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!

    

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!​

       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!

   

    

     
​

       We have recently celebrated the Thanksgiving Holiday here in Canada which is a time to reflect on the things we are thankful for.  While I wasn't able to cook the traditional Thanksgiving Dinner for my family (which consists of turkey, stuffing, potatoes, gravy and pumpkin pies), I was thankful we were able to go out together as a family to a restaurant.  I also took some time to reflect on other things I am grateful for. 

Here is my list of things I am thankful for:

1)  For an early diagnosis.  It only 10 months. In the world of M.E., this is a very quick diagnosis as many go years or decades, unable to receive any diagnosis.   

2)    To receive a diagnosis.   At the time, I didn't think expecting a doctor to offer a diagnosis was expecting too much.  One gets sick, they go to the Dr. and the Dr. tells them what is wrong with them.  That's not the case with M.E. though.  Many times, people actually go backwards as their doctors don't even believe they are sick.  They are told it's all in their heads and then given advice to do things which will not help them and quite often make them more ill. Hearing these reports, as well as my own experiences with doctors since my initial diagnosis,  I now realize receiving a diagnosis is a major accomplishment.

3) For a Dr. who believed M.E. is a real illness, had extensive knowledge about it but also be one of the top M.E. specialists in our country. He not only got it, believed in it but has written about it.

4)  To live in Canada where universal healthcare enabled me to visit so many doctors, specialists and have so many tests done, all at no cost to me and no 'questions' or disputes from insurance companies on whether these tests and/or specialists were necessary.  When one doctor needed a test completed or for me to see a certain specialist a requisition was all I needed and off I went.

5) My on-line M.E. groups and friends who, unfortunately, also suffer from this dreadful disease.  They willingly share info, what has worked for them, what hasn't and have suggestions of things to try.  Sharing this info is nice of anyone, but when one has the debilitating fatigue and other issues of M.E., using your already limited energies to help others is exceptional.

6)  The friendships I've made.

7)  Dr. Sarah Myhill, her work with M.E., the M.E. community and the info she shares on her site.  When I fist became ill with M.E./CFS, an on-line acquaintance pointed me in the direction of Dr. Myhill's site and it was invaluable.  Her information and suggestions were a large contribution to the improvements I have made over my journey.

8) A supportive family.  Without my husband and children believing in me, supporting me and generally picking up the slack, I would not have been able to make the improvements I have.  They gave me the time to rest, to research and implement various things.  They supported me through the things that didn't work and rejoiced at the ones that did -- no matter how small the improvement.  

9)  The improvements I have made.  I am at 50 - 60% of my pre-illness state but considering I was at around 2% when M.E. first hit, I've made considerable improvement.

10)  The other positive life-style changes I've had to make. 

      It is easy to focus on all this illness takes from us -- and lets' be crystal clear, it does rob us of a lot -- however shifting our focus can be very helpful.     

​         What are some things you are thankful for?

                         Shifting focus to remain

                                    Balanced....despite the chaos!
​

       With a diagnosis and plan to help me move forward in hand, I wondered -- Is there anything further I can do??

      The internet was an invaluable resource both for info and for connecting with others who dealt with the same conditions..   (For those of you newly diagnosed, I would suggest joining some of the online support groups, talk to fellow sufferers for ideas, suggestions etc., what has worked for them and what has not.  It's a great place to start and they usually have great suggestions.)

       It was in one such group, I was directed to the work of Dr. Sarah Myhill.  She is a Physician in the UK and has been treating people with ME, since the 1980s.

         I promptly visited her site and started to read, soaking it up as I went.

       From the beginning sentence, it was evident she knows ME and knows it extremely well.  There was a plethora of info, which took some getting through (especially with the brain fog in full force), but everything she'd written strongly resonated with me.  

       I eagerly made notes as I came upon things particularly on point with me (ie one of my symptoms).  I recorded her suggestion, whether that was a nutrient, a vitamin or other recommendation.  I plodded along, bit by bit, note by note, until I got through it all.  I marked the sections which were particularly relevant to me as I knew I'd want to return to read it over again. 
​
      Once through it all, I was armed with a list of  nutrients I was most likely deficient in.  I prefer to get as many nutrients from foods, rather than pills if possible because I've always had a sensitivity to pills (even vitamins). Once an issue happens (ie hives), that's it.... I'll never be able to take that pill again.  Not ever for those pesky hives will reappear.  For this reason, getting the nutrients and vitamins from food sources is always my first choice.  This is not always possible of course and I do use supplements, but only after exhausting food choices first.   

