I am Imperfectly Perfect- Hurrah!

I am jumping off the Self-Improvement Band Wagon!  Everywhere we turn, we are bombarded with messages that we are not enough as is.  We need fixing, and should be on a constant quest for self-improvement.

Amongst all this promotional jargon, a very important message is left out:  We are imperfect beings… and that’s okay.

Some believe perfection only lies in God, others in Buddha.  Some believe the Messiah will be re-incarnated one day in a perfect earth-bound being; others believe this perfect being will be the second coming of Christ.  There are the believers that Angels are pure perfection (hence the halo and wings) or if we just try hard enough, we may even be able to achieve a state of Nirvana.  But even that “option” requires life-times of reincarnation and then after achieving this state of perfection, or one-ness, you ascend the earthly physical realm.

Not to mention the airbrushed, primped and primed actors and models that are held up as measures of our short-comings.

So the ideals that are held up for all of us to attain, are truly unattainable.  We are set up for failure from the start!

Any of these options and many others left unmentioned are extremely rare occurrences.  We are talking one in 7.02 billion (!) if we even “get” one perfect being in this century.

So why are we striving so hard for the truly unachievable?  What if we set ourselves up for success instead?  Imagine the societal shift that could occur! We could consciously decide to emulate the characteristics of those we admire but not at the sacrifice of who we are and what we are capable of being.

We often correlate the self-improvement craze with external appearances. But it goes deeper than that; it can eat away at the core of who we are. I think this is what affects me the most.   We constantly question our own intents and purposes… am I good enough Parent? Mate? Employee? Friend? Volunteer? Etc.

I witness friends and family members wage daily wars on themselves… filling their days with self-judgment and self-doubt.  And let’s face it, why wouldn’t we? When we are inundated with messages of perfection, it can be very difficult to counteract that with positive, affirmative self-talk.

But what if we just tried?  What if we turned the mute button on society?  What if we started celebrating all the unique qualities that make each one of us like no other… perfect, one of a kind crystalline snowflakes?

What if we started telling ourselves (and others) how proud we are to be Imperfectly Perfect Beings.

What if we let go of all the “shoulds” and instead of listing our daily defects of character we want to get rid of or change, we started a running tab of all our superior qualities we want to cherish, nurture, expand on, and grow?!

In the book Drop the Rock, the author states: “Self-acceptance is more important than self-abuse.  I cannot abuse myself into spirituality by shaming and ridiculing myself.  I cannot open a flower with a sledgehammer- only God opens flowers.”

By constantly berating ourselves internally for all the ways we feel we come up short, we only keep our eyes and minds focused downward.  We start to stumble over our own road-blocks because the more you focus on something, the more likely it is to propagate.  Do you really want to fertilize the soil of you short comings?

Try looking outward, walking forward proudly as the person you are… the person you are meant to be.  We are all created with a unique blueprint that serves ourselves and the Universe.  And once we start to recognize and celebrate all the qualities we already possess, we can help those grow.  Nurture the things you like about yourself, your “Signature Strengths.”

You don’t need to change your characteristics, you only need to change your attitude towards those traits.

There is a process of freeing yourself from self-scrutiny by turning your “character defects” into “principles of daily living.”  For example, if you are feeling fearful, pray for faith; if you are feeling complacent, pray for action; if you are feeling resentful, meditate on forgiveness.

We are all two halves of a coin.  Our light sides and our shadow sides. We spend far too much energy trying to get rid of or hide our “shadow sides,” instead of recognizing and celebrating that these versions of ourselves are all part of our whole selves…. once we integrate both sides, we will feel balance.

And you will be able to look in the mirror with a knowing smile, “I am an Imperfectly Perfect Person and I love the all of me!”

I was inspired in part to write this post by the following blog post:

 Slice of Life

ENJOY!

Toeing The Elusive Line of Life

I am always trying to pin down that elusive line between doing too much and not engaging enough.  Dancing just over the edge into the land of “I am going to enjoy this adventure today even though I will ‘pay’ for it later” and standing at safe distance back, “forgoing opportunities for the sake of protecting my body from the ‘over-do’.”

To me this line is LIFE.

And I am not ready to give up on life yet; to fade into the background, observing others from behind my own personal protective observation glass.

Yes, this option ensures a more stable physical state of being. But it doesn’t guarantee it. I am just as likely to experience an unexpected (I was going to say “unplanned for,” but aren’t they all?!) flare of my physical symptoms after days resting “safely” on my couch.

