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!

      I'm always on the lookout for new treatment methodologies.  Don't get me wrong, I'd like nothing better than to go to a regular doctor, have him/her run some tests, tell me I have ME then prescribe the standard ME treatment plan -- you know, the one that has been arrived at by research. 

     Unfortunately, that option isn't available to those of us with ME.  If we're lucky, our Dr. may have heard of ME, but that's where it stops.  They usually then break into a mini lecture on what it is - which really means what they think it is, not what it actually is.  Their version is quite often full of wrong information and harmful treatments which make us worse.  BTDT and noooo thanks, I am not going there again.   I learned this the hard way.

    In almost all other illnesses (or perhaps all illnesses), having to educate the Dr. on what the disease is, is unheard of.  Imagine having heart disease and having to explain to the Dr., what the heart is, how it's supposed to work, what heart disease actually is, why/how your heart isn't working and convince him/her it's actually a real disease.  Literature must be gathered then taken in  to backup the claim -- not too much literature because it will put the Dr. off.  Not too little information because there needs to be enough to actually educate him/her.  Given it's such a complex disease, this initial 'education' must be on a basic level with hopes it will lead them to look into it further.

    You can spend hours collecting such info and there's no guarantee they will actually read it.  Many times, it ends up in their garbage can.  Their time is important after all, your time, not so much apparently.

     This treatment is demoralizing to say the least, especially when it happens time after time, Dr. after Dr.

     Even if you are fortunate enough to find a Dr. who believes in heart disease or better yet knows about it, there isn't any real treatment anyway.

     This is the way it is with ME.  We are therefore left to research our illness on our own and hopefully come up with things that will help.  Seeing as there is no cure available YET, symptom control is where it's at for now.  Reducing the severity of symptoms is better than nothing.  

      There are some helpful books.   Other ME sufferers are a wealth of information, so it's good to connect those folks.  There are lots of websites with helpful information. 

     There are also many 'alternative' health practitioners which help reduce the severity.  This can run into a lot of money though, with no guarantee of any improvement.  

     Enter my newest practitioner -- a chiropractor.  This husband and wife team does not seem like a 'regular chiropractor' (or what I think of when I hear chiropractor).  The intake assessment appointment alone was at least an hour, probably longer.  In addition to my full health-history, which they went over with me in depth, they did a several different tests, including a thermal scan of my spine to see the state of my autonomic nervous system.  I was most interested (and excited!) in this test as I've read (whether it's true or not, we're not sure -- we're still waitin' on that research too) our autonomic nervous system is out of sync with our brain.  

     I'm very anxious to see what my scans show, the treatment plan and most important, if this helps reduce the severity of some of my symptoms.  I know this will not cure ME, but at this point dealing with the symptoms is the best we can do.  Any reduction in severity is a help.  

     Stay tuned!  I'll share the details, results of my scans and the progress of my treatment.  
 
                       Seeking...

                                Balance....despite the chaos!​

The amount of funding for ME research in Canada is now zero. 

This is down from last year's whopping .11 per patient.  Other chronic illness are funded (eg. Parkinson's funding is $428.16 per patient) so why is ME funding non-existent?  It's difficult to understand why our government continues to ignore us, given even the basic facts:

• ME is extremely debilitating
• There are 580,000 Canadians living with ME 
• ​More people are living with ME than there are living with Multiple Sclerosis, Alzheimer's, Parkinson's, Epilepsy and AIDS combined. 
• ME isn't going to magically disappear.  Numbers are continuing to grow.
• More info here 

It's not for  lack of trying.  Many within the ME community have tried extensively to raise this concern and awareness with our elected government officials with no success. 

Shameful.  

I have personally tried to arrange meetings with my MP and other than her standard auto-reply, I have heard nothing back.  I think these folks forget they were elected to represent their constituents -- all their constituents, not just the ones they feel are worthy.  

We have money to hand out for just about every other cause, but no help available for the folks who helped fund those very causes.  

