Wow -- I haven't been here in awhile -- sorry for my absence!  

     I've been continuing to work on ME -- reducing the severity of symptoms. 

      I've added in acupuncture to my treatment plan.  This has provided improvement in many areas.

       I've also been continuing care with the chiropractors and have experienced significant improvements.  Some of them have been gradual over time, but an adjustment a couple of weeks ago, provided significant improvement which was immediately noticeable. 

       It was nothing short of amazing!!

       This will need to be an ongoing, continual improvement, but I am extremely encouraged and hopeful.  Stay tuned! 

      Other than this, I've been trying to maneuver through all the covid related stuff going on in the rest of the world, just like everyone else.  

       That's all for now.  Hope everyone has been keeping ok!


           Keeping the

                               Balance....despite the chaos!

    

  May is ME/CFS Awareness Month

There is a lot of support for the various Awareness Days.  

Mismatched sock day, Pink tee shirt day, Purple Day.  Whole companies get involved with fundraising -- "hashtag day", restaurants donating so much per food item sold in support of various diseases. 

Whole offices get involved, holding fundraising events and then posing beside large cheques or a painted thermometer on a wall showing amounts raised. Towns proclaim days or light up in the colours in representation. On social media, individuals share awareness memes, change their profile picture, "like" or "love" awareness posts.  

Yet, when it comes to ME/CFS, the world pretty much goes silent.  No corporate fundraising.  Individuals do not change their profile pics, share awareness memes or even acknowledge awareness posts by leaving a comment or even clicking "like". 

This silence is deafening while the apathy speaks volumes.  The stigma attached to ME/CFS is huge and very isolating.  

ME/CFS is not rare.  There are more people living with ME than there are with MS, Alzheimer's, Parkinson's and Epilepsy COMBINED.  These diseases are familiar names.  However, mention ME/CFS  and it's met with blank stares or  comments such as "Ya, I get tired too" (which shows how little is understood and the huge need for awareness of what ME/CFS actually is.) 

This is concerning, given the number of people with ME/CFS is on the rise, the cause is unknown, there is no cure, no treatment, no Drs. to treat it (and most Drs. are so unaware of it, they prescribe therapies which cause more, permanent harm), it's barely, if at all, taught in our medical schools, our Cdn. gov't spends nothing on research into it, there is a genetic component (meaning if it's in your family, there is a greater chance for other family members to get it). 

ME is a spectrum disease with 25% being bed-bound or housebound and 75% being too ill to work or attend school. The fatigue experienced has been compared to what cancer patients go through while undergoing chemo, yet many with ME live like that for years or decades unable to get a diagnosis.  Some countries remove children from their homes and put them in psychiatric hospitals, forcing them into the dangerous therapies which make them worse or even cause death.

This post is not seeking sympathy but rather to raise awareness of what ME actually is and how debilitating it can be.  It is difficult to be this transparent and yet, when newly diagnosed people reach out because of something shared, it worthwhile 
  
ME is not being lazy, just tired or un-motivated.  It is not be cured simply by changing one's diet, getting some exercise, fresh air, a new hair do or pushing your way through.  It's not "all in one's head, it's not a mental illness and sending patients down this road makes ME patients more ill while wasting valuable resources that could be better used by those who do have mental illness. 

May is ME/CFS awareness month.

               Keeping the

                               Balance....despite the chaos!

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! 

   Coming soon -- stay tuned!

       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!






​