Sharing the lessons along the way…

Life is Twisty-Turny

twistyturny

I find day-to-day life rather entertaining.  It is very twisty-turny in the way that one situation leads into another.  It is twisty-turny in how interactions with one person influence interactions with the next, and it certainly doesn’t stop its twisty-turny nature there.

Living with a chronic condition is equally twisty-turny.  One relatively “normal” bodily shift can twisty-turn all other already compromised functions.  One medication shift, one night of poor sleep, one infection, one more physical therapy exercise…makes everything all twisty-turny.

I have probably taken some combination of my dogs on walks a hundred times passing these twisty-turny trees over the last ten years of living in this neighborhood.  I was having a particularly twisty-turny week last week when they caught my eye and made me smile.

Life is twisty-turny.  Even in nature, we see these twists and turns.  It is part of the joy of growing through life.  Moving through the twists and turns to see the new twists and turns is part of the fun of it.

I think we have this idea that there aren’t supposed to be twists and turns in our lives and that we are doing something wrong if we have them, so we tend to resist them.  I know I spent nearly 30 years resisting them because I really thought that was what a person was supposed to do.

It has taken a while for me to truly “get” that these twists and turns make for one amazing ride through this life.  In my particularly twisty-turny week last week, I did my best to go with it and to keep moving forward through all of it.  I even made up comedy shticks for some of the less pleasant of the twists and turns.  I know that once I get past the twists or turns, there is another side, so it is just a matter of moving through.

The twists and turns were simply twists and turns.  I didn’t allow myself to put more meaning or more energy into any of them.  Instead, I remained focused on what I needed to accomplish each day and figured out ways to amuse myself along the way.

It’s ok that life is twisty-turny as long as living life, as fully as possible, doesn’t stop at the first twist or the first turn.

…wait for it…

wait for it1

Sometimes I feel like a contractor building a demolished house from scratch.  Engineers and architects are being consulted, land surveys are being completed, plans are being designed and redesigned, and permits being applied for—all long before the first footer is ever poured.

By the time the foundation is laid, it seems that an inordinate amount of time has elapsed.  This house is taking forever to build!

Over the years with illness, I have grown more accustomed to being friendly with patience.  Nothing in the world of illness happens all that quickly.

I haven’t always been so patient with my planning and desire for immediate results.  In my 20’s, I would want the house built the day after the plans were approved.  I would have been ready to paint and lay the flooring day two and ready to move in before a week was out.  I spent much of my life getting way too far ahead of myself.

Now I don’t mind making sure the foundation is laid properly, so that the house will stand–long after I no longer live there.  The structure and grounding is more important to me than the décor, and the time it has taken to make that solid will be well worth it.

As long as there is forward progress in the construction of it all, I am satisfied with where things are.  For nearly seven years, the foundation has been in progress.  Now the process of truly rebuilding something  has begun.

The first part of the process—the minutia and the details—have been wonderful opportunities to develop a solid hold on what it is that is going to be built.  Even that can be amended by the architect throughout the process, but the commitment to build here, upon a more solid foundation, has been made.

While I have no idea anymore just how the end result will look, I know it can be legendary!

Symptom-land Remix

The sun

The whole gist of this blog is to share my journey with a chronic, progressive illness.  You will notice that I actually don’t spend a lot of time talking about the illness or my symptoms, however.

I have likened living with a chronic illness to be similar to having an infant that arrives and totally changes the way you have to do everything—only it isn’t a cute.  I do most things differently and have had to rearrange that as different symptoms become worse or better.

While I deal and manage my symptoms on a daily basis, I still don’t spend as much time talking about them as I do managing them.  For me, if I am able to see the lessons in my day-to-day life, and to show up for life with a genuine smile, then I am being successful in the management of my symptoms.

I can hardly see the lessons when I am frustrated or stuck focusing on my symptoms.  Actually, there are times when I can hardly think about much else when I am stuck there.  You have certainly shared many of those moments with me throughout the postings over the last several years.

Today, there was a lot of inquiry about symptoms.  I don’t mind sharing, but sometimes I am just as confused as you are about what I can and am unable to make my legs, feet and such do.

There doesn’t seem to be much of an understanding about why I seem to do well on flat land, but cannot go up an incline without assistance.  Or why propelling myself in a forward motion works well in some instances, but in others I need to push off of something, and why that seems to vary with no real rhyme or reason.

I have unanswered questions that will probably be left unanswered.  I am ok with that at this point because I really would rather spend my energy elsewhere.  It is funny what happens when there are a lot of questions, however.  (Not so much ha ha funny sometimes.)