This is totally unacceptable and our Canadian government needs to do better.

That said, I recently had the opportunity to take part in a Canadian University research study about ME.  It was conducted out of Laurentian University details here  and funded out of the pocket of these Scientists.  

Realizing ME patients are quite often too ill to leave their homes, these scientists, Andrew and Max, came to our homes to conduct the testing.  How cool is that?  They were wonderful guys all the way around.  They were knowledgeable about ME (this alone was refreshing! I didn't have to convince them ME was real or even educate them on it.  They knew! This hardly ever happens!).  They explained the testing process well, walked me through the requirements and were concerned throughout the testing time for my well-being.  After the testing was complete, they showed me my scans and explained what they saw.

A big thank you to Andrew, Max and Laurentian University!  Looking forward to following your research into this area!

Canadian Government -- please take note!

Andrew and Max preparing patient and setting up for testing in ME research study

    

                              Balance ...... despite the chaos! 

       Part 1

        Part 2



        From talking to other people with ME/CFS and Fibro, as well as my own research, I put together a team of alternative practitioners.  While none of these individually or collectively, completely healed me, they were able to address specific individual symptoms.  Unfortunately, there are no cures for ME/CFS and Fibro and most often, the best we can hope for is to control the symptoms as well as addressing other contributing factors.

   My 'team' consisted of the following practitioners:

Naturopath

      My Naturopath addressed many issues for me. 

      She provided me with live blood analyses, which addressed many issues.  Some of these issues had been ongoing for most of my life and while they had nothing to do with ME/CFS or Fibro, I was over the top to finally be able to address them.  She was the first one who 'got' how severe this problem was (I had been to many Drs. over the years and none of them could help me).

     Some ME/CFS symptoms also showed up in the live blood analyses, such as muscle pain, inflammation and dehydration and we were able to effectively address these. 

     
Homeopath

      My Homeopath worked in conjunction with my Naturopath and helped address concerns my Naturopath was unable to (and vice versa).  She spent several hours with me dealing with individual issues.  She made house calls when I was not well enough to go to her and was also available by phone, skype and email (if I had a question in between appointments).  These were fabulous services which allowed me to focus the bulk of my energy (what little I had) toward improving my health and not waste it on things like getting to/from appointments, trying to hurry through my issues in the few minutes traditional doctors offer or make my best guess when I had a question between appointments.  

      She also addressed diet, dehydration and helped with my self-care plan.  Actually, I should say devise one, put it into action and then made sure I stuck to it.  


Registered Massage Therapist

      I addressed this in a previous post so won't go into much detail here.  Suffice to say, this helped immensely with my pain and my Costochondritis. 
 

Others who also had ME/CFS and/or Fibro

     These folks were invaluable.  Most times, they'd experienced the same things I  was and were more than willing to help.  They'd make suggestions as to what worked and what didn't for them.  This saved me a ton of time and gave me a starting point so I could begin researching for myself.  

On-line sites

     Dr. Sarah Myhill and similar sites were also an immense help.  Fortunately, I was directed to her site early on in my illness journey (by fellow ME/CFS sufferers) and was able to implement her suggestions.  The earlier one can start these treatments, the better the outcome and this was true for me.
​       
          I am thankful for my 'team' and all the progress I have made.   Not healed, but much better than I was. 

       What type of things have you found to work well? 

             Moving forward to  ....         

                              Balance .....  Despite the Chaos!

   

    

     
​

Alternative Healing Methodologies -- Part 2 

Part 1 

     The pain from ME and Fibro, is horrific.  At its worst, it feels like all muscles are terribly sunburned.  This is accompanied by deep bone pain and the feeling of being stabbed all over my body by millions and millions of pins.  All at the same time.

     I must admit, initially I did not realize all of the benefits massage could provide.  I knew it would be relaxing as well as helping my sore aching muscles, but I didn't realize that was only the tip of the iceberg.  