And there is always one thing that suffers from my hesitancy to participate… my emotional well-being.

So it all comes down to another elusive concept: BALANCE.

I don’t think this is a plight just of the chronically ill.  We may suffer more serious consequences for misjudging our abilities to participate, but I know just as many well-bodied friends who also struggle with this.  Their “price” may just look different: stress, fatigue, or loss of time.

As I tiptoe around my Line of Life, I am getting better acquainted with my limits. For me, I know I will pay a steep price, so I weigh my options and choose the ones that are the most appealing and unique. 

I now pause before I make any commitment (I used to “over-commit” to everything for fear of saying no, only to have to constantly cancel at the last minute, frustrating everyone).

I check in with myself- mind, body and spirit.  I take my own set of vitals, so to speak.

And, no matter what my decision is, I try to clearly communicate with the invitee. I think the guidelines I have set up for myself can be applied to a wide range of situations and people.

It usually comes down to three categories:

1. “I’m sorry, I have to decline this time. But please don’t let this keep you from asking me in the future [big fear=being “forgotten”].  My physical well- or unwell-being is constantly fluctuating.” (insert your limits: time; commitments; family obligations; job stress; etc.).
2. “If it’s okay, I am going to have to wait and decide nearer to or on the day of.  I’m just not sure how I’ll be feeling from day to day right now and I don’t want to over-commit.”
3. OR: “I would love to accept! I am planning on being able to participate but if my body takes a down-turn, I may have to change plans at the last minute.  Are you okay with that?”

I have discovered that the honest approach best serves myself and others. Most of us want to “people please” and in doing so can create an environment of always saying “yes,” leading to feelings of stress and resentment later or a constant cycle of saying yes and then having to change our minds/plans.

By giving people an open look into your life, you are showing trust in the relationship.  As well, I try to always give people the option of letting me know if last-minute changes are uncomfortable for them.  Of course I wish everyone could be supremely flexible to my needs. But some cannot. And this is all part of accepting both my and others’ limitations.

You’ll also begin to discover the friends who truly do understand and are willing to adjust the typical “friendship guidelines” to maintain a relationship with you and those that are just “good time friends.” And that’s okay.

The week-end before last was one of those “seize the moment” opportunities for me.  A friend spontaneously invited me on Thursday to accompany her to Pittsburgh, PA for a one-of-a-kind puppet play by Heather Henson (Jim’s daughter- yes, The Muppets’ Jim!). Now, this was a huge risk for me. It was for just one night and would require a minimum drive of 6 hours both ways. Two “no-no’s” in my typical Boundary Box. But sometimes boundaries are meant to be broken, and this was one of those times.

Not only was it an amazing adventure and bonding experience with a dear girlfriend, it provided me a chance to be honest about my chronic illness in a way I have not before.  Traveling that close with some requires intimacy and vulnerability. And I was proud of myself for not hiding behind the mask of, “I’m okay.”

She knew I had to make many rest and stretch stops.  She saw my feet and ankles swell to the size of Nerf balls. She observed my nightly ritual of 20+ medications. She listened to me when I explained the complexity and history of my disease. She witnessed the “sudden coming” of a severe migraine. She saw me grow breathless because of my pericarditis (fluid around the heart) and the necessity of many “sit and rest” periods as we trekked around the city.

She saw the all of me. And she embraced and accepted me as I am.

Yes, I’m paying the steep price of admission still now 7 days post, but I wouldn’t have changed a thing about this experience. Can I always make this choice? No. But I am also not going to let my fears get in the way of considering similar spontaneous opportunities in the future. I used to always live my life this way… seizing crazy last-minute excursions left and right. And I forgot how much I love that.

I forgot what it is like to not only dip my toe over the edge into the Waters of Life, but to plunge head first into the icy chill of the thrill only to come up breathless by embracing the All of Life.

Where are you making choices in your life that serve not only your physical and mental needs, but also your spiritual and emotional needs? Perhaps you aren’t shying away from “frivolous experiences” because of the limitations of an illness, but because you are overwhelmed and stressed by the sheer complexity of living and balancing life, work and family.

Where and when can you throw caution to the wind, even for just an hour, and do something just for the sake of doing it?

Go on… life’s waiting for you!

