As I mentioned in my previous post,

I've found a new practitioner.   Many

things about these Doctors caught

my interest which ultimately

convinced me to ​give them a try.   

                     



                            For instance: 

• They classify themselves as holistic chiropractors  
• Their thoughts on diet line up perfectly with my current diet which is working very well for me
• They had a bit of a rough journey with their own health so am hoping this translates into understanding of ME

     
      I am a bit concerned with their stance on exercise, but I guess I'll cross that bridge when I get to it.  

    I eagerly returned to their office, to obtain the results from my scans.  This appointment wasn't quite as long as the intake one, but still very thorough. 

​     As expected, things were a mess.  It was actually refreshing to see on paper, how I feel.  This may not be huge for many, but with ME, having something show up on a test is a reason to celebrate.  Many parts of my autonomic nervous system were out of whack.  My spine was extremely out of alignment.   

    So there you have it folks.  Lots of work ahead of me but I am excited to see if it brings any improvement to my symptoms!!  

                   As Always ..

                                  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!

    
     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!

     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!
   

                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!