Most medical conditions are improved with exercise.    Unfortunately, this is NOT the case with ME/CFS.  I know there are so-called studies "proving" it works with ME/CFS as well, but ask anyone with ME/CFS who has tried this and they will quickly tell you the reality of it.  

     Over the years many treatments for various illnesses, have been highly  regarded as effective only to be discredited, in a major way, later on.  Things like bloodletting for fevers (sometimes with the use of leeches), lobotomies in the treatment of mental illness or mercury for pretty much anything that ailed you, come to mind.  How about  these ones promoting smoking? Yikes! 

     Yes, all of these treatments once highly esteemed in their day were later proven to be detrimental and today, well, it's hard to even imagine they were a thing.

     Excercise with ME/CFS belongs in that list as well.  Hopefully, one day soon, it will be.  We can always hope!  

      Now, we do know exercise is good for our bodies and that it improves most conditions.  We're not lazy and we're not looking for a way out from doing things.   We want to be active.  Most of us were very active before getting ME/CFS and long for the days we are able to do so again.  There is a big difference between wanting to and being able to.  Unfortunately, many of us have personal experience learning this difference and we learned it the hard way.

   We were advised by the medical professionals we trusted, to exercise our way back to health. The old adage, exercising each day as well as increasing the amount each day, will build up one's tolerance.   We listened to this advice and were left with detrimental, permanent damage.    

      To put it into another perspective, we don't tell diabetics to increase their tolerance to sugar by increasing their intake of it each day.  Start with eating 1/2 cup today, 3/4 cup tomorrow, then one full cup the next day and so on.   This will eventually enable you to tolerate sugar and *POOF* your diabetes will be gone.

       Sounds silly, doesn't it?

      How about telling a person with a newly broken leg, to "run it off"?  Run a little bit further each day, building up tolerance until  *Poof* the fracture is gone and the leg is broken no more!

       Sounds equally as silly!

      These suggestions are not only absurd, but would cause further damage.  Instead, for the diabetic, changes in diet and allowances in activities are advised in order to accommodate the changes in the way the body now functions.  

       Same with the broken leg.  The fracture must heal first before exercise can make it stronger.  

        This is equally as true with ME/CFS as well.  

       Before ME/CFS, I was very active.  I had three, young, energetic children.  We owned a large home with large grounds requiring a lot of work.  I loved being active. I enjoyed swimming and walking.  I walked every night before bed throughout each of my pregnancies.  During other times, I walked at least 5 kms per day, every day.  I loved the way it made me feel.  

      The Dr. advised me to start exercising, increasing each day.  Since walking was what my body had been used of and it had worked so well for me, I decided this is the type of exercise I would participate in, to bring my health back.  I planned on easing back into it, starting with only a small portion of what I had been used of.  

        I chose an indoor walking track seeing as it was winter.  

        I started off slowly.  I walked, rested, walked, rested and so on until I had done a couple of laps.  After my second lap, I sat for a bit before moving on to  my third.  As these three laps were a fraction of what I had been used of walking, the pace I kept was much slower than my usual was and I'd also incorporated frequent rests, I figured I was off to a great start.

      Toward the end of my third lap though, I became very weak and shaky.  I was barely able to make it to the chair so I could sit down.  I was light-headed. Things became dark and I was experiencing overwhelming weakness.  One step at a time and a lot of concentration needed just to put one foot in front of the other.  I constantly felt like I was about to pass out and I had to continually fight against allowing this to happen.  Even though we lived close by, it seemed to take an eternity to get home. One.foot.in.front.of.the.other. became my self pep-talk while I continued to be shaky and fight to not pass out.    When I finally arrived home, the last thing I remember was collapsing into my bed.

     I do not have much memory of the three days which followed that episode.  A blur at best.   My husband reports my breathing became very shallow, almost not there.  At one point, he wondered if I was still breathing and considered calling an ambulance.  He was gently shaking me and loudly calling my name.  He could not wake me, so I slept in my clothes all night.  To this day, I have no recollection of this event.     

