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!