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!

    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!

​       

        





​

     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!
   

     It's time to take some of my own advice.  Things have been less than ideal here for quite some time and they need to change.  My health is taking a further hit and as I've learned in the past, I and I alone need to take control of the situation in order to turn it around.  What I allow is what will continue.

In order to change things here, I will need to:

     1) Remove toxic people and relationships from my life.

     2)  Set boundaries...and stick to them.

     3)  Take steps, no matter how small, toward the change I want.

     4)  Not let others make me feel guilty because I choose to take care of me.

     5)  Remember that a healthier me is able to help others while  an unhealthy
          me is less able to help others.  

     It truly is all about balance.  Keeping Balance....despite the chaos!

     I've been bending myself a lot lately.  Compromising myself in order to fit others' visions of who they think I should be.  It's as if they think by ignoring my illness, not asking about it etc., it will all just go away.

      WRONG!

     I am beyond tired of this and it's going to stop, effective today.

     Continuing to Keep Balance ... despite the Chaos!

    Do you ever feel people only focus on the things you can't do instead of the things you can do?  This is what I am struggling with at the moment and one of the things that frustrates me the most.

      They only see the things I do not take part in.  The worst part of it is, they think I choose to not be involved simply because I can't be bothered.  That I'm leaving the work up to everyone else.  A huge degree of intense laziness.

       If they only knew!

        If they only knew how difficult it is for me to do the things I can do!  To healthy folk, the things I can do are nothing.  Things they do every day without thinking but for me, they are monumental!

        If only they knew how far I have come from the early days of these illnesses. Back then, I was mostly bedridden.  When not bedridden then most definitely house-bound. I could not take care of my family -- no cooking, no laundry....nothing.  I couldn't even take care of myself.  I was so brain-fogged I did not know my own phone number.  I spent days and sometimes months, in bed because I did not have the energy to do anything else. 

        I've fought long and hard to get where I am today.  Research was slow because I could only absorb so much.  Retaining that info was even worse.  Implementing it, even slower.  Sometimes that particular thing did not work so it was back to the drawing board.  More research.  More retaining.  More implementing.  Sometimes I'd hit the jackpot and find something that worked which enabled me to move forward, even though it was only a baby step at best.  The next time, I'd not be so fortunate and would again have to return to the drawing board.  Intertwined in there were crashes, many crashes.   Periods of total exhaustion and more bed rest.  Yes, one step forward, three or ten backward.  

     If they only knew!
​
     I worked hard and diligently to improve myself.  There was no outside help.  (A meal, or some other sort of practical help would have been so very welcome, but none were forthcoming).  Some of that moving forward came in the form of actual improvement while other improvement came in learning ways to extend the limited energy I had.  It's a a long, up-hill battle and I continue to fight every single day to maintain the recovery I have gained and the health that I have.  A lot of my current level of daily abilities entails me knowing my limitations and staying well within them.

     Working with, and keeping within these strict confines, enables me to do so much more than I once could.  It has allowed me to improve a lot.  Venturing outside of these confines, would land me back to where I once was, very quickly. I've had to learn this the hard way but know it beyond a shadow of a doubt.   Even working within these confines and limitations, but I am now able to have some level of normal life or at least some appearance of normal life.   This appearance of normal life is all that many see, unfortunately.  They don't see all the tweaking and planning I've had to do in order to go out for the afternoon.  No, they only see the fact I'm out. Tunnel vision at its best. 

      With all this planning and careful implementation, I'm now able to look after my family.  It's on a limited basis, but it's better than it once was.  I am able to contribute to our family's income through a small business I have.  I've learned to work this in and around the confines of my limitations.  I can have a basic level social life.   These events alone though stretch me to my maximum outer limits.  I can't do anything more and unfortunately, this is what people focus on.  They only see the extras I can't do instead of the things I can do.  

​     If they only knew how far I have come they may just realize how hard I work to keep the

​                                   Balance...despite the chaos!