     In the morning, the alarm played for 15 minutes before I sort of heard it, way off in the distance (I was usually a very light sleeper).  Exactly like when one comes out of anesthetic -- I just could not bring myself up from that ultra thick, moisutre-ladened, pea soup-like fog.  When I finally managed to open my eyes, it felt like my early days with ME/CFS.  Weak, so very weak.  Flu-like only times 10.  Swollen lymph nodes, achy limbs and body, feverish and wide-spread pain like I had never experienced before.

      Deep-seated, throbbing, bone pain.  All my limbs felt like cement blocks.  In addition, there was pain which felt like a bad sunburn. Excruciating sunburn on every inch of my skin of my whole body.  To top it off,  every inch of my body felt like it was being stabbed with millions and millions of pin pricks.    

     It was horrible and unbearable.  I could not get comfortable.  It hurt to move.  It hurt to be still.   I needed help to walk to the bathroom and when there was nobody around to help me, I had to crawl along the floor.  Oh the pain.  

      There was so much pain, I was unsure if I could make it to the Dr.  I hoped it would go away on its own, similar to a sprained ankle does with rest.  It didn't help unfortunately and after a month of being in bed, i knew  I needed to see a Dr.  

       I hoped it would be a quick fix -- take this pill or rest for this long and you will be fine kind of thing.  It wasn't an easy fix though and after examining me, I was very disappointed when he told me I now had fibromyalgia.  

       I was completely shocked I had this reaction to exercise.   How could this happen?  I was used of walking, the doctor had advised me to do this, so what went wrong?  

      Back to the research table I went (aka my computer) and without much looking, it became clear others had experienced similar reactions to exercise.   

      Why wasn't I told this?  Why did doctors who were there to help me feel better, tell me to do something that made me worse?  I trusted them. As I continued to read, it became apparent this happens a lot and I was far from the only one.  Many get this same advice and then suffer ill effects from it, just as I had.  It's bad enough to be so ill from ME/CFS, why are we making people worse?

     Enough already. It really is time for this junk advice to stop.  Please move forward with proper research and accurate studies.  Let's find a cause and a cure for ME/CFS once and for all.

                  Moving forward to help keep the 

                                  Balance.....despite the chaos!

Seriously.

​The treatment received by the ME/CFS community from a vast majority of doctors, specialists, governments and the media, is nothing less than appalling.  

Totally unacceptable.

Similar stories emerge from person after person, after visiting a doctor or specialist.  Belittlement, embarrassment,  disbelief, disrespect, refusal to listen or desire to even learn - the list goes on and on.  This feels nothing less than heartless, cruel and uncaring.  It's difficult enough being so sick and just maneuvering through the daily challenges this brings  ( just getting to the doctor's office is a HUGE challenge alone), but to have to face this on top of it all, is crippling.  

​     Totally unacceptable.

     Then, as if that's not enough, the media picks up where the medical community leaves off by reporting wrong information.  Governments won't fund research on it or recognize it for being as debilitating as it is.  

     Totally unacceptable.

     Why do these communities continue to do this?  Why will the medical community not help those who are ill by working with them and learning what this disease really is rather than what they think it is?  Why do they continually push things that will actually make them more ill?  Why is there not more education for them on this?  Is this too much to expect from those who make their life working healing those who are sick?

     Totally unacceptable.

     Why does the media not want to get to the bottom of it all and come out with the REAL story?  In this era of rampant fake news accusations, do they not want to prove these wrong by researching then reporting the facts?  Doesn't it make sense for news establishments to work even harder to get the real story?  

     The info is out there and available, the ME/CFS community are more than ready to work with these establishments, so why do they continually refuse to learn or even look at it?  

​     Totally unacceptable.

     On a personal note, I am terrified to go to a doctor.  Recently, I did go to one, the first in about 10 years, but am unsure if I will continue with him.  

     Why, you ask?

     Because his 'care', his tests, his 'facts' (and I use this word loosely...they were facts to him, but in actual truth, they were things which will make me considerably more ill, things I may not ever recover from) which he advised.  When I heard the things which came out of his mouth, things I know will make me more ill, it terrified me.  Now to be clear here, we're not talking things I merely don't want to do or things I don't think will work. No. These are things I know will make me worse.

     How do I know this beyond a shadow of a doubt?

     Simply put, they are things in which I have first-hand experience with and knowledge of.  They are things other doctors advised me to do which I blindly and dutifully followed because I trusted them.  I believed they knew what to do and trusted they had my best interest in mind.  

