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.
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          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!

   

    

     
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                I was going to entitle this post "The Dangers of Aspartame" but changed it to include all artificial sweeteners.  I know aspartame is classified as safe under the FDA, but truly there have been so many things over the years labelled safe initially, only to be found extremely dangerous down the road. Thalidomide and asbestos come to mind but there are many, many more.        

      As I mentioned in a previous post, I used to use aspartame in my coffee. As well, whenever I could, I opted for the "sugar free" variety of everything. After all, reducing sugar was the goal and aspartame was "safe" so it was a win win situation. Right?  

     Wrong.  

      I wish I knew then what I know now, without having had to learn it first- hand at the expense of my health.  Very expensive lesson (and I'm not talking expensive as in monetary value here).

   My own personal experience using this FDA "approved" substance together with the many other "approved-today-oops-dangerous-after-all-tomorrow" things, have left me extremely skeptical, especially of all sweeteners. I hear sweetener "A" has been tested and is safe or Sweetener XYZ is a natural substance and therefore safe and my radar goes off.  To me, it's just not worth the risk of consuming it only to find out later on it's caused me another health issue.     There are so many "things" in our foods these days, sometimes lurking under another, unrecognizable name, that I try to eat a whole foods only diet (well as whole as one can get these days).
​  
    When I started to look further into the whole aspartame thing,  I was shocked at the sheer number of products we consume which contain aspartame or other artificial sweetener. 

   Items like (but not limited to):

•  diet soda
•  flavoured waters
•  drink powders
• anything marked "sugar-free" It has to get its sweetness from somewhere and if it isn't from sugar, it's more often than not, something artificial.  
• sugar-free candies
• chewable vitamins (children's vitamins!)
• chewing gum (sugar free)
• some over-the-counter medicines (like cough drops, cough syrups)
• some prescription medicines (I was shocked to see my husband's migraine medication contained it, especially when headaches are a known side-effect of aspartame)
• frozen desserts
• some yogurt 
• some puddings
• some condiments and sauces

    
     The list goes of products goes on and on (One list indicated it's in as many as SIX THOUSAND different products!).  The take away thought here is, we MUST become label readers.  Better yet, buying things that don't require a label are even better.  

      Even though the FDA itself lists 92 known side effects of aspartame ingestion, it's still on the market today.  

     Sweet Misery A Poisoned World (found here) is an EXCELLENT, must-see, documentary about aspartame. It provides an in-depth look into many aspects of Aspartame, starting from its very beginnings.  Many experts, such as Drs., Specialists and Attorneys as well as a former FDA Investigator are interviewed.  Each one of them gives an amazing, many times shocking, account of all that went into getting Aspartame approved and on the market. It's quite disturbing actually.  There's also interviews with aspartame victims and what they went through.  Together, they all uncover so much and it was a real, eye-opener for me.  

      Yes, it was an expensive lesson for me to learn and it is my hope to keep as many people as possible from going through it too. 

                        Balance.....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!