Poked and Prodded, Jibbed and Jabbed

I realize that during the last three weeks I have been poked, prodded, squished, jabbed, plugged in, dilated, tested and re-tested.  No wonder I feel exhausted!  Since the beginning of 2014, I: have had my annual boob squish (yippee!); underwent cardiac testing; was “shot up” with my second infusion treatment (TNF Inhibitor); had an “invasive” G/I exam and tests; had the pleasure of my eyes being dilated while being chastised for not coming in annually (“you know, you do have a lot of underlying medical conditions that effect eye health”… duh!); got my monthly blood-work completed; was stung with almost 30 Botox injections in my head and neck; and then to top it all off … was submitted to two corticoid-steroid injections in my S-I joint (the hardest to reach=tailbone area) and my hip as well as three trigger point injections in my shoulder area (no numbing meds. with that one=double ouch!!). All in 21 days!

Yet, strangely, this feels normal to me. How weird is that?!

Just last week, a friend was telling me how exhausted she was.  She had just finished a day filled with two medical appointments, a flu shot and DPT shot, as well as some blood work.  And I understood!  Yet it also gave me a deeper perspective on what most able-bodied people find taxing.

And it gave me a great sounding board for helping her to better understand what my daily life is like.  Of course, I didn’t share this with her on the spot.  She had a right to her own exhaustion and some empathy from a caring friend.  Bottom line, isn’t that what we all crave?  But later in the week, I brought up her experience as a starting point…

I asked her to recall how depleted (and violated) she had felt on this day of appointments and tests.  I told her that I, more than most, could 100% relate to her experience.  Then I followed up with, “you know how you felt? Well, just to give you a little perspective, that’s what it is like for me 2-3 times a week, on an average week.”  I saw recognition light up behind her eyes.  And I realized that it is difficult for others to understand how the chronically ill feel on a chronic basis.  We all need a compass point to help guide perspective.

Another dear friend has often said to me, “I imagine how horrific it feels to have the flu.  And then I think of you, and try to imagine what it would feel like to experience that all-over pain and fatigue every. single. day.”  She sometimes follows-up with, “It makes me feel like crying.” Ah, me too.

So I realize these are all good starting points to increase the awareness of our “well-bodied” friends and family.  Our barometer for pain is at a higher set point than most.  We have to be that way in order to survive (and hopefully even thrive, at times!).

But it is also important, if we want to maintain honest integrity with ourselves and others, for us to attempt to explain what this means.  Being chronically ill is… a constant cycle of preparing oneself for upcoming doctor’s appointments and tests.  The emotional roller-coaster is taxing both pre- and post-visit: Is this the day I will get bad news or good news?  Is this the doctor that will have a new idea to help me with my illness(es)?  How many slips for subsequent tests will I leave here clutching today?  Can I even afford to go to the doctor’s today?  How am I going to get there; am I strong enough to drive myself?  Should I have someone with me so I am not the only one hearing the doctor’s words? Is this going to be another appointment with the summation, “I’m just not sure how to help you.” shrug.; Do I even get my hopes up?

Then there is the physical toll. Just getting ready for these appointments can be exhausting; sitting for long periods in the waiting rooms can be even worse.  Waiting in uncomfortable chairs (especially the hard plastic ones in the exam room!), can wreak havoc on a chronically ill body.  Then doctors like to (and, let’s face it, should be) physically examine your body, too.  Herein comes the poking, prodding, jibbing, and jabbing, all igniting flares of various “hot spots.”  Whether it is abdominal pains, muscular and joint pains, neuropathy, etc… we don’t like to be excessively touched!!   And are bodies will let us know this with a snowball effect of all over and hyper-aware pains (allodynia) throughout our bodies for several days after the appointment.

By the time we start to recover, it’s time for the next onslaught!

And, in between all these appointments, we want to live life… and not just inside the walls of hospitals and clinics!

We don’t need your sympathy.  But the next time you are feeling all-over exhaustion from a day at the doctors, an afternoon full of tests, or a bout with a cold or infection, think of us.  And give us empathy and understanding.  That’s all we truly crave.

Thank you.

Open Letter to “Normals:” Please Read

I came across this letter posted on another blog.  It was originally written to help understand what people with Fibromyalgia live with.  But it is pertinent to all the patients who are and family member of the chronically, “invisibly” ill. So I tweaked it a little. And would be forever grateful if you took a moment to read it (and share it)!