     Unfortunately, they did not know and these things caused me to become bedridden, barely able to move.  Worst of all, they caused a further permanent decline to my health.  It was then I learned many doctors advise this and it has the same detrimental effects on everyone else as well.  Even though this happens to so many,  doctor after doctor, specialist after specialist, news article after news article continues to spew this stuff. 
 
     I shouldn't fear the very folks who are there to heal me, to help me get better.  I shouldn't fear they're going to make me more ill.  They should be a sense of comfort and I should be able to go to them for help in actually getting better. 

     Did I mention I am terrified to go to a Dr.?   

     I should be able to seek medical attention, without the fear of being made worse.  I struggle with this because while I know I should keep up on things, is it worth the risk of losing the little bit of health I do have?  It's a difficult place to be in, but after hours of weighing everything out, I feel keeping the little bit of health I have is worth more than the risk of losing it all. When I first became ill with ME/CFS, I was very ill. I've worked very hard to manage my symptoms and make some improvements. It's been an uphill battle all the way and the stakes are far too high.   I've been there and done that and have no interest of going down (or is it up?) that road again.  For now, I feel I have no other choice but to continue to learn about my condition on my own and treat myself.  At least I listen to me!!

     As bad as this is, it gets worse.  Many times we're told, it's all in our heads and that we need to see a psychiatrist.   Do we send diabetics, cancer patients, HIV patients or any people with other such illnesses to see a psychiatrist? Of course not and sending a person with ME/CFS to a psychiatrist amounts to sending a person with a broken leg to a cardiologist, a person with appendicitis to a dentist....you get the drift. This would be wasting both the patient and the professional's time.  

     As if fighting our illness every single day is not already enough, we have to fight with pretty much every single professional we come into contact with. Fight for the small stuff, fight for the large stuff and fight for everything in between. It's an up hill battle all the way, every single day, on every single front.  

     Our message to the medical community is clear and not all that difficult to comprehend.  We want this mis-information and wrong directions to stop and stop immediately.  We want to work with you (really, we do!), we want to get better (believe it or not...we do not enjoy being so sick!)   Many of us have lived with this debilitating illness for a LONG time - day in, day out for years! We know our symptoms!  It is NOT in our heads!

     Who among you will help?

     Who will be the first to step out from the crowd and up to the plate?

     ME/CFS deserves the same respect other illnesses receive.  It's time for this nonsense to stop.     

                Fighting onward for 

                         Balance.....Despite the Chaos!

As I scroll through my news feed, I notice some who are  "getting active" and "getting fit" as well as winning awards for doing so.

Their award may be for winning a race, for something as simple as having their participation acknowledged or it may be for something  in between.   

Their commentary is very clear. All one needs is motivation to get up off that couch.

     Plain and simple - Motivation is all that stands in the way. 

     Their subsequent message insinuates those who do not get up off that couch, lack motivation and are, well -- just plain lazy.  

       As a person with chronic illness, one who used to be very active before chronic illness, this mindset frustrates me, on so many levels.        

     When one "gives" (relatively speaking) a small portion out of their abundance -- whether we're talking money, time, energy or any other commodity -- they're still left with more than enough to cover all the other aspects of their lives.  In this case, we're talking energy and the energy they give, is a small piece of the proverbial energy pie.  There is more than enough left over to do their job, look after the demands of their family and their house, for a social life, for doing their hobbies -- the list goes on.  If this was illustrated as a pie chart, the exercise "slice" would be a small portion of the pie.  

        For those with ME/CFS or other chronic illness however, not getting up off the couch to take part in these activities has nothing to do with laziness, lack of motivation or anything else along these lines.  These folks would give anything to be able to get up off the couch, to enter such races, to do anything for that matter.  They struggle every day to do what they need to do, just to get through their daily lives.  They don't give out of our abundance, they give out of our lack. 

       The first group, the one always acknowledged and awarded, give out of their abundance.

      The second group, the one labelled as lazy and unmotivated, give out of their shortage.

     It's easy to give when you have lots, but not so easy when you have nothing or little.

      So why, I wonder, do we award the first group while not even acknowledging the second group?  Relatively speaking, the second group gives far more on so many levels. 

