Balance .... despite the Chaos
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What is it with chronic illness and weight gain?

1/30/2016

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   .... and more importantly,

How come it's so difficult to lose?

-  and -

How can I lose it when I cannot exercise?

       Growing up, I never really had a problem with my weight. I was active, ate fairly decently and my metabolism looked after the rest.

      In the eight months leading up to my wedding, I encountered a whole slew of stressful events, one after the other, that caused me to lose some weight.  At the final fitting of my wedding gown, the seamstress was more than a little concerned as the size 4 dress had already been taken in as much as it could.  "You're not going to lose anymore weight, are you??" she said with a tone that more said, "You had better not lose anymore!"

       On my wedding day, my 5'8" body weighed in at 103 lbs.

      After I had children even, I was able to lose all of my baby weight without too much difficulty.  

     Enter chronic illness.  

     Everything changed.

      Although my diet had not changed and even my exercise level at that point was the same (because I did not know what I had, let alone that exercise was actually dangerous to me), the weight went on and went on quickly.

       I tried so much.  I tried cutting out fat.  I tried to have some meatless meals.  I tried to eat less.  And as difficult as it was, I walked.  The more of these things I did, the more weight I gained.  I could almost feel the weight going on with each meal I ate.

      As I learned more about my illnesses and realized exercise was actually hurting me, I figured I was really doomed.  After all, everyone knows, it's impossible to lose weight without exercise.  Or is it?

     After seven years of trying everything I could think of to lose weight, I finally gave up figuring there was nothing I could do.  

      A friend, who was also diabetic, shared with me her weight loss journey with me. In addition to being diabetic, she also had severe pain issues caused by many factors.  This meant she too was unable to exercise but, at that point, had lost 60 lbs (is now up to 130!) with this "plan" called Trim Healthy Mama.  She shared with me how it was easy to do, you ate until you were full and never felt deprived or that you were missing out on something.  Snacks were not only encouraged, but a must. The best part was, there wasn't a lot that had to be given up and for the things that were, there were a lot of substitutions.  It was a way of eating, a lifestyle, that could be incorporated into one's life.

     I was skeptical.  VERY skeptical.

    How on earth could anyone eat until you were full, not feel deprived, not be always starving, eat snacks, not exercise and yet still lose weight?  It seemed much too good to be true and we all know the old saying.... "If it's too good to be true, it probably is...."

      I watched her for awhile and as her weight continued to drop, I figured what do I have to lose (other than weight!) by trying?  So, I bought the book and started into the plan.

      I weighed in.

       I took the usual three measurements and recorded them.  I wish now I'd measured everything, like my calves, thighs and arms, but I didn't.  I wasn't expecting any weight loss, so only took enough to see for myself this plan did not work (or at least did not work for me.  After all, I'd tried everything with no success at all...why should this one be any different?)

      Oh my.

       Weight immediately started to fall off.  Even quicker than that, the inches started to fall off.  My clothes started to become looser and looser.  I was not exercising at all.  I was eating more food than I had in a long time.  I was eating tastier food, I was having snacks, I was eating more satisfying food and.losing.weight.doing so.

       In four months, I had lost 25 lbs and 18 inches (this does not include what I lost on my legs and arms as I did not pre measure.  I know I lost a lot here too though because the legs of all my pants were now way too big!)  I felt better than I ever had. It was truly amazing.  And...my friend was right.  I never felt deprived, I was eating snacks.  It quickly became a way of life for me.  The thing I like about the program -- it's flexible and do-able on so many levels.  They have baking products that can be purchased, whether that's a lot of them or only a few.  This makes the baking and cooking easier, but the plan can also be done without any of them.  There's tons of support in the form of online facebook groups and whether you're a beginner, more experienced, a turtle (slow losing), whole foods only, etc. etc., there's a group (or groups) for you!  These groups are a great place to exchange ideas, recipes, ask questions etc.    

     There is the book which explains the plan, the way of eating etc., plus there is a cookbook with all kinds of yummy recipes in them.

