutical opiates and herbs combined, my stomach ached, the fatigue was deep enough to make it difficult to speak and remember to keep my eyes open.  My heart palpitated, my skin itched, my bones burned and I suffered breakouts all over my face and a few other enjoyable issues.  The thing to know:  given the opportunity, your body  will heal itself.   This will include a forceful removal of toxins through every avenue possible: kidneys, liver, skin, bladder, bowels…  It usually doesn’t feel great, but proper support of your systems while it is happening can reduce the length of severe suffering to a day or two.   Watering your body like you have the flu, REST, vitamins, probiotics and essential fatty acids like those found in fish, (freshly ground) flax seeds, chia seeds, hemp seeds and especially fermentd cod liver oil will go a looong way to helping you recover more quickly.   Gently scrubbing your skin in a warm bath at least once per day and then oiling your skin with a quality, unscented oil like olive oil or coconut oil will help prevent rashes, breakouts, dry or rough patches, redness, itching and swelling.  Your skin is the largest organ of detoxification and your body’s preferred first route.

I’ll leave it there for now, and follow up with more detailed posts on all of these topics.

To our health, Rebels.  We can level this thing.

Update – Week 2 Beginning

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We took a trip to Santa Fe this past week to pick up the pasture raised meat we buy from a farmer in West Texas.  It comes out to be ever, ever so much more nutritious than the meat we can buy at market, and even with the trip to Santa Fe it is considerably less expensive.  This time we brought home 82 pounds of meat and soup bones.

Because it is about two hours drive, and we have two small children and an infant, we prefer to stay the night,  take in the museums, and get the shopping done that we cannot do in Taos where we have only a small Walmart for most necessities.  This can pose a problem for a family that is working with severe diet restrictions, a budget and supplementation.  Sooo, we use an online booking site to score our favorite time-share hotel/condo.  The units come with a bedroom, full, stocked kitchen, dining table, and living room, for around $70 in the summer and $62 in the winter.  This allows us to prepare breakfast and dinner at our hotel and keep our food ready for packing a healthy, on the go lunch.

This time we opted for organic, homemade granola and plain yogurt with honey for breakfast so that we could just lounge in our PJs and have a lazy morning before taking in the town.  For lunch we had sliced Applegate Farms Peperoni, raw organic cheddar, rice crisp crackers, apples, and  oranges.  For snacks we had apples, oranges, dried figs, dried mango, raw almonds, pecans, peanuts and raisins.  Nichola had an extra snack of Wild Planet Sardines in marinara sauce and Quinn had the lemon variety.  They will each eat about 2/3 of a can and share some with Simone and Jeff.  Packed full of healthy omega fatty acids, and lacking in the mercury found in larger fish like tuna, this is a wonderful, not too expensive snack for them to be having.  I’ll be honest.  I can’t eat them straight.  Marinara sauce, or no, they wig me out.  I prefer to have them mixed in canola-free mayo with spices and served on crackers, just like tuna salad.

For dinner we took a jar of pre-soaked chickpeas and made soup.

Because of the fridge in the hotel (most come with at least a mini-fridge these days) we were able to take our cod liver oil, and I used my ceramic lidded coffee cup to take my tinctures through-out the day.  I found though that I only felt like I needed them once.   Sticking to “the rules” is helping a lot faster than I had expected.  I also noticed that the city water did a real number on the kid’s skin, and everyone developed a stuffy-head feeling as we entered the city that dissipated as we got about 45 minutes outside of the city on our way home.  I guess there really is something to say about clean country air and water.

Since we’ve been home I have only taken my tinctures in the morning and evening.  I’ve been going to bed by 10pm and waking up feeling a lot less achy.  Today I’m definitely feeling just plain tired, but altogether not “sick”.

I’m looking forward to homemade hot cocoa tonight and planning on a lazy night with a DVD (The Bucket List).  Neeka fell asleep (hopefully for the night) at 7pm.  She’s been fighting a bit of tonsilitis.  Here’s hoping that the baby will follow her by 8:30 and I can get to bed (post movie) by 10pm again.

To our health!

xoxo