       The folks I know with chronic illness, fight every single day of their life. They fight to learn as much as they can about their illness and how to improve their health, sometimes going backward instead of forward as a result of using energy they didn't have.  They fight to find Doctors who will believe them and listen to them. They fight their illness just to do basic things and get through their daily lives.  Then they fight the next day, to do the very same thing all over again.     

      I would like everyone in this second group to know, you are *my* inspiration.  When I'm having a bad day, I only have to look to you.  You are the motivators and the encouragers.  You are the true fighters and represent real strength. I get so much inspiration from all of you to carry on, to keep on fighting.  I know you're not recognized for this and are most often wrongly labelled as lazy and unmotivated.  I know you give out of your lack not your abundance  and if I could, would award each of you.

       The best I can do however, is acknowledge each of you and dedicate this blog post to all of you. Please know, you're not lazy or unmotivated. You are celebrated, appreciated and looked up to, more than you will ever know!!   

                    An award for all of those who continue to fight on

​                                           in order to keep 

​                                     Balance....Despite the Chaos!

    
     Do you ever feel living with a chronic illness means also having a 'secret' life?  
One life which is 'acceptable' and the other which is not?  

The acceptable life you're allowed to share with others and the other one, well it must be kept almost secret?


         I sure do and find it extremely frustrating  !!!

     Unfortunately, the acceptable life, the one I can share the events and happenings of, the one people are willing to accept, is the not the real one.   It is the one made up of carefully planned events -- one next week, another the week after that, etc. These are not large events either -- perhaps a family gathering or even just a trip to the grocery store.  Things most people do without any thought or even on their way home from work.   I, on the other hand, must carefully and purposefully plan these events and then plan for these. This acceptable life, is the one I must give the absolute best version of me that I am able to give (and sometimes even then, it doesn't pass as acceptable).  In order for this to happen, in the days leading up to the event, I must conserve my energy, I must be on top of my diet and supplements and I must schedule lots of rests, especially the day before.

     I must work throughout the event too, continuing to conserve my energy while there -- not moving around too much and staying well within my energy envelope, at all costs.  It doesn't end there either because I need to plan a complete day of rest after the event, to recover from the event and to ward off a complete crash that could land me in bed for days or weeks. This is when I return to my bed and begin entry back into my secret life.  

     The secret  life is my real life and the real me.  This is the one my immediate family gets to see.  It's secret because, it's the one that nobody else sees or more accurately, the one they don't want to see, the one they refuse to see, the one they refuse to acknowledge exists.    

     If it were only a few people, groups etc.,  it would be easy to circumnavigate around them. It's not though, it spans across all groups of people -- friends, extended family, co-workers, neighbours -- the list goes on.  I can't even get a Dr. to see the real life I live.  Their outright refusal to learn about, understand or care what I go through speaks volumes. (This goes for a lot of us with chronic illness).

       Did I mention this is frustrating?  If I wasn't so ill and in so much pain, I may try to make it bearable by getting into my "secret life".  Perhaps I'd have a cape and a mask and go through all sorts of exciting adventures....  

          ...  But I don't.

     There is no cape, no mask, no exciting adventures -- only getting through each day the best I can.  Even on the good days, the one I've planned for and feel I've had success with, quite often seem to look different to others, like they actually belong in that secret life, rather than the acceptable one. 

        I had one such day recently.  I was giving my very best "performance", being the best version of me I could that day, one that I'd prepared for the very best I could.  It obviously wasn't up to their standard though. I wasn't doing as much as some of them thought I should and I came under their harsh judgement for not doing enough.  They saw me sitting in the chair (what I was really doing, was saving and stretching my energy).  They complained I wasn't doing enough, that I should be up helping, doing more.  They did not care what I had gone through just to get to that point.  No, *that* part is for my secret life, the one they refuse to acknowledge or discuss.  

      I know I am not alone as everyone who lives with chronic illness lives through these things.  It's a way of life for us and we do the best we can do with it all.  

      I do have a message for these folks though, the folks who have chronically ill people in their life but for whatever reason can't or refuse to see what they go through.