     From these notes, I once again started researching for the foods highest in those particular nutrients, which I also recorded.  Nutrient by nutrient, vitamin by vitamin, until I had an extensive list full of food sources highest in my missing nutrients. I then checked those foods against the foods the homeopath and naturopath said I could and couldn't have.  When I was done, I was left with a list of nutrients and vitamins I was deficient in, the main symptom(s) that deficiency caused and the foods highest in those nutrients which I was able to have.

      This list served as an invaluable resource for me as I could reference it from particular symptom (eg., if I was having a lot of pain, which nutrients/foods would be best for that).  It continues to this day to be helpful and I refer to it often.

        I must admit, the new way of eating from the homeopath and naturopath was challenging enough.  However, trying to incorporate these things on top of it all, made it extremely challenging.  Many of these foods I did not care for, which made the challenge seem almost impossible.

     For the vitamins not available to me in the form of food, I resorted to supplements.  I used only one at a time for a few weeks before adding in another one.  This allowed me to tell if it was actually working, how well it was working and if I could tolerate it without any side effects.  Nothing worse than taking a few (or even two) supplements and not knowing which one is working or which one is causing the hives.   When I was satisfied it was ok, I'd add in the next one and continue on down the line.

       It could have been overwhelming, but as I was learning, baby steps, one at a time and not beating myself up for failures, was the only way to go.

      Little by little, I learned to add in more of these things.  I learned how to cover two, three or four symptoms and use as many foods all in one meal.   It was a real bonus when one food would cover several issues, especially if it was a food I wasn't particularly fond of.  It was a sharp learning curve at first, but one I was determined to stick with.

       As I continued to incorporate these, I noticed, even further improvements.  Still not cured, but well on my way to feeling much better.

        Moving forward in order to keep the...

                        Balance.....despite the Chaos

(nb I am really anxious to get to the post about Aspartame, the dangers of it and other artificial sweeteners as I feel it was one of the biggest contributors to my health issues. I will be happy if I can prevent one person from becoming sick from it.  I wish someone had taken the time to warn me, before I got sick.  However, in the name of keeping things organized here, I will finish my post on the importance of proper nutrition.)

    Immediately after being diagnosed, I visited the only person I knew in real life who had the same illness.  We talked a lot about what had worked and not worked for her. Many things under the "had worked" category involved alternative methods and practitioners, namely a homeopath and naturopath.

     I must admit, I was more than a bit skeptical (ask most Doctors and they'll tell you these guys are a waste of money), but figured I'd exhausted all traditional routes (the specialist had told me this much), so what did I have to lose?   I might as well give it a try and if I didn't notice immediate improvement in some area or on some level, I could (and would) stop going before I spent a small fortune.

       I visited the homeopath and she referred me to a naturopath.  The two of them worked together in order to get my issues straightened out.  One of the biggest areas they felt, were my nutritional requirements.

      I had live blood analysis done and was once again shocked at what they could see -- things I had not told them (because I didn't feel it was important and because after years of trying to get help from mainstream medicine with no success, I had given up telling any of them.  No amount of explanation ever worked, nobody ever got it so I decided I would never mention it again.)  The appointments that followed, were not rushed.  There was a lot of time for me to talk and explain in detail, all of my issues.  My words, together with the live blood analysis results and their determinations, enabled them to put together a treatment plan for me.
     
      This plan included:

• discovering which nutrients I was deficient in
• uncovering other issues, such as my body not absorbing nutrients properly
• implmenting a nutritional plan
• implementing a supplement plan 

        They felt the most important issued to address was the absorbing issue (or should I say non absorbing issue).  The naturopath explained to me exactly what was going on with my body and as she spoke,  described exactly how it felt to me.  So much so, it was almost eerie - like she was actually experiencing it herself.   (This was the thing I mentioned above, the thing I had decided to never mention to another Dr.  Not only did she get it, in explicit, accurate detail, she did so from absolutely no explanation from me!  Did I mention it felt, eerie?).  

     Cautiously, I implemented their first suggestion and immediately, I noticed an improvement.  Not cured, but, but a noticeable marked improvement.  Baby steps forward, but at least it was forward.