It is probably one of the reasons I prefer to see doctors only when I really need to see them—I don’t like to focus on my symptoms.  I am more than happy to do whatever I have to do to manage them and figure my energy is better used toward that end.

For the latter part of the afternoon, however, I had a little detour into symptom land.  While I was still productive, I found myself actively having to shift my focus away from them and back to what I was doing.  It isn’t that I am not aware of the symptoms or that I am trying to pretend they aren’t there—I know it’s all there.  I am not trying to minimize it either.

It is what it is, I reckon, for me.  It doesn’t run my life like it did in the early years and most of that is because I stay out of symptom land and stay in symptom management land because it only serves to dampen my quality of life when I don’t.

If you don’t have an illness and think you can’t relate, then think about this example.  Let’s say you didn’t get enough sleep last night and all you can think about is how tired you are.  Are you going to feel any better doing that?  It really isn’t much different!

Near-Missed Opportunity

Ruby by the water's edge

Ruby’s first trip to the water on our dog walk reminded me of so many memories that Duke and Amore and I created when we first moved to Florida.  It also reminded me of the fun Ruby and I will have in her lifetime creating our own memories together.

I love creating new memories and consider each day, each moment, an opportunity to do just that!

What I realized while watching Ruby (who was quite confused by crossing a larger road and seeing water) this morning was that with the flood of memories about Duke and Amore, I almost missed the opportunity to be present with her.

There were thoughts of missing Amore, thoughts of Duke’s back issues worsening, thoughts of Duke’s labragoat days of climbing rocks, thoughts of all of the times the three of us were the first on a little beach area to make footprints larger than the shore birds…

There stood Ruby at the other end of my leash, tail tucked, ears back, wondering what she was supposed to be doing at the water’s edge.  Her nose was moving in all directions, seemingly at once.  She stepped back in her quickness, and one foot fell between some pine needle covered rocks, and startled by that, she jumped into the air to get behind me.

As I realized I was so caught in the past that I was missing everything, I parked the walker and sat down beside her.  After some ear stroking and some chest rubbing, she was eager to move forward along the path by the water alongside me with less anxiety.

I told her of some of the memories I was thinking about, and then told her how much fun she and I were going to have together making our own memories.

My take away from the dog walk this morning is this:

We cannot miss the opportunities to create some wonderful memories in our NOW by staying in the past.

Humbly Grateful

With Dog...

I wrote a couple of posts about the magic of my Cali trip, and I have to tell you that the magic seems to continue.  Therefore, I have to share.

In the course of a year, the landscape of my life has changed so much, and it seems that the Cali trip was the catalyst for even more change (and fast).

So much so, that I can hardly wrap my mind around it all just yet.

Now, I not only get to go to work with my amazing dogs and hang out with some amazing humans who served our country, but I also get to help roll out a new program that empowers these amazing humans to take control over their health.

As if that wasn’t perfect enough, I get to do all of that as a full time employee as of yesterday!

Since I apparently live in a universe of ironies, I should add that I get to do all of this at the very place I had to go live as a homeless woman in a wheelchair, shortly after becoming ill.  I thought bringing Duke to work there completed the full circle in 2010, but it appears that circles may elude completion.  The irony weaved within the entire HEP experience is mind blowing.

In my wildest of dreams, I couldn’t have imagined being here, right now.  I am not sure I could have imagined it a month ago, quite honestly.

But it is real (and really ironic).  The gratitude is genuine, and interestingly enough, also humbling to me.  These are the fruits of my labor in a way that I couldn’t fathom when my body was betraying me at every turn and when my life was falling apart.

Moving through the worst fears, the darkness and putting a life back together was the labor intensive part of the process.  Were it not for all of that, often called nightmare, none of this, today would be possible.  That is where the humility and the gratitude unite for me.

If gratitude was what I thought was the cure for all that ails, I have to tell you that this combination is far more powerful than anything I have experienced.

Let Go…

Let go

In the course of reorganizing and rearranging my place, I ran across a note I had written myself sometime in 2008.  I did it with a dry erase marker, on what was supposed to be a dry erase board, but it wouldn’t ever wash off the board.

Over the years, it has been on my refrigerator and in various places, but it never made it to the throw away pile because it seems to be so meaningful.  It was around the time I wrote this note that I was really starting to grasp just how much I had a say in what happened next in my life.  It was a time of empowerment and that was only possible because I let go of my old ideas of how things “should” be.

It seems a bit fitting that I should run across this at a time when I not only feel empowered, but confident about where I am and how I am in this life.

Perhaps it will speak to you, as it does me…

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