Tracking my efforts to beat Myalgic Encephalomyelitis (ME), aka CFIDS, aka CFS

Tracking my efforts to beat Myalgic Encephalomyelitis (ME), aka CFIDS, aka CFS

Monday, September 30, 2013

My Lifestyle Changes in Pictures

Remembering back to the first month after I learned I had ME/CFS, I was reading everything I could get my hands on relating to this disease, trying to figure out exactly what I was dealing with.  I don't remember where I read it, but one of the first pieces of advice I ever read stated, "there is no established course of treatment for ME/CFS. A patient must try to live as healthy a life as possible and hope they are one of the lucky ones that recovers."  Although it's been two years and probably over 50 treatments since then, I still keep coming back to that simple mantra.

This is not to say that my treatments aren't helping.  They are.  But other than 1 or 2 prescription drugs, most of my treatments and lifestyle changes simply boil down to "living healthier."  In a way, even dietary supplements are just shortcuts to healthier eating.  They allow us to ingest more vitamins, minerals and herbs than would be practical through diet.

This post focuses not on supplements or drugs or even "treatments" per se.  This post is about all the little lifestyle changes I've made to try to live healthier and give myself the best chance to improve.  In some cases, I simply feature items that make life easier with ME/CFS, but offer no health benefit.  To the extent that some of these lifestyle changes feature products, let's be clear that I'm not trying to endorse these products.  This post is more about not using the old products that these featured products replaced.


These first few lifestyle changes all deal with improving sleep.  At least two ME/CFS specialists have told me that "it all starts with sleep."  They said that real improvement is almost impossible until a patient fixes their sleep disturbances.  So, at the outset, I made sleep a major priority.  (I should mention that I've known other patients who have tried what I've outlined below and still struggle with sleep issues, so it's clear  that results depend on the individual and how severe their ME/CFS is.)

Opaque window shades:  Most window coverings let light through, so the nighttime environment in a room still can be fairly illuminated.  These window shades are completely opaque and help keep the room pitch black.  I never realized how much of a difference a darkened room could make until these shades went in.

In a similar vein to the above, I unplug my bedroom DVR every night and make sure there are no other electronics giving off small amounts of light.  You might be surprised - it makes a difference.  Some would recommend not even having a TV in my bedroom but, hey, this is still America and I still have my first world addictions.

Body Pillow:  I learned of the concept of a body pillow when my wife purchased one during her first pregnancy and then continued to use one even after the pregnancy. I used to tease her about this enormous stuffed "turd" and the fact that it took up half of the bed.  Then one morning, about 6 months after I contracted ME/CFS, my wife had already gotten out of bed and I thought, "what the heck."  I threw a leg over the body pillow and pulled it close.  I knew right then I would never sleep without a body pillow again.

It's such an obvious concept, yet it never occurred to me or most other people.  It is very unnatural for your ankle, knee, and elbow to be pressed up against its other corresponding ankle, knee and elbow.  The natural position for these body parts is at least shoulder width apart.  But for us side-sleepers, that's what happens all night - they come together, which strains our bodies, particularly the back. It was pretty amazing to me what a difference in comfort and sleep quality it made simply by putting a little separation between these body parts with the use of a body pillow.  Now it's not uncommon for me to fall asleep in one position and wake up in that same position 7.5 hours later.  I realized that a lot of tossing and turning that goes on at night must be due to discomfort from lying too long in a particular sleeping position.  Each time you toss and turn, you wake up just a little, so if you can minimize these disturbances, it really seems to improve sleep.

Now my wife is the one who teases me, a grown man who cuddles with a pillow every night.  But I usually don't hear the teasing because I'm too busy slumbering.

(Tip: Most body pillows are shaped like a candy cane, with a curve at one end only.  If you buy one, get one that is curved at both ends.  Your head rests in the top curve and the bottom curve goes between your ankles. This ankle separation is key, in my opinion, and most body pillows don't provide it.)

I sleep with earplugs every night.  I started doing this after reading several reports about how low level noises--noises we're not even aware of--interfere with sleep.  (e.g. Sleep Foundation)  My sleep definitely improved with earplugs.

Natural toothpaste:  The original reason I switched to natural toothpaste was because my genetic testing & methylation panel suggested that I should avoid sources of sulfate as a CBS+ individual.  But since then, I've come across other good reasons, particularly, the avoidance of fluoride.  Note that only some types of Tom's of Maine toothpaste are flouride free.  It's such a simple and easy switch to make that I can't believe I didn't do it sooner.