     Before I go on, I do need to mention in my province, Registered Massage Therapists (RMT) are highly trained (at least 2200 classroom hours).  They take part in several outreach clinics in various settings during their training, they are thoroughly tested by the educating institution and must also successfully pass (with at least 70%)  extensive examinations (both practical and written) by the regulatory board.  To say they really know their stuff, is an understatement. 

     This is not the standard everywhere, unfortunately.  Some countries do not require any registration and training consists of very few hours. This type of massage is for relaxation purposes only. Some spas are like this too.   There is nothing wrong with this of course, as long as it's a relaxation massage you are after.  It's important to know the difference.   For my issues, I needed a health-care professional to be part of my healing team.  A full RMT.

     They are trained in all areas of the body and they do a full assessment before the first treatment.  They take your health history and then devise a personalized treatment plan.

      My RMT can tell where I hurt, just by the feel of my tissues.  This was a bit unnerving at first as I didn't have to tell her where I hurt -- she just knew!  

     For me, the areas she has helped are:    

     Lymphatic System -- ME affects my lymphatic system, big time.  Regular massage has helped decrease my swelling, which increases my mobility.  Love it!

      Muscles -- As mentioned earlier in this post, my muscles hurt a lot.  I can be in immense pain going into the massage and completely pain free leaving the massage.

      Costochondritis -  Complete relief and hopefully healing (this is an ongoing process).    Costochondritis affects the muscles in and around the ribs and is quite painful.  I could barely stand for more than a few minutes and it was continuing to get worse.  It's difficult to accurately describe, but suffice to say it  felt like gravity was pulling my chest down and trying to hold it up caused me to become short of breath.  After just a few minutes of standing, I'd be panting like I had been running.  I'd have to lay down frequently just to catch my breath.  It continued to worsen to the point I wondered if there was a problem with my lungs or perhaps I was having a heart attack.  

     In passing one day, I said to my RMT, "it feels like there's a tight jacket around my ribs preventing me from taking in a breath".  That's all she needed to hear and seemed to know  exactly what the problem was,  inviting me to get on the table so she could take a look.  I didn't really think massage would help this issue (and wasn't my reason for telling her in the first place), but I'm not one for turning  down a massage, so up on the table I got.    

     WOW!

      Even though my body and rib area did not feel sore, it felt like horrible bruises were already there when she started working on it -- and she was barely touching it!  She was shocked at how many knots were there, but she continued to gently work on it.  Not too far into it, she said she should stop for that day as I would feel it the next day (and I did!) but when I got up off the table -- I could BREATHE!!  

      It was shocking as well as amazing and I was so very thankful.  This was not a quick fix mind you, we've been working on it twice a month for five months now.  There is still a bit of tightness and soreness (ongoing part of ME and Fibro) but I feel we have it under control.    I am able to stand upright and breathe for longer periods of time, something I haven't been able to do for a long time.  Who knew being able to breathe would feel like such a luxury.  

     General well-being -- Massage helps relax me.  Sometimes I am sore the next day (think muscles that have been tight for a long time, suddenly relaxed) but day three is Ah-mazing!!    It helps me sleep better, improves my digestion and my total feeling of well being.

      I can't say enough about the healing benefits of massage, given by a professional, highly-trained, Registered Massage Therapist.  

         Relaxing and Healing in order to promote

                                     Balance....Despite the Chaos! 

    Part 1

    Part 2 -- Marvelous Massage

​     As I've shared in other areas of this blog, the traditional medical route did not work for me in my quest for healing from my illness.  This is what happens when you have illnesses that modern medicine knows next to nothing about.  Quite frankly, I am extremely thankful for the relative quick diagnosis I received, given how little is known about ME.

Because of this, I had no choice but to seek out alternative methodologies.  Some worked well, others not so well.  I will share in a series of posts the ones I found most helpful, addressing each in a separate post.  I will link up here as I go.   

     Stay tuned!

                         Keeping

                                 Balanced ..... Despite the Chaos!






​

     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!

    
     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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