       Another area they worked on me was with diet.  Can you say complete overhaul??

• Pasta had to go! (noooo....loved pasta -- it was my all-time fave!)
• Milk had to go! (again...Nooo... loved loved loved Milk)
• All things white (flour, pasta, potatoes, bread...everything white had to go)
• Sugar had to go (couldn't even begin to process this one)
• Artificial sweeteners had to go (had already implemented this one -- one thing already crossed off the list. Yay me!  )
• All processed food had to go
• Coffee had to go (Nooo...not coffee too :( )
• Fruit juice had to go (I was ok with this, not really a fruit juice drinker)

      Man, it was feeling like there was nothing left to eat.  

       I suggested she go over the things that were ok and the list looked something like this:

• all the green leafy vegetables I wanted
• all vegetables except corn
• fruits
• water, lots of high quality water
• lean meats such as beef, chicken, turkey
• sprouted grain bread
• sesame seeds
• pumpkin seeds
• coconut or olive oil
• pasta made from Kamut flour (tried it.  Blech! 'Nuff said)

     It didn't look like an over abundant list to me and one that was going to take a lot to get used of.  It would be learning to eat and cook, all over again. All my staples were gone, nothing familiar left and every single meal was going to be a challenge.

       I wanted my health to improve though and thus was willing to do whatever it took.   I reminded myself, I didn't have to stick with it, if I found it didn't work or show some improvement.

      On board I jumped and noticed immediately, improvements.  

     Who knew?  Not me, that's for sure.  Not what I expected but results I couldn't ignore.  
  
             Onward and upward in order to keep...

                         Balance....despite the Chaos!

                         (up next:  What else can I do?)

     Proper Nutrition is an extremely important factor on the road to improved health and well-being and therefore much too large to properly cover its many aspects in just one post. Therefore, it will be discussed over a series of posts. This is part one.

    Before I became ill, I thought my diet was very healthy.  I mean, there's always room for improvement, no matter what, but I felt for the most part it was healthy.  I liked junk food (helllloooo chocolate!!), but only as an "extra" in moderation.  I was active, in good health, had a lot of energy and therefore comfortable with the way I ate.  

    My mornings started with a couple cups of coffee.  Double double as we say (two cream, two teaspoons of sugar) and I had two cups.  For several years, I used artificial sweeteners (aspartame) instead of sugar, you know, because sugar isn't good for us and these alternatives are a healthy substitution (or so we are told).  

     Artificial sweeteners, however,  proved to be a colossal mistake (more on this in a moment).

      That was my breakfast.  No food, just coffee.

      Lunch was lunch -- usually a sandwich of some sort and a glass of milk.

      Dinner consisted of lots of pasta (loved pasta!!).  Not only did I love pasta, but I was trying to incorporate meatless meals into my diet.  After all, meat we were/are told is taboo, so this was a win-win situation for me.  My much-loved pasta, a healthy alternative, meatless meal.  

     Other nights, it would be meat and vegetables or something frozen which only required heating.  Here as well, I opted for the "healthy" foods too like frozen chicken fingers, frozen dinners etc.  (spoiler alert: I was wrong!)

     My beverage of choice, every night, was two to three large glasses of milk (after all, milk is healthy...those commercials on tv tell us so).  I'd been a life-long milk drinker and had always drank a lot of it.

     I very rarely had desserts.  They were reserved for special occasions only.  I was contributing to my healthy eating by avoiding regular desserts.  

     Supper was followed by another couple of cups of coffee, double double again and when I was using sweeteners, it was 4 - 6 tablets, depending on the size and strength of the cup of coffee.    Sometimes later on in the evening or on the weekend, my husband and I would enjoy a coffee or two (always double double) at the local coffee shop.

     I didn't regularly consume potoato chips, or sugary snack foods (again only on a rare occasions).  

     I honestly felt this was a healthy approach.       

       Yay me!      

     Enter chronic, debilitating, illness.  All over pain, brain fog, fatigue, weakness -- all of them extreme.  In addition, there was a lot of weight gain and a terrible chest cold with excessive cough, one I could not shake for several months. The list of symptoms was endless.

        As I've written elsewhere in this blog about what I went through trying to get diagnosed, I won't write about it again.  However, when I finally was diagnosed, the Dr. told me nothing further could be done and basically, this was the new me.  