Most of us, I would imagine, have options for filtered water in our kitchens.  Maybe it's from the built-in dispenser in the refrigerator, or bottled water from the refrigerator.  But what do you do when you're at your bathroom counter brushing your teeth, or taking supplements, or simply getting a drink of water in the middle of the night?  A lucky few have whole-home water filtration systems, but I'm not one of them.  Instead I found this small filter that attaches to the tap and filters all water that comes through the faucet.  

Because going "full hippie" is not an option for me, I still need to use some type of deodorant.  But the problem with almost all deodorants is that they contain aluminum.  Many natural living enthusiasts will tell you this aluminum is problematic even for healthy people, but according to Dr. Yasko, ME/CFS patients have particular trouble eliminating aluminum from the system due to our broken detoxification mechanisms.  All that aluminium just builds up in our systems and then leads to cascade of other problems, especially in the gut, according to Yasko.  Yasko is big on detox of all metals but aluminum in particular, so this switch was a no-brainer for me. 

But, I recently read a report that even Tom's of Maine contains an ingredient, propylene glycol, that is linked to cancer and developmental issues.  So I'm looking for a new alternative.  I refuse to resort to patchouli oil!  

Ahh, the old supplement bin.  Many of us have one.  This is the box that I would never, ever show anyone outside the ME/CFS community, lest they think I'm insane.  They just wouldn't get it.   This box not only contains all those half-used bottles of supplements that, for one reason or another, didn't work out, but also all my in-waiting backup bottles, since buying in bulk saves money.  

The health records binder.  Actually I have another one of these in a closet somewhere with all of my labs and doctor reports.  This one pictured here is just for my nutrigenomics research alone.  Again, I would never show this to an outsider.  

That weird black box in the corner of my bedroom is my portable infrared sauna.  I sit inside it on a folding chair, and my head sticks out a hole in the top (under that flap).  I watch TV or read a book for half an hour and come out looking like a glazed ham. I've written about this many times before here but I'll say again that I credit this sauna for the increase in my baseline that occurred around September/October of 2012.  My body seemed to really need this extra mode of detoxification.

Supplement case:  I'm one of the fortunate ones who is not housebound, so I sometimes find myself out of the house at supplement time (which for me is 3 times a day).  So I keep all my supplements in this soft cooler and just tote the whole damned mini pharmacy around in my car.  It's not sexy, but it works for me.

Speaking of things that are not sexy, I piss on plastic sticks once a week just to keep track of sulfate and body PH.  It's like I'm a pool boy, only much less tan.    

Speaking of pool boys, here is my backyard Jacuzzi that I owned prior to ME/CFS, but had given up since becoming ill because of the affect of the absorbed chemicals on a broken detoxification system. However, thanks to NoPosterGirl, who alerted me to the fact that Dr. Cheney is recommending hydrotherapy as a way for ME/CFS patients to get their all-important lymphatic drainage flowing and as a way of reducing cytokins, I started looking into ways to maintain the spa water quality without chemicals. I discovered a way to do it using ozone and mineral sticks.  So I'm back in the spa, baby.  Like the sauna, it usually leaves me with a feeling very similar to that old after-workout feeling.  Intuitively, you just know it's good for you.

I use the term "paleo" diet just for ease of reference, but my diet really isn't as complicated as all that. Basically I just avoid sugar, grains, casein and a few other things that cause problems for people with candida and ME/CFS.  I try to keep my carb count to under 70 per day, but I only keep track in a very vague sense and don't freak out if I go over.  I could really do an entire post on all the diet-related products I have found, but who wants to read that.  Suffice it to say, I've been finding more and more products at my local organic grocery store that replace old staples like crackers, bread, chocolate & soft drinks. They're hard to find and more expensive than the original, but worth every penny.   

Foam Roller:  When you're severely limited in the amount of physical activity you can do, foam rollers are a good way to get that "stretched out" feeling without the workout.  

Thanks for reading.  I know that we all have different lifestyle changes that work for us, and I always enjoy reading about the ingenuity of the ME/CFS community.  I've read posts from people making their own accommodations that blow away anything in this post.  There was a guy with severe OI/POTS who build a "desk" that allowed him to use his computer while lying flat on his back (hint: the monitor was face down on a glass table).  I've seen jerry-rigged air filtration systems and many other ingenious inventions. Please, if you have other lifestyle changes that you think are worth sharing, I'd love to hear about them.  


  1. Whoa whoa, I have so many questions! How can you be a side sleeper and wear ear plugs? Any tips? They feel like they're pushing into my brain. Do you know off the top of your head which Tom's toothpaste is fluoride free? What site do you use to buy cheaper supplements in bulk? Can you talk about what urine pH and sulphate you are aiming to have? And what brand of ph pee strips you buy? I adore my hot tub and would love to know what you discovered about alternatives to chemicals! Who wants to read a diet-related post? Me! Do you avoid ALL grains? What are those alternative products you've found? I love product tips for our frustrating diets. And foam roller what? I want to know more about all of it! I have a post halfway done of pictures of my crazy life, but I am going to take inspiration from this post and take more pics of changes I've made since being sick. Thanks for another interesting read!