             It's time to wake up folks!!!  It's time to pull your head
             out of the sand!!!    It's time to look around and truly see
             the 'secret lives' your loved ones are living.  Please know,
             we are NOT lazy.  We do the absolute best we can do
             and then some.  Please take a few moments to really
             understand our whole life and what we go through daily.  
            Hopefully none of you ever have to endure what we
             do -- we wouldn't wish that on our worst enemies -- but
                a little understanding goes a long way!!

        Working hard to keep the

                    Balance.....Despite the Chaos!

    Hopeful I was.  

     Just as a new day brings new hope, I was hopeful in the new Dr. we found.

     I diligently and meticulously prepared my medical history, chronicling every detail of my ME/CFS journey from beginning to end.  I carefully documented everything I went through in my quest for a diagnosis.  I included all the specialists and doctors I visited, all my symptoms and set backs I experienced and all the tests I endured.  I noted the name of my diagnosing Specialist and his important relevance in the ME/CFS community, as well as links to the document he prepared.  I included photos.  I wrote, tweaked, organized and tweaked some more until everything was in perfect order.  On appointment day, I arrived early, in order to be organized, clear-minded and ready.

      He was very personable, polite and not arrogant in the slightest.  Great I thought and my level of hope increased.  

        He started taking my medical history and in the blink of an eye, it became obvious  that hope was unfounded,   

      * Poof *  Just like that, it was gone.  

      I no sooner had the words "CFS/ME" out of my mouth,  when he uttered the most dreaded words by folks in the ME/CFS community.  

     "The most important thing with Chronic Fatigue ..... Syndrome (he almost didn't include the word syndrome), is diet and EXERCISE." (emphasis mine)

         My heart sank.....  but, it got even worse.

       He went on to say the way for me to build up my stamina is to increase the amount of exercise I do each day.  Start off slow, then add a bit more in each day and within a little while, I'll be as good as new!! Who knew?? (sarcasm there)

      Whenever someone with ME/CFS hears another person mutter these words, it's more than obvious they do not know or understand ME/CFS, not even the basics.  

     To add insult to injury, he didn't want my  prepared history.  He didn't seem interested in treating "me", the whole me with the condition and issues I have.

      Sigh.  

     I wanted to scream and tell him that advice was akin to telling a diabetic to increase their sugar intake each day in order to increase their tolerance to it.  Half a cup today, full cup tomorrow, one and half cups the next day and so on.  Keep increasing it and gradually you will increase your tolerance to sugar.  Voila!

      Or...

     To those with a broken leg -- just take that cast off and run that broken leg off!!  Each day run a little bit more -- one km today, two tomorrow, three the next day and before you know it, that broken bone will be all fixed up. 

      When it's looked at it in those terms, it sounds silly, doesn't it?   We would never do it!  However, the advice he gave me is as detrimental to someone with ME/CFS, with the same (or perhaps worse) negative effects.    I know this from first-hand experience.  I know this from others in the ME/CFS community.

  There are so many other things that operate on this principal as well, like driving a car on a flat tire.  Does doin that re-inflate the tire?  No, of course not and continuing to drive on it makes it worse which causes further problems.

​         It is the EXACT same way with ME/CFS.

​       It's really not rocket science and yet for whatever reason, it seems so hard for most in the medical community to grasp.

      To say it was a  disappointing and frustrating appointment, is an understatement.   

      I should not have been so surprised and on some level I'm not surprised (because this thought process seems to be common place - most of them buy into it.)  However, I was hopeful.  Hopeful that this one may actually be the one, the one who understands the way ME/CFS actually works, the dangers of exercise and the reason why that thinking is so dangerous.  I should have known better than to get my hopes up, I know that.  

     It feels like this illness will never be understood by the medical community.  It feels like they aren't even trying to understand, that they want to continue on in the denying, unbelieving, ignorant state they've always been in.    

        Why is this?

        When, will they get it?

         Why can't they understand it now?

       I have fought long and hard to improve my health to the level it is.  I cannot and will not allow anyone to cause me harm or make me backslide to a low level of health, simply because of their ignorance.  

       Back to square one I suppose.

     Frustrated but still trying to keep the

                    Balance........despite the chaos!

​       

        





​

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                             Balance....despite the chaos!

     Plain and simple.   

    We HAVE to do Better.    