     My stubbornness served me well here as I refused to accept this as fact.  I had young children to care for, a whole life ahead of me and needed to improve to be the best version of me I could possibly be.

    This put me on a quest to search out information on my condition. I was hungry for information, any information that would help me improve. Unfortunately, at this point, I was too brain-fogged to do much of anything let alone retain information I'd read.  Thankfully, my first discovery, which was the dangers of aspartame and other artificial sweeteners, did not require much effort to uncover. 

     There it was, in black and white, the dangers and side effects of them.  Article after article, all listing the same things with wide-spread pain being one of them.  

      Immediately,  I stopped putting aspartame in my coffee and was shocked at the immediate decrease of pain.  It wasn't completely gone, but a very palpable difference.  (I will go into a lot more detail about Aspartame and artificial sweeteners in a separate, future blog post and will link here when it is up.  Aspartame is such a large topic and deserves its own post).  

     This improvement, spurred me on to see what else I could uncover and implement, all in the name of improving my health.  With each step of improvement, no matter how small, came an increase in the amount of info I could retain and implement.  In the beginning, the steps were small but an improvement nonetheless.  

      Stay tuned for part 2 of this series!

        Until then, remember to strive for

                         Balance....despite the chaos!
        

​
Don't do it!

 
    In the name of moving forward, don't do it!   


     Easier said than done, I know!



   However, that being said,  don't get caught up in "The Blame Game". 


 
    When things go wrong or have gone wrong, the tendency is to play "The Blame Game".


 
       That list of people we blame for our situation can--- and  quite often does-- include everyone from the mailman to ourselves and everyone in between.   Recently, I've even seen a certain Hollywood Celebrity blaming a certain politician for making her gain weight! OK then!!!  

​                  The should-haves / could haves / would haves/ if onlys ....

        It's a case of being caught on that proverbial, never-ending wheel.  Round and round it goes.  No beginning, no end, no way to get off.  

     Enter the blame game as we identify all kinds of things which have gone wrong and put us where we are.  

        Thoughts such as (but not limited to):

•       My parents should have done things differently......
•       The church should have reached out to me.....
•       I should have gotten that promotion.....
•       People should have helped me out more.....
•       If only I went to a different school.....
•       I should have done it this way.... 
•       The politician made me gain weight 

                               On and on it goes....

       and we become stuck on that wheel with no idea how to get off.  It's not that we don't want to get off, to move forward, because we do.  We just have no idea how to.

       Sound familiar?  I know it does for me.  

     Now, these reasons may very well be true (all except for the politician causing the celebrity to gain weight.  I still can't get over that one lol).  

     We shouldn't deny these things were done to us.  We shouldn't minimize their effect on us.  On the contrary.  It's important for us to acknowledge these things,  the wrongs that were done to us and the emotions that followed.  

     However, it's equally as important, if not more important to move forward beyond them. Forward we must go.   After all, getting stuck in the continual rut of these hurts, provides absolutely no benefit to us and in fact pulls us down causing further decline.    Yes, they were hurtful.  Yes, I worked so hard and should have gotten that promotion.  Yes, the church should have least called to see how I was.  Yes, all these things are absolutely true, however, dwelling on them:

• does not change the past
• does not undo those things
• does not improve my situation
• does not help me when I am sick
• does not make my load any lighter or easier to carry.
• does not cause the people who hurt me, to be sorry or concerned they caused the hurt in the first place (they still don't care!!)

  
    It makes it worse by upsetting us all over again (can you say round two?).  By continuing to let it bother us, it lets them win even further.  It lets them steal our joy and it wastes our energy  (energy which could be better used on moving forward.)

     We need to take responsibility for ourselves.  We need to turn our negatives into positives.  That first step forward is usually the hardest, no matter how small it is, but necessary.  

      The how we do this, looks different for everyone.  Perhaps we need to take a step back from the friendship, group or relationship until we can work through it.  Perhaps we need to put some boundaries in place.  Perhaps we can help others who were in our situation -- knowing how it felt to be there and not wanting others to have to experience what we did.  Perhaps we can see the non-promotion is a sign it's time to look for a new job (who knows, a better position may be on our doorstep and without the knock of not getting the promotion, we'd never had the inkling to even look).

      Whatever our situation is, while it is not be the situation of choice, we must learn to move forward through it!  

      What are some ways you've found helpful in this endeavour?  

     Moving forward to keep the 

                              Balance....despite the chaos!!