​       OK.... Enough of my rambling lol (but I really do love this plan!) You can check it out for yourself here (this is an affiliate link) :  Trim Healthy Mama   
 

​            I am trim healthy mama-ing which is helping me to keep the

                                      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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Slow Down! 

1/21/2016

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      I cringe every time I see people rushing around or hear them frantically and expressively articulating the multitude of things they must accomplish yet today. They're out of breath just verbalizing it and despite skipping meals and only sleeping a few hours a day for the last week, they're still three days behind where they feel they should be.  

      Kids to look after, extra curricular events to get to, school events and homework, demanding jobs, sick family members to tend to, pets to look after, vehicles to service, houses to clean and maintain, grocery shopping, doctor's appointments, bills to pay, illness.....the list goes on and on.

     Let's face it, life is busy and gets busier all the time.  We're expected to do more with less and pick up the slack in doing so.  We do our best to keep up, but it feels the more we complete on our to-do list, the more there is left to do.  This fast and frenzied pace is the norm any more but we must stop and consider, we do this at what cost?

      Something or someone (or both!) will eventually bear the brunt of this non stop, whirlwind pace and pay the price.  This price can come in many forms but when it's time to pay the piper, the price is high.  I know this all too well and unfortunately, learned the hard way.

     When I see or hear these people, I immediately want to call out to them:,

               "Slow Down!"
               "Take a Break!"
               "Don't sweat the small stuff!"
               "Breathe!....don't forget to breathe!!!"  

       .... a number of things come to mind.  I want to warn them, to save them from traveling down the same road I did.  In the beginning, I did try to warn folks but the only thing that accomplished was them looking at me like I had three heads.  

     Oh dear.

     Not the reaction I wanted.

     So now, I politely mention to these people to not forget about themselves.  I remind them they're important too and if they get sick, nothing will get done.  Their to-do list will get longer by the day.  

     However,  for the most part I politely smile, bite my tongue and secretly cringe as I remind myself of these facts.  I need to keep striving myself, to keep....

                                      Balance.....despite the Chaos

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Positivity Makes It All OK ?                                                                               Okie Dokie then....

1/16/2016

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     I recently read an article on line which in a nutshell said, we need to "choose" to be positive about our chronic illness / pain.  How does one do that, exactly?

     Something like: "Yipee!  I'm in more pain today than I was yesterday!"

     Or perhaps: "I'm so glad to be in so much pain!!" 

     ?  Ummm...  No.

     It was as if by "choosing" (if only it was a choice!) to be positive about our chronic illness, that will somehow magically make the chronic illness disappear. The article further stated, we should replace any negative thoughts that come into our heads with positive ones and when we do this enough times, the positive ones become easier and the negative ones less frequent.  

     I wish it was that easy!  

     Just think positive and eventually all will be A.O.K.  Unfortunately, it's not that easy and by employing those lies, the only ones we're fooling or lying to is ourselves.  Except, we cannot lie to ourselves. 

     In addition to this, we may fool everyone else around us, but what good does this do?  If we say "I am fine" when we're in unbearable pain, who have we fooled?  It doesn't make the pain go away or even make it less painful.  No, it's still there, as bad as ever, except now everyone around us believes (because we told them), we are fine and we must now continue to live up to "being fine".  Not only are we not being honest, we're helping others believe we're ok when we are not.  That further erodes our chance of gaining their understanding.

       If the pain is real, it is real and there is nothing wrong with calling a spade a spade.

      Contrast that article with another meme I saw, which read:

            "Positivity is not a cure for chronic illness.  
             Reality and Honesty about symptoms is not negativity"  

I absolutely LOVE this one!!!  

     By being honest about our illness, our symptoms and our struggles, we're not being  negative.....we're just being, well, honest and realistic.  

     We wouldn't say we're warm when we're cold or that we're full when we're actually starving.  That would accomplish nothing and we'd still be cold and hungry. Saying we're unwell or in pain etc., is no more negative than saying we are cold or hungry. 

