Sharing the lessons along the way…

Posts tagged ‘living with illness’

I am not a Unicorn!!

Photo Courtesy of Chilledworld.com

Photo Courtesy of Chilledworld.com

I know this might be hard to believe, but I am a human being.  As such, I find that others often expect the alternate universe Tawny who has magical powers, is a unicorn or perhaps the Tawny that flies in invisible planes and can be in more than one place at a time.

Unlike the superhero Tawny who may or may not live in an alternate universe, I am not available 24/7 ready and willing to leap a tall buildings in a single bound.

In this reality, I need time to recuperate rest and not be “on” for others 24/7.  This was true long before my chronic condition, in fact.  I have known this about myself for a long time.  It wasn’t until after my diagnosis that I began to honor it more.  I know when I can absolutely do nothing more for anyone else unless I take care of myself.

Every now and again, I wish I could be in that alternate universe.  I wish I was a unicorn, had some magical beans or a wand or something so that I could continue to help all who need it in the best possible way.  Or to simply get to hang out with people I miss terribly and don’t get to see that often anymore.

And every now and again, I have others place these superhuman expectation on me.  To help in ways I am unable, or to do just that one more thing.  Sometimes they even use guilt to push me to wave my magic wand despite having already done as much as I could.

In this universe, I do the very best I can from the time I get up until the time I go to bed.  If anyone is going to challenge that “best” then it will be me because I know more than anyone else does just how important it is for me to do as much as I can to make life just a little bit better than it was before I arrived.

Believe me when I say this, I will always be harder on myself about it than anyone’s guilt trip or anyone’s attempt to push one of my buttons.  That’s why those guilt trips and button pushing attempts are less likely to work anymore and the answer is still no.

Actually, I hardly have anyone in my inner circle who doesn’t respect the answer no because they know me well enough to know that I totally would if I could.  They know it isn’t personal.  They know that I am not a unicorn and I love them for it!

I am grateful for everything I can do and spend my time and energy figuring out ways to do even more without sacrificing my well-being in the process.

Wouldn’t it be just a little bit fun though to have a super power, have unlimited energy (not the pathological kind), to constantly be able to serve humanity without any regard for self-care, have magic wands or magic beans or fly invisible planes?

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Tipping the scales

Rest

In the spirit of transparency, which is what I strive for most with this blog, I have to tell you I am exhausted and a bit off-balance.

Just as the needs of those I serve are seemingly endless, so too are my own needs.  The balance has somehow shifted in the past couple months to mine getting a bit less attention than others’.

Fortunately, I know I am tired.  I know I the balance is off, and I have a plan to address it.

I have known it for a while, but was hoping my body would work with me until there was a bit of a break.  Yesterday, my body made it quite clear that it would wait no longer.  It has my full attention now.

I have not come this far, only to come this far, so whatever it takes to keep this roll going, I am planning to make happen.

Step One:            Take time off if I need to take time off.  And I will use it to                                                    recuperate.

Step Two:            To finish out February and throughout March, I will consider my                                      well-being and self-care needs before I consider anyone else’s.

Step Three:        Repeat steps 1 and 2 as needed.

Self-care isn’t rocket science.  I know what I need, and I need to meet those needs because I certainly know how.  That doesn’t mean I cannot do things for others, it just means I need to take more time to fill my own tank better first.  I started toward that end as I posted my last blog, but it wasn’t enough.  Fortunately, I always have a plan B, C, etc.  Generally, I need them!

There have been countless times in my life where I have tried to be everything to everyone.  And countless times, I have fallen short of the mark because, well, it is simply not humanly possible to do so.  I doubt anyone expects that of me, so it is time for me to let that expectation of myself go as well.

I don’t have to move at the speed of light to make magic happen.  I have proven that time and again.

My action plan for this week was to post a blog.  Action plan completed!  Not to worry, I am ok and taking care of what I need to take care of, and everything will appear as it did before this post!  😉

 

 

 

Off to the Races in 2016

Racing Ruby

My life has raced along since the start of 2016.  Right out of the gate, my life at work was off to the races.  It will likely be much the same throughout the year as we grow and expand several new wellness programs.

If you have ever ran, biked, swam, rowed or otherwise been in a race, you may know that giving your all during that race takes a toll on the body at the very same time it can be invigorating and exciting.  Most races are short-lived and have a specific distance after which you can rest and recover before training for the next.

Each day often feels like a race.  At the end of the workday, I come home, walk my dog, feed us both and then crash.  I only hope that my body gets enough rest and recovery time before starting the next leg of race for the week as I go.  At the end of the workweek races, I have very little left of me.

In response to this wonderfully exciting, not likely to end anytime soon, race at work, I have had to make some adjustments in my self-care and planning on weekends and evenings.

I have stepped up my healthy eating to yet another level, have set my bedtime routine earlier and my phone/screen time after work has been limited.  So far, these changes have been helpful in being able to make it through the workweek, but doesn’t always allow for there to be energy to do much other than rest and recover on weekends.

It has made for some great bonding time with my alien vampire baby dog Ruby
, but it hasn’t  allowed for as much social time with my friends and family. I am still getting some on the weekends, but with my level of fatigue and the colder temperatures, that is a bit more challenging to do.

There have already been many extras and many exciting things in 2016, for which I am both grateful and feel honored.  (Lightning Hero Award!) My plan is to keep honing my self-care as I move through month #2 of 2016 to keep the momentum going.

How is 2016 treating you so far?  Do you ever feel like you are always off to the races?