    Granted, there IS a lot of "talk" around mental illness these days.   Those who live with it are encouraged to talk about it.  We hashtag it.  We have special days where we talk about it.  We throw around buzz words and catchy phrases such as:  

"End the stigma"

"No shame"

"Get it out there"

"Reach out"

                       and so on....

​     Yes, there is a lot of talk about it and more awareness being made of it.

     Sadly though, that's where it mostly ends.  Lots of talk but no real action and talking alone without action is not enough.  It's like two parallel lines, running along side by side, going on forever and ever, but never touching let alone intersecting. It's time to change those parallel lines into perpendicular ones where the "talk" intersects with the "action."        

      Basic math tells us with any equation, what's done to one side of the equation, must be done to the other side.  It won't balance or work if you don't.

      It's the same with mental illness.  What's done to one side, must be done to the other if we actually want a solution. Talking about it by those who live with it must be met with action from those who connect with the folks who live with it.  
    
       Are you a business owner or employer with employees who struggle with mental illness? Are you a teacher, professor or principal with students who live with mental illness? A pastor with parishioners who struggle?  A person with a friend who struggles? You are in a position of being able to help, to take action, to put this talk into practice, to be the balance to the other side of the mental health equation?  

     Why not be that change, that trend starter, the one who takes action and makes this a thing to do?!

      Wouldn't it be great to have a mental health action day, complete with a hashtag all its own?! (something like... #methalhealthactionday).  An opportunity for businesses, places of employment, employers, schools, colleges, universities, friends etc., to showcase the action they are taking in their business, their workplace, their church, their school or their life, to make it a mentally healthy place to work, learn or be?  A chance to show what they are doing to promote health.  You know, walking the walk as well as talking the talk.

      Since we're on the topic of action, here's a hint:  Piling it on, in the form of more work and higher expectations of more work, whether it's students or employees, is NOT the needed action.  This may seem like a no brainer, but it's amazing the number of work places and schools that expect just this.  Talk about it one day, do nothing the next and make it worse the next.  This needs to be talked about and changed, just as much as mental illness itself.  

        It's also astounding to see all of the "health programs and courses" being taught where "health" is (stated to be) the central topic but in actuality, unhealthy practices are thrust upon the students throughout their years of study.  We hear, read and teach concepts such as "eat well" "sleep enough" "reduce stress" "work/life balance" "exercise" etc. etc., but at the same time pile more work and higher expectations on our students with no time for them to incorporate these healthy concepts into their daily lives.    Where is the health promotion in all of this?  The very basic building blocks of good health they are being taught are not allowed or provided for them.  This disconnect is a recipe for health disaster not a model to illustrate health. 

       Let's teach by example  Walk the walk. Practice what is preached.  

      Anxiety, depression and suicide are high among our young people, yet we continue to throw more and more at them.  The already high cost of schooling continues to rise. Many have to work numerous hours in addition to their school hours in order to pay for it.  As if the cost of schooling isn't high enough, we add on top of that, expensive equipment, books and extras which pushes that bar even higher. We overload their days of school -- the exams, the reports, labs, outreaches, internships...the list goes on.  Work harder. Longer hours. Higher costs.  All this work, which must be accomplished at hyper speeds, increasing as fast as possible -- promotes health how?? 

     How about employers?  What are they doing to promote health and well-being in their business?  Healthy employees (physically healthy as well as mentally healthy) earn bigger profits for their companies than those who are constantly ill.  Investing in your employees' health (mental and physical) today, will increase your bottom line tomorrow. (I realize there are companies who do this and kudos to them, but they are in the minority).  

     How about employers of these students who are already dealing with mental health issues plus unhealthy lifestyles, overloaded workloads forced upon them by their schools, combined with stress of increasing education -- are they understanding of all a student goes through?  How about understanding even a fraction of what these students go through?

     Are people who deal with these businesses where these students work, aware?  

         It's beyond the time both sides come together.  Those parallel lines of talking about it and "action" need to change to intersecting lines.  Now is the time.  

   Just in case you feel you don't have time for this or it will ruin your business, your classroom, your school or your church, just remember, mental illness does not discriminate. Tomorrow it may be you or your family member that is facing mental illness.  None of us are immune.  

       Talk talk talk + more work + no action = more anxiety
        
        Enough already.  Our current model is not working.          