    Being honest and realistic so we can have Balance, despite the Chaos

     
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A Meme:                                                                                              30 Things You May Not Know About My Invisible Illness

1/14/2016

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​    Invisible Illness Week has posted a meme, which I think is wonderful.
 
​     It looks like a very comprehensive list of questions, so I thought I'd take part!  

     





Here are my answers:


1.  The illness I live with is:
       ME/CFS (Myalgic Enchephalomyelitis / Chronic Fatigue Syndrome) and Fibromyalgia 


2.  I was diagnosed with it in the year:
       2008


3.  But I had symptoms since:
       June 9, 2007 (and I can give you the ext time it hit as well)


4. The biggest adjustment I’ve had to make is:
       Everything.  I've had to re-invent myself by examining every single part of who I am.  


5. Most people assume:
       That I am fine.  I tweak my life so much to make it possible to attend as much as possible, take part in as much as possible and do as much as possible while keeping in the confines of my illnesses.  Most people think see me out, think I am fine and assume I can do as much as they can.


6. The hardest part about mornings are:
       Just about everything.  Before chronic illness struck, I was a morning person.  In my head, I am *still* a morning person but my body has different ideas!  For the first few years after diagnosis, and even still to some extent, it was very difficult thinking one way but having to be another way.  Like a constant battle going on between my brain and my body: "Get up!"  "Time to get going!!" vs "Too much pain"  "Can't move"  "Maybe Later" "Shut up!"   ..... you get the picture.
       I have learned to compromise this by finding a way that works for me.  I still wake up early (that morning person within is alive and well), but now enjoy my mornings. Sipping my coffee, watching the sunrise up over the ocean, checking my Facebook, Reading and writing emails from/to friends.  If I don't feel like doing it.... or am unable.... I don't!  Such a freeing feeling it is!!


7. My favorite medical TV show is:
       I don't watch tv.


8. A gadget I couldn’t live without is:
       My laptop.


9. The hardest part about nights are:
       Staying awake.  I tend to lay down in the early evening because it's so comfortable and next thing I know my husband is waking me up at 10 or 11 to get ready for bed.  Then, because I've slept for awhile, I am unable to get back to sleep.  


10. Each day I take __ pills & vitamins. (No comments, please)
       I've only found relief from alternative methods.  I take several supplements and vitamins, not every day all year long but as needed.  They include, magnesium, CoQ10, B Vitamins, Vitamin C, Vitamin D, Licorice Root, Licorice Root, Iodine (topically applied)


11. Regarding alternative treatments I:
       I am very thankful for traditional medicine where I received a quick diagnosis (relatively speaking).  That's where the relief ended though as the diagnosing Dr. told me at the same time he delivered my diagnosis, "There is nothing further we can do for you".  Thankfully, I did not accept that as absolute truth and stop there.  I researched, talked to others and visited several alternative practitioners.


12. If I had to choose between an invisible illness or visible I would choose:
       Visible for sure.  At least then it would be taken seriously!


13. Regarding working and career:
       I already had three children who I was homeschooling, plus I ran a home-based business.  When I became ill, I still had those children and homeschooling to take care of.  I cut back on my home-based business for awhile and our homeschooling year suffered a bit.  


14. People would be surprised to know:
       How much pain I endure every single day and how ill I really am.


15. The hardest thing to accept about my new reality has been:
        I have to carefully plan out my days.  I used to think my days were planned, but now every.single.detail of every single day must be planned.


16. Something I never thought I could do with my illness that I did was:
       Have some sort of a life beyond being bedridden and brain-fogged.


17. The commercials about my illness:
       Hmmm...don't recall seeing any commercials about my illnesses.


18. Something I really miss doing since I was diagnosed is:
       Having lots of energy, being able to put in a full day and having my energy fully replenished by a night's sleep.