 

 

 

Ending an Era–Weeble-Wobble Style

There is a natural order and flow to the universe.  It becomes evident as one period ends and another begins.  No time is it more evident than the ending of one year into another.

This year, on New Year’s weekend, I did something a bit different than I have in the last few.  While I was my usual reflective self, purged things in my house no longer necessary, and such, I was also ever conscious of the need to be still enough and grounded enough to understand what I needed to let go of from 2015.  I wanted to be clear and certain about what would carry over into 2016.

My 2015 was overall quite positive with the exception of the loss of my soul mate dog.  Much of what happened in 2015 involved the ending of an era.  An era that started nearly 15 years ago, and I am not sure I realized the magnitude of that ending.

I didn’t just need the stillness and grounding to close out a typical year, but to close out an era and to put some serious thought into what I wanted to create for the next era that had already begun to emerge in 2015 (late 2014 technically).

Moving forward is probably one of my frequently used tags for this blog, so it might surprise you that I historically am not very good at letting things go.  I have so often in my life hung on so tightly to ideas, thought patterns, people, jobs, situations, friends, etc. long after I knew it was no longer serving me.  I am not sure I can say that in this new emerging era.  I have gotten quite a bit better, and perhaps even more efficient, in my ability to let go and move forward.

It was certainly something Duke and his brother tried so very hard to teach me in their lifetime, so I am proud to be able to honor them by finally “getting” it.  I surprised myself when it was time to let Amore and Duke go because I didn’t feel the need to hang on for dear life for myself.  I felt more the need to let them go for them.  Duke was truly the testament for that.  Amore paved the way for it.

Letting Duke go meant the end of a very challenging era.  My entire life was thwarted, derailed, and I was on a detour for quite a while.  But somewhere along the way, I realized I might just be a Weeble-Wobble.  How else can I explain where I am now, based on where I started?

weeble-wobble

The detour taught me more than I ever expected to learn, and gave me a perspective that I never thought I would have.  The lessons, the perspective, gratitude, humility, and the strength from that era helped me to move forward at the time of his loss, but more than that, have allowed me to get back on the path with more certainty, in spite of my illness.

It is this foundation I chose to take with me into my life’s new era, and into 2016. What are you choosing to take with you into 2016?  What are you letting go?

 

 

 

But really, how are you?

If you have read my blog for any length of time, you may be wondering how I can write 28 days in a row and mention nothing about illness or the status of my symptoms.

The thought really hadn’t occurred to me that it would be of any interest until last night after multiple people asked, “No, really, how are you doing?” after my first response of “Good” just didn’t seem to satisfy.

I make a conscious decision not to focus on my symptoms, and if I do, it is merely to figure out a way to better self-manage them so that I can continue focusing on the mission at hand.  Focusing on them for any other reason simply doesn’t serve me.

Does that mean that I am not aware of what my body is experiencing?  Of course not.  Does not focusing on the symptoms make them magically not exist?  No, but wouldn’t that be something!

All it really means is that I acknowledge each symptom as I go, and figure out a way (or many ways) to work around them to do what needs to be done.  Working full-time this year has challenged my ability to manage my energy, maintain this level of mobility, manage pain, manage my emotions, work in time for physical therapy, and a myriad of other things.

Part of staying focused on my mission encompasses these things.  Being able to better manage the illness, the residual issues from all the surgeries, and maintain balance with all of it, is the only way I can serve in the way I want to serve.

So, if you need to know specifics, I can oblige…

There is still burning nerve pain in my torso, there is still clonus and spasticity in my feet and legs, the neurogenic bladder and bowel are still with us, my feet and ankles hurt all the time from the tightness, the jaw clonus continues to create dental issues while I sleep…

That all being said, there is a list a bit longer of the things that I can do in spite of all of those things!  It’s fine with me if you would like to focus on the list of positives and not the other stuff right alongside me!

Day 29…one to go!  Yay Team Tiny Peppers!!

nanopoblano2015light

Serenity Sunday

zeke and rube 11-9-15

By Thursday evening, I knew what I had to do.  I needed to scrap most of the plans and tentative plans for my weekend and instead assertively plan some down time.  The weekend needed to be without agendas and without needing to rush to do anything.

At my step mom’s Birthday party Friday evening, I had canceled everything tentative or planned except my Saturday bike ride.  Biking is physical therapy, so that stayed because it was important.  Of course, we went a bit farther and with a bit more intensity than we meant to, so I was quite a bit more tired than I usually am afterwards.

Just the same, Ruby and I made our way out to the Art Harvest in our own time and for however long we wanted.  My legs were tired that was for sure.  It was hot, Ruby and I both were sure of that too.

Asleep from exhaustion and contentment by 7:30pm, I awoke early for a day that was already scheduled as a serene one.  There was no agenda.  No itinerary.  I had things I needed to do to get ready for the week, but no cares about what order or time frame they happened.

Ruby got to her walk and got to see her cousin Zeke.  Later she got to see her Aunt Marilyn, who just returned from China.  I attempted to try to recreate the last two-three weeks to catch her up (Geez, it has been full of so much) as if she nor I had anything to do today.

Laundry, cleaning, grocery shopping, and more was accomplished quite early in the day.  My favorite music played in the background and I loved doing all of it.

It is amazing what a difference a day of rest provides.  No one needed anything from me, expected anything from me (except for Ruby) and I feel like I am rejuvenated and ready for another busy week.  To boot, I still have the rest of the afternoon and evening to do with what I wish!

Self-care is so important to my ability to do what I most want to do in this life—be the change and limit the amount my illness interferes in my ability to do so.

Day Eight and going strong for Team Pepper!

nanopoblano2015light

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