        Mental Illness

     We HAVE to do better.  Our families, our friends, our employees, our co workers -- all deserve better.  

         Kudos to all of you who struggle with mental illness every single day.  You deserve better.

                     Hoping for 

​                                Balance......despite the chaos!
   

     Parts one and two of this series discussed thee importance of nutrition.
     Part three discussed further beneficial findings.
     Part four discussed the dangers of aspartame and other artificial sweeteners.
   
     In part five, remaining areas of concern.

      Chemicals, whether on food, in food, in medications, in my environment or home, tend to be of significant aggravation to me.  Avoidance of all these "extras" is the best plan.

      Unfortunately, it's practically impossible to avoid all chemicals, but the choice to make a conscious effort is the first step.

       A topic that is rather controversial, but one which must be thoroughly investigated by a third party with no interest (financial or other),  is the area of vaccines.  I am by no means an "anti vaxxer" and do realize, many have practically wiped out various, diseases.  Polio comes to mind here, but there are others.

      I do find it a tad suspicious though, if they're all so good with no issues or concerns, why vaccine companies do not want any further testing etc.  It seems to me, if I KNEW something to be true and right, I would not be concerned with anyone testing and deciding for themselves.  

     As anyone with these illnesses (CFS, Fibro etc.) know, we have a very low threshold to, well, just about everything.   Every day things that don't bother healthy folks, cause debilitating reactions with us.  Things like, light, sound, foods, chemicals, temperature....can bring us crashing down.  You can imagine then, how much more so for things we put into our bodies. I for one, would really like to know the truth about what is in them and what, if anything, they will do to my body and my condition.  

      The fact vaccine companies et al are so against further, non biased investigations is a huge red flag for me.  If everything is ok, then what is their concern?

     Finally though, there is an investigative documentary into this very topic.  It investigates all angles of vaccines and is made in consultation with many doctors and experts in this area.  

      This documentary entitled (this is an affiliate link) "The Truth About Vaccines" will  be released April 12, 2017 -- the waiting is so hard!  

     Until then, you can catch a FREE trailer of the documentary, here .

     We all need to be informed so we can make the best choices for our family.

      Staying informed, so we can keep 

                        Balance....despite the Chaos!          
      

                I was going to entitle this post "The Dangers of Aspartame" but changed it to include all artificial sweeteners.  I know aspartame is classified as safe under the FDA, but truly there have been so many things over the years labelled safe initially, only to be found extremely dangerous down the road. Thalidomide and asbestos come to mind but there are many, many more.        

      As I mentioned in a previous post, I used to use aspartame in my coffee. As well, whenever I could, I opted for the "sugar free" variety of everything. After all, reducing sugar was the goal and aspartame was "safe" so it was a win win situation. Right?  

     Wrong.  

      I wish I knew then what I know now, without having had to learn it first- hand at the expense of my health.  Very expensive lesson (and I'm not talking expensive as in monetary value here).

   My own personal experience using this FDA "approved" substance together with the many other "approved-today-oops-dangerous-after-all-tomorrow" things, have left me extremely skeptical, especially of all sweeteners. I hear sweetener "A" has been tested and is safe or Sweetener XYZ is a natural substance and therefore safe and my radar goes off.  To me, it's just not worth the risk of consuming it only to find out later on it's caused me another health issue.     There are so many "things" in our foods these days, sometimes lurking under another, unrecognizable name, that I try to eat a whole foods only diet (well as whole as one can get these days).
​  
    When I started to look further into the whole aspartame thing,  I was shocked at the sheer number of products we consume which contain aspartame or other artificial sweetener. 

   Items like (but not limited to):

•  diet soda
•  flavoured waters
•  drink powders
• anything marked "sugar-free" It has to get its sweetness from somewhere and if it isn't from sugar, it's more often than not, something artificial.  
• sugar-free candies
• chewable vitamins (children's vitamins!)
• chewing gum (sugar free)
• some over-the-counter medicines (like cough drops, cough syrups)
• some prescription medicines (I was shocked to see my husband's migraine medication contained it, especially when headaches are a known side-effect of aspartame)
• frozen desserts
• some yogurt 
• some puddings
• some condiments and sauces

    
     The list goes of products goes on and on (One list indicated it's in as many as SIX THOUSAND different products!).  The take away thought here is, we MUST become label readers.  Better yet, buying things that don't require a label are even better.  

