Balance .... despite the Chaos
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Thankful - My Top 10

10/18/2017

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       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!
​

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An Award

7/14/2017

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As I scroll through my news feed, I notice some who are  "getting active" and "getting fit" as well as winning awards for doing so.

Their award may be for winning a race, for something as simple as having their participation acknowledged or it may be for something  in between.   

Their commentary is very clear. All one needs is motivation to get up off that couch.

     Plain and simple - Motivation is all that stands in the way. 

     Their subsequent message insinuates those who do not get up off that couch, lack motivation and are, well -- just plain lazy.  

       As a person with chronic illness, one who used to be very active before chronic illness, this mindset frustrates me, on so many levels.        

     When one "gives" (relatively speaking) a small portion out of their abundance -- whether we're talking money, time, energy or any other commodity -- they're still left with more than enough to cover all the other aspects of their lives.  In this case, we're talking energy and the energy they give, is a small piece of the proverbial energy pie.  There is more than enough left over to do their job, look after the demands of their family and their house, for a social life, for doing their hobbies -- the list goes on.  If this was illustrated as a pie chart, the exercise "slice" would be a small portion of the pie.  

        For those with ME/CFS or other chronic illness however, not getting up off the couch to take part in these activities has nothing to do with laziness, lack of motivation or anything else along these lines.  These folks would give anything to be able to get up off the couch, to enter such races, to do anything for that matter.  They struggle every day to do what they need to do, just to get through their daily lives.  They don't give out of our abundance, they give out of our lack. 

       The first group, the one always acknowledged and awarded, give out of their abundance.

      The second group, the one labelled as lazy and unmotivated, give out of their shortage.

     It's easy to give when you have lots, but not so easy when you have nothing or little.

      So why, I wonder, do we award the first group while not even acknowledging the second group?  Relatively speaking, the second group gives far more on so many levels. 

       The folks I know with chronic illness, fight every single day of their life. They fight to learn as much as they can about their illness and how to improve their health, sometimes going backward instead of forward as a result of using energy they didn't have.  They fight to find Doctors who will believe them and listen to them. They fight their illness just to do basic things and get through their daily lives.  Then they fight the next day, to do the very same thing all over again.     

      I would like everyone in this second group to know, you are *my* inspiration.  When I'm having a bad day, I only have to look to you.  You are the motivators and the encouragers.  You are the true fighters and represent real strength. I get so much inspiration from all of you to carry on, to keep on fighting.  I know you're not recognized for this and are most often wrongly labelled as lazy and unmotivated.  I know you give out of your lack not your abundance  and if I could, would award each of you.

       The best I can do however, is acknowledge each of you and dedicate this blog post to all of you. Please know, you're not lazy or unmotivated. You are celebrated, appreciated and looked up to, more than you will ever know!!   

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                    An award for all of those who continue to fight on

​                                           in order to keep 

​                                     Balance....Despite the Chaos!


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When it's been that kind of a day

3/9/2017

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     Nothing says serenity quite like the gentle ocean waves washing over the last bit of slushy iceberg. Even better when it's centre stage, illuminated in the soft glow of morning sun as it rises up over the ocean's edge, beginning it's daily journey.

     A new day is dawning.

     These things together with the salt 
air and the peacefulness of the early morning give vivid definition to serenity.  ​

      (This is previously posted here on the serenity page of my blog, but bears repeating as it's been *that* kind of day.  )

            Refusing to give up so I can have, 

                                  Balance....despite the chaos!
           
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Moving Forward .... When Chronically Ill?

1/26/2016

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                  Yes!    


     A question I recently saw on an on line forum read:

     "How am I to get better when I am not well enough to do any of the things to help me get well?"

      Excellent question!  

     

​        I've struggled with this question myself since ME/CFS and Fibro came to visit and perhaps you have as well.  Any chronic illness is such a catch 22, isn't it?  It's certainly NOT for sissies!

       On one hand, we may know some things we need to do in order to improve our health but are just too ill to do them.  

        Or, we may have no idea what we need to do but are too ill to even research or find out.  This was my particular situation and let me tell you, it is not easy.  Too ill to remember my own phone number meant I certainly had no energy to search out let alone read, comprehend and implement treatments which may help me get well.

      In those early days of my dealings with ME/CFS and Fibro, I had three states of being:
  • slow motion,
  • barely functioning and
  • next thing to dead (at least it seemed that way).      

     I felt forgotten by almost everyone.  Everything (and I mean everything!) I did was through a deep, dark, soupy, brain-fogged state.  The simplest of tasks took forever, if at all.   Some days, I was too ill to get out of bed, so sleep all day it was.  At the end of the day I would think, at least I made it through the day...perhaps tomorrow, I'll be able to do more.  Sometimes tomorrow was the day day and sometimes it wasn't.  Many times there were a whole lot of tomorrows before I was able to take even the smallest step forward.  It was horrible, depressing and demeaning, but...what choice did I have?

       Many times, the most I could do was to have hope for tomorrow.  

      - And - in that statement, would be the best advice I could offer that person.   One step at a time, no matter how slowly that is. Some days that may be one, two or even several steps backward.  Some days, we're just too ill to do anything.  That's ok.  Don't beat yourself up over it.  Rest for today.  Focus on this day and getting through it.  

     Tomorrow is a new day with new possibilities.  I realize there are a lot of things that we can't do but our reality is what it is.  We can't change that fact (as much as we'd like to).  Perhaps our only accomplishment today is getting through it.  We may not have been able to get out of bed but we perservered through it and that in itself is worthwhile and something we should celebrate.  Now, that may not be celebration- worthy for the healthy folk, but when one is so terribly ill, day after day, just making it through the day *IS* a huge accomplishment and a reason to celebrate!

     Perhaps there is something, however small, we can incorporate into our day, something that will make us feel better....either that will help us get well or lift our spirits to improve our emotionally well being.    Things like:
  • read an inspiring story
  • try that new supplement we have
  • call a friend
  • prepare that healthy dish we read about last week...the one that is full of those healthy ingredients
  • enjoy some fresh air from our deck or perhaps just feel the warmth of the sun as it streams in through the window
  • listen to some favourite music

--- whatever we are capable of doing today.

      Once we have been successful with this endeavour, build on it.   Recall it on the days we feel like we're stagnating or even moving backward. When the doubts start to creep in, re-focus on the things we have accomplished, no matter how small they may seem.  They too once were monumental but we conquered them. 

        Slow and steady wins the race.  Remember and celebrate successes.  Don't beat yourself up over what you may feel are failures.  Living with chronic illness alone, is no small feat.   

      Yes, you can do this!  Do whatever you're able, no matter how big or small, to move forward and have

                                        Balance, despite the chaos.     

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