Open Letter To Normals,

These are the things that I would like you to understand about me before you judge me…

Please understand that being sick doesn’t mean I’m not still a human being.  I may have to spend most of my day flat on my back in bed or on the couch in jammies, and I might not seem like great company, but I’m still me stuck inside this body.  I still worry about school and work and my family and friends, and most of the time I’d still like to hear you talk about yours too.

Please understand the difference between “happy” and “healthy.”

When you’ve got the flu you probably feel miserable with it, but I’ve been sick for years. I can’t be miserable all the time, in fact I work hard at not being miserable. So if you’re talking to me and I sound happy, it means…  I’m happy. That’s all. I may be tired. I may be in pain. I may be sicker than ever.  Please, don’t say, “Oh, you’re sounding better!”  I am not sounding better, I am sounding happy. If you want to comment on that, you’re welcome. Happy ≠Healthy.

The same goes for “looking good.”  If I have the energy to, I like to put on a little make-up and a favorite sweater, maybe even curl my hair.  But looking good does not always equate to feeling good.  That’s why they are called Invisible Illnesses.  Looks can be very deceiving!

It is okay to say, “You sound happy today.”  Or, “I know you may not feel well, but you sure look pretty today!”

Please understand that being able to stand up for five minutes, doesn’t necessarily mean that I can stand up for ten minutes, or an hour. It’s quite likely that doing those five minutes has exhausted my resources and I’ll need to recover – imagine an athlete after a race. They couldn’t repeat that feat right away either. With a lot of diseases you’re either paralyzed or you can move. With this one it gets more confusing.

Please repeat the above paragraph substituting,
“sitting up”,
“walking”,
“thinking”,
“being sociable”
and so on  …. it applies to everything.

That’s what a fatigue-based illness does to you.

Please understand that chronic illnesses are variable. It’s quite possible (for me, it’s common) that one day I am able to walk to the park and back, while the next day I’ll have trouble getting to the bathroom.  Please don’t attack me when I’m ill by saying, “But you did it before!”  There is no formula to follow with my disease.  If I have the energy on one day, I will seize the opportunity and engage in the next present activity.  Just as likely (or even more so), I will get up with the intention of following-through on a plan, only to discover I am utterly exhausted after just getting dressed and will have to lie down.

If you want me to do something, ask if I can and I’ll tell you. In a similar vein, I may need to cancel an invitation at the last minute. If this happens please don’t take it personally (I’m just as sad and upset about it as you!).  I still like to be asked, even if I have to bow out.  It’s hard to have a chronic illness and to be excluded from events because you don’t want to make me “feel bad.”

Please understand that “getting out and doing things” does not make me feel better, and can often make me seriously worse.  Chronic Illnesses like Fibromyalgia, Lupus, Arthritis, M.S., Polychondritis (me!) and Abdominal Conditions, may cause secondary depression (wouldn’t you get depressed if you were stuck in bed for years on end!?) but it is not caused by depression. Telling me that I need some fresh air and exercise is not helpful and truthfully, incorrect – if I could do it, I would. And please understand that if I say I have to sit down / lie down / take these pills now, that I do have to do it right now – it can’t be put off or forgotten just because I’m doing something.

Chronic, Invisible Illnesses do not forgive.

Please recognize that I can’t spend all of my energy trying to get well. With a short-term illness like the flu, you can afford to put life on hold for a week or two while you get well. But part of having a chronic illness is coming to the realization that you have to spend some energy on having a life now. This doesn’t mean I’m not trying to get better. It doesn’t mean I’ve given up. It’s just how life is when you’re dealing with a chronic illness.

If you want to suggest a cure to me, please don’t. It’s not because I don’t appreciate the thought, and it’s not because I don’t want to get well. It’s because I have had almost every single one of my friends or family members (or friends of friends, for that matter!)  make a suggest at one point or another. At first, I tried them all.  But then I realized I was using up so much energy trying a myriad of treatments and “cures” that I was making myself sicker, not better. If there was something that cured, or even helped, people with Fibro, CFS and all the other “invisible illnesses,” we’d know about it.  This is not a drug-company conspiracy. There is a worldwide network (both on and off the internet) between people with chronic, invisible illnesses, and whenever there is a new, valid treatment option available, we already know about it (mind you, they are far and few between).

We’ve had to find acceptance in the frustrating fact that medicine has not caught up with the growing cases of autoimmune illnesses. The best support you can give us is to accept this fact yourself.  To accept us as we are, not as you would want us to be.