      Even though the FDA itself lists 92 known side effects of aspartame ingestion, it's still on the market today.  

     Sweet Misery A Poisoned World (found here) is an EXCELLENT, must-see, documentary about aspartame. It provides an in-depth look into many aspects of Aspartame, starting from its very beginnings.  Many experts, such as Drs., Specialists and Attorneys as well as a former FDA Investigator are interviewed.  Each one of them gives an amazing, many times shocking, account of all that went into getting Aspartame approved and on the market. It's quite disturbing actually.  There's also interviews with aspartame victims and what they went through.  Together, they all uncover so much and it was a real, eye-opener for me.  

      Yes, it was an expensive lesson for me to learn and it is my hope to keep as many people as possible from going through it too. 

                        Balance.....despite the chaos!
      

       With a diagnosis and plan to help me move forward in hand, I wondered -- Is there anything further I can do??

      The internet was an invaluable resource both for info and for connecting with others who dealt with the same conditions..   (For those of you newly diagnosed, I would suggest joining some of the online support groups, talk to fellow sufferers for ideas, suggestions etc., what has worked for them and what has not.  It's a great place to start and they usually have great suggestions.)

       It was in one such group, I was directed to the work of Dr. Sarah Myhill.  She is a Physician in the UK and has been treating people with ME, since the 1980s.

         I promptly visited her site and started to read, soaking it up as I went.

       From the beginning sentence, it was evident she knows ME and knows it extremely well.  There was a plethora of info, which took some getting through (especially with the brain fog in full force), but everything she'd written strongly resonated with me.  

       I eagerly made notes as I came upon things particularly on point with me (ie one of my symptoms).  I recorded her suggestion, whether that was a nutrient, a vitamin or other recommendation.  I plodded along, bit by bit, note by note, until I got through it all.  I marked the sections which were particularly relevant to me as I knew I'd want to return to read it over again. 
​
      Once through it all, I was armed with a list of  nutrients I was most likely deficient in.  I prefer to get as many nutrients from foods, rather than pills if possible because I've always had a sensitivity to pills (even vitamins). Once an issue happens (ie hives), that's it.... I'll never be able to take that pill again.  Not ever for those pesky hives will reappear.  For this reason, getting the nutrients and vitamins from food sources is always my first choice.  This is not always possible of course and I do use supplements, but only after exhausting food choices first.   

     From these notes, I once again started researching for the foods highest in those particular nutrients, which I also recorded.  Nutrient by nutrient, vitamin by vitamin, until I had an extensive list full of food sources highest in my missing nutrients. I then checked those foods against the foods the homeopath and naturopath said I could and couldn't have.  When I was done, I was left with a list of nutrients and vitamins I was deficient in, the main symptom(s) that deficiency caused and the foods highest in those nutrients which I was able to have.

      This list served as an invaluable resource for me as I could reference it from particular symptom (eg., if I was having a lot of pain, which nutrients/foods would be best for that).  It continues to this day to be helpful and I refer to it often.

        I must admit, the new way of eating from the homeopath and naturopath was challenging enough.  However, trying to incorporate these things on top of it all, made it extremely challenging.  Many of these foods I did not care for, which made the challenge seem almost impossible.

     For the vitamins not available to me in the form of food, I resorted to supplements.  I used only one at a time for a few weeks before adding in another one.  This allowed me to tell if it was actually working, how well it was working and if I could tolerate it without any side effects.  Nothing worse than taking a few (or even two) supplements and not knowing which one is working or which one is causing the hives.   When I was satisfied it was ok, I'd add in the next one and continue on down the line.

       It could have been overwhelming, but as I was learning, baby steps, one at a time and not beating myself up for failures, was the only way to go.

      Little by little, I learned to add in more of these things.  I learned how to cover two, three or four symptoms and use as many foods all in one meal.   It was a real bonus when one food would cover several issues, especially if it was a food I wasn't particularly fond of.  It was a sharp learning curve at first, but one I was determined to stick with.

       As I continued to incorporate these, I noticed, even further improvements.  Still not cured, but well on my way to feeling much better.

        Moving forward in order to keep the...

                        Balance.....despite the Chaos