19. It was really hard to have to give up:
          Being active.


20. A new hobby I have taken up since my diagnosis is:
       I haven't taken up anything new.


21. If I could have one day of feeling normal again I would:
       Go out for the day --- the whole day.  Shopping and lunch with no worries about pre-planning the day.


22. My illness has taught me:
       a) Patience
       b) There is always hope  


23. Want to know a secret? One thing people say that gets under my skin is:
        "I get tired too but I have to push on through and can't use that as an excuse"  


24. But I love it when people:
       Ask how my week has been/how I've been feeling


25. My favorite motto, scripture, quote that gets me through tough times is:
       I have several depending on the situation.          


26. When someone is diagnosed I’d like to tell them:
       There will be a lot of negative, doubting, dismissing type of comments -- ignore them and don't waste your precious energy on such people.  Take it one day at a time. Don't give up! 


27. Something that has surprised me about living with an illness is:
       Most surprising -- there have been some positives!  I am much more laid back and do not stress out nearly as much as I used to.
​

28. The nicest thing someone did for me when I wasn’t feeling well was:
       I do not have any support other than my immediate family.  They have been great in supporting me through every stage of this journey and without them, I am unsure what I would have done.


29. I’m involved with Invisible Illness Week because:
       It's great to support illnesses that go unnoticed.       


30. The fact that you read this list makes me feel:
       Wonderful!  Thanks for caring enough to read.

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Pretending vs. Reality 

1/4/2016

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I recently read a meme that said:

      "Pretending you're ok is easier than explaining to everyone why you're not"

     I find myself doing this --- the "pretending I'm ok" part all of the time.  It's a struggle to understand why it is this way, but it is.   The pretending, in order to appear ok, is not easy by any stretch.  No, it requires a lot of work -- organizing, planning, scheduling (and this means sticking to it!), but in the end is a lot easier than trying to explain to others why I am not ok.

        For regular, simple outings, such as grocery shopping, church or appts. etc., planning and preparation has to be done with attention to the most minute of details. Larger scale events have to be assessed on an event-by-event basis.  For the everyday outings though, planning goes something like this:

 Planning / Accepting
  • The venue needs to be assessed / scoped out
  • Will there be a lot of standing?
  • If so, are there ways to modify this?
  • Are there chairs to sit down?
  • Are there breaks incorporated into the event or is it a start-to-finish type of event?
  • If there aren't scheduled breaks, can it be modified to allow for breaks?
  • Is there a lot of walking to get to the venue?
  • How long will it be?

 Before
  • A rest day needs to be planned for the day before which means, I must be ready to go two days before
  • Try to stick to pre scheduled events -- nothing impromptu
  • On the day of the event, schedule appropriate time into getting ready.  ie  Get up / shower / rest / eat breakfast / rest / get dressed / rest / do hair / rest --- you get the picture

During
  • Arrive ahead of time to allow for a rest
  • Listen to my body and rest when needed.  This may mean sitting down when it's expected to stand.  It may mean excusing myself from the event to find a chair and sit down.  Whatever my body is telling me to do, it must be listened to

After
  • No other events planned for the remainder of the day after the event is over.  None.
  • Resting for the remainder of the day
  • A down day or day of rest scheduled for the day after


       Strictly following these steps allows me to (usually) take part in an event.  So what's the big deal?  As long as we are organized and plan carefully, all is  well.  Problem solved, right?

       Wrong.  

       While this pretending, tweaking and accommodating may make it easier short term, it creates bigger problems down the road.   Since we are out and about, we appear fine to everyone else.  Nobody would ever guess all that we've gone through in order to go on that simple outing.  They think we're able to be out today, so assume we must either be better or else we're faking the severity of our illness.  Sometimes then, when it's a bigger event or we are just to ill to go out, they can't understand why we were unable to to take part this time.    


      The more accommodating  and tweaking we do, the more it's expected and the more difficult it becomes.

      We need to change this.  We need to stop with the pretending.  

                We need to move forward as we strive to Seek Balance, Despite the Chaos
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