Balance .... despite the Chaos
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My Secret Life

7/7/2017

2 Comments

 
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     Do you ever feel living with a chronic illness means also having a 'secret' life?  
One life which is 'acceptable' and the other which is not?  

The acceptable life you're allowed to share with others and the other one, well it must be kept almost secret?


         I sure do and find it extremely frustrating  !!!

     Unfortunately, the acceptable life, the one I can share the events and happenings of, the one people are willing to accept, is the not the real one.   It is the one made up of carefully planned events -- one next week, another the week after that, etc. These are not large events either -- perhaps a family gathering or even just a trip to the grocery store.  Things most people do without any thought or even on their way home from work.   I, on the other hand, must carefully and purposefully plan these events and then plan for these. This acceptable life, is the one I must give the absolute best version of me that I am able to give (and sometimes even then, it doesn't pass as acceptable).  In order for this to happen, in the days leading up to the event, I must conserve my energy, I must be on top of my diet and supplements and I must schedule lots of rests, especially the day before.

     I must work throughout the event too, continuing to conserve my energy while there -- not moving around too much and staying well within my energy envelope, at all costs.  It doesn't end there either because I need to plan a complete day of rest after the event, to recover from the event and to ward off a complete crash that could land me in bed for days or weeks. This is when I return to my bed and begin entry back into my secret life.  

     The secret  life is my real life and the real me.  This is the one my immediate family gets to see.  It's secret because, it's the one that nobody else sees or more accurately, the one they don't want to see, the one they refuse to see, the one they refuse to acknowledge exists.    

     If it were only a few people, groups etc.,  it would be easy to circumnavigate around them. It's not though, it spans across all groups of people -- friends, extended family, co-workers, neighbours -- the list goes on.  I can't even get a Dr. to see the real life I live.  Their outright refusal to learn about, understand or care what I go through speaks volumes. (This goes for a lot of us with chronic illness).

       Did I mention this is frustrating?  If I wasn't so ill and in so much pain, I may try to make it bearable by getting into my "secret life".  Perhaps I'd have a cape and a mask and go through all sorts of exciting adventures....  

          ...  But I don't.

     There is no cape, no mask, no exciting adventures -- only getting through each day the best I can.  Even on the good days, the one I've planned for and feel I've had success with, quite often seem to look different to others, like they actually belong in that secret life, rather than the acceptable one. 

        I had one such day recently.  I was giving my very best "performance", being the best version of me I could that day, one that I'd prepared for the very best I could.  It obviously wasn't up to their standard though. I wasn't doing as much as some of them thought I should and I came under their harsh judgement for not doing enough.  They saw me sitting in the chair (what I was really doing, was saving and stretching my energy).  They complained I wasn't doing enough, that I should be up helping, doing more.  They did not care what I had gone through just to get to that point.  No, *that* part is for my secret life, the one they refuse to acknowledge or discuss.  

      I know I am not alone as everyone who lives with chronic illness lives through these things.  It's a way of life for us and we do the best we can do with it all.  

      I do have a message for these folks though, the folks who have chronically ill people in their life but for whatever reason can't or refuse to see what they go through.

             It's time to wake up folks!!!  It's time to pull your head
             out of the sand!!!    It's time to look around and truly see
             the 'secret lives' your loved ones are living.  Please know,
             we are NOT lazy.  We do the absolute best we can do
             and then some.  Please take a few moments to really
             understand our whole life and what we go through daily.  
            Hopefully none of you ever have to endure what we
             do -- we wouldn't wish that on our worst enemies -- but
                a little understanding goes a long way!!

       
 Working hard to keep the

                    Balance.....Despite the Chaos!

2 Comments

Pretending vs. Reality 

1/4/2016

0 Comments

 
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
0 Comments

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