    1. Hi Elizabeth, thanks for the comments.

      -I know what you mean about the earplugs and side-sleeping, but after a few nights I just got used to it. It used to feel like they might get pushed into my ear and lost in there, but that never happens. It's just a sensation that I had to get used to.

      -The Brand of Tom's toothpaste shown above is Fluoride Free, if you can zoom in on the picture. The fluoride free ones are clearly labelled as such right on the front as a selling point.

      -Supplements in bulk: I buy from a multitude of sources just depending on the supplement. Most commonly, I use my Amazon Prime account. Often on Amazon, supplements come in packages or 2, 3, or 6 bottles for cheaper per bottle.

      -The urine sulfate is something that I'm monitoring as part of the genetic testing/Dr. Yasko thing I'm doing. Since I'm CBS+, I want to get my urine sulfate under 400, or at least 800. The Ph is something I'm less sure about but you know how you keep reading that body Ph is a good indication of overall health? It can also be another way to help monitor body ammonia levels, which are high in people that are CBS+. So i"m trying to get up to PH neutral: 7. Right now I'm hovering on the acidic side at about 6.5 or 6.75. Close but no cigar.

      -Hot Tub: There are mineral sticks that you can put in the water near the filter that keep that water clean. My Jacuzzi also came with an "Ozone-ator" which infuses the water with ozone. These two together supposedly help keep the water clear without chemicals. So far, they have worked for. Actually, it even seems to work if I turn the Ozone off and just use the mineral sticks, as long as I change the water and the minder stick about every two to three months. Mineral stick is $20 on Amazon:

      -Diet: I try to avoid all grains, but sometimes I let a little slip in for special occasions. I don't stress over my diet. To quote captain Barbosa from Pirates Of The Carribean, "Arrr, It's more of a guideline than a ruuule." A couple products that I like:

      -Flackers Cracker - crackers from flax seeds
      -Stevia Chocolate by Dante confections
      -Zevia soft drinks, which I only drink occasionally because they have "natural flavors" which are excitotoxins.
      -Coconut Dream brand ice cream has coconut milk ice cream made with erythritol. Again, I save for special occasions.
      I know there are others but I can't think of them right now...

      -The foam roller: I was having a hard time describing how to use it so I thought there might be a YouTube video or two demonstrating it. Here's one:

      I fully recognize that even this level of stretching may be too much for some patients so it's not for everyone. I mostly use it for my back (feels AH-mazing) and the "IT Band" on the side of the legs. Sometimes the gluts (butt muscles) too. It's a cheater way of feeling like you just got a workout without actually working out. It sqeezes the muscles and gets the blood and lymph flowing.

      Thanks for sharing your thoughts, E. Talk to you later.

    2. whoa, I should have added that I don't expect you to answer my ridiculous number of questions! But THANK YOU! I'll answer properly soon. Thank you again x

  2. I agree that noise has an incredible effect on my sleep. However light has virtually no effect on my sleep. Actually, if I'm having trouble falling asleep I'll turn the light on an read a book, and fall asleep with the light on no problem. This strange lack of sensitivity to light when it comes to sleep may explain why my sleep is all over the place, with highly variable sleep times from 10pm to 4am.

    I'm curious, with the earplugs. Have you noticed seeing "floaters" in your eyes since using them?

    1. Hi Greyson. I have not noticed floaters with the earplugs. Do you get them?

    2. I do have floaters, but I've had them since I was a teenager, long before I remember ever using earplugs.

      I just have heard a couple stories of people who use earplugs, and then soon after started seeing floaters.

  3. where did you get the full body pillow?

    1. David, I got the body pillow from Amazon. This is the brand I have

  4. So many great ideas there. I'm with you on the diet. I also just say I'm Paleo because it's easier than explaining what I've cut (which is pretty much identical to your list - grains, diary, eggs, whey, yeast , but mostly grains. It's made a huge difference for me. I'm also with you on the light in the bedroom. I can't sleep with any on. I figured out how to actually turn off all the lights on our Tivo so I didn't have to worrya bout unplugging it.

  5. Hey I have a quick question about your blog, could you email me when you have a chance? Thanks! -Cam

    1. Cameron, I would be happy to. I went to your G+ page and did not see an email address. But I must admit I'm not too familiar with G+ so maybe I missed something. How do I email you?