If after reading this, you still want to suggest a cure, then do it, but preferably in writing.  Please don’t expect me to  rush out and try it. If I haven’t had it suggested before, I’ll take what you said and discuss it with my doctor. Please understand that getting better from an illness like this can be painstakingly slow. (pun intended!)

People with Autoimmune Illnesses have so many systems in their bodies out of equilibrium, and functioning wrongly, that it may take a long time to sort everything out. Our bodies are literally attacking themselves and there is no pattern that doctors or patients follow.  Each of our cases is unique and varied.

Don’t misunderstand me, I depend on you – people who are not sick – for many things.  But most importantly, I need you to understand me.

Thank you for your compassion,

The Invisibly Ill

Going Just Beyond…

A friend shared an alternative approach to creating New Year’s Resolutions. For the last three years, she has chosen a word that defines what direction she wants to head in the upcoming year.  Instead of listing “specifics” she meditates and visualizes her hopes, wishes and dreams and then categorizes them under an umbrella term; used as her motivational mantra throughout the year. For this year she was vacillating between love and courage, thinking about using both. Then through conversations with others, she realized the recurring word that kept popping up was “connection.” And as she said, “I have found that the word I settle on, most often finds me, not the other way around.”

By focusing on this one small, yet enticingly expansive word, she will walk through the coming 365 days deepening her connections with herself and with others, while staying in tune with the connectivity we can all experience, when we dip into the well of our shared roots.

Just a few days after this conversation, I happened upon an article in our local paper, “My Life, My Words; Three Little Words Have an Impact.”*  In it, Kristine Bruneau writes, “Since 2012, I’ve chosen three words to inspire and guide me along the path of achieving my goals.  At the end of the year, I reflect on how well these words have helped shape my efforts.” Her three words for the coming year are “restore, integrate and teach.” For the year just past, they were “amplify, connect and share.”  They are a trio of interconnected words, which seem to act as stepping stones to growth.  The first, a verb, “takes action”; the second exemplifies how she will integrate the first tenet into her own life; and the third, how she will spread this to the world beyond herself.

Whether one word or several, both approaches are positive and action oriented.  When focused on the solution rather than the problem, you automatically walk in a positive, forward moving direction.

By setting a word, or words of intent, you are practicing the Law of Attraction. 

For the last couple days, I have opened up my mind to receiving a word that describes what I want to attract in the coming year.  I meditated and prayed, and allowed the first word that came into my mind to sit and stew for a while.  It was an unexpected word.  Some may even say an odd word choice.  But the more I let my mind tinker with this idea, the more I realized it encompassed all my hopes, goals and dreams.

My word for 2014? — “BEYOND”

I want to reach just beyond my comfort zone into the unknown realm where growth occurs.  I want to re-discover my hidden talents; I want to experience life as it is, and then take it just one step further.  I want to reach beyond myself to help others and the world.

Thinking beyond is going to help me “feel my fear, and do it anyway.”  When I am about to embark on a new or different endeavor, and my fear (of failure, of the unknown, etc.) tries to stop me, I am going to pause, breathe and reach just beyond that fear into the landscape of trust. I am going to take my life just one step further.

I am going to remember this one-word phrase (hmm… oxymoron?!) whenever I am faced with a daily decision, choice or activity; I am going to pause and ask myself, “what would going just beyond look like?” 

The same goes for facing disappointment. Instead of focusing on “why life didn’t turn out the way I had imagined,” I am going to look for the hidden land of opportunity that lies just beyond the field of disappointment.

This word will help define the direction in which I want to head; but I am not concerned with defining what that will look like, what that will feel like, or how I will exactly get there.  That part I’m leaving up to God and the Universe.

And I can’t wait to see what happens!

Some questions you may want to ask yourself when choosing your own Word (or words) Of The Year:

• In what area of my life do I want to grow?
• What do I want to learn more about myself?
• How do I want to more deeply connect with my community? Family? Friends?
• What am I afraid of?
• What have I wanted to try that I haven’t yet?
• Where do I see myself in one year’s time? (in my personal relationships, in my financial stability, in my career, in my state of wellness?)

Then take a deep breath, close your eyes, relax your body, and exhale. What is the first word that comes to mind? Hold onto it, follow it, see where it takes you… and then come back here every once in a while to share your experiences with this annual exercise!

SOURCE: * Rochester Democrat and Chronicle, ROCarts, Section 2C