Tag Archive | Balance

To: Chronically Ill at Christmas Love: Peace

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As the holiday week began in earnest last night (for both Christmas and Hannukah), I send extra love to my friends with chronic illness. As one friend recently reminded me, constantly fighting this sh*t is HARD!

Which made me think… at least 15% of society does not get any holiday time-off. Yet friends and family, and lets face it, ourselves, have pretty high expectations of our energy and ability to engage in all the same activities we used to do, pre-illness.

Living with chronic illness is a FULL TIME JOB. No holidays “off,” no vacation or calling in a “me-day” on accumulated sick days, no summer vacation, no breaks for our birthdays.

I certainly don’t mean to be morbid! I am just standing in solidarity with my chronically ill brothers and sisters. Because we still try to put on our Santa hats and reindeer bells and look festive on the outside while we feel awful inside. Our hearts want to receive each and every hug, but our bodies pray for not another pain-full squeeze.

For me, my body tenses up. Its almost like an unnecessary fight or flight reaction. So that I many times don’t feel the overwhelming fatigue and pain until I sit down at home post and my body desperately goes into spasm.

So please remember this holiday:

We may need to be selective about how many events we go to in order to conserve and stretch out our energy reserves (our “spoons”).

* We may skip the more crowded events in exchange for more intimate gatherings. Large groups can by over-stimulating and overwhelming and very fatiguing.

* Our schedules may seem unconventional. This year for example, I did church on Christmas Eve with my family, and then we’re not exchanging presents until the 28th. My husband and I cap off the holiday week with celebrating Our Christmas on New Year’s Eve and Day. Its not like I can go out on the town to ring in the New Year anymore!

* The hardest limitation I’ve had to enforce, is cutting out friend activities: Friendsgiving, White Elephant and Secret Santa, Cookie Exchanges, … In exchange for being able to participate in family celebrations.

It has taken me many, many years to come to this balance. And I still struggle with missing out, and even worse, disappointing those I love.

Family and friends can be so incredibly understanding and supportive. As long as I explain the place I am coming from. And the very few that don’t, aren’t worth any of your energy.

Am I miffed at my illness. Hell, yeah! It’s a freakin’ 24/7 job. I can’t take my body off, like a scuba suit, and set it in the corner for even a 5 min. break!

Do I feel melancholy? You bet! I miss walking through cities and malls to look at the holiday displays with Christmas music floating all around me; joining the local town Christmas strolls and tree lightings.

BUT I REFUSE TO LET MY DISEASE TAKE ANY MORE OF MY LIFE! I love Christmas! So I’m not going to compare what I can or cannot do. I am going to appreaciate the beauty of every moment I AM well enough to experience. No matter how small. We have been given one special gift through illness, to recoginize hidden hope and miracles that others miss.

So to my over 15% of FaceBook friends (that I know of) with daily chronic illness, you are not alone! We celebrate  together!!

And to our friends and family, thank you for you understanding, your patience (especially when we’re running late or cancel last minute), for your gentle hugs, and comfiest chairs. We feel grateful for every moment we get to spend with you!

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Inviting My Inner Critics To A Tea Party = Courageous Living

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I have decided to make friends with the Critical Voices in my head. I imagine inviting them all for tea and a round table chat—welcoming them in instead of automatically shutting the door in their faces, which is what my defense-mechanism gut is urging me to do.

I will let them know that I have invited them over to listen to and hear the value in what they have to tell me, observations they may have after years of “hanging around” my life. But that I will also accept these words with conditions. I honor and respect myself enough now to do so.

Historically, these voices have presented themselves in un-helpful ways:

  • They speak in black and white; they tend to have no “grey zone.”
  • They show up as voices of reason, which can be confusing. But instead of “You’re not ready yet; maybe later.” I am ready to shift their thinking to:  “You may not be ready right this moment, but let’s see how we can get you  there.”
  • They can be repetitive. We know, intuitively, that they are irrational, but their persistency can be deceiving.
  • The more we resent these voices, the more they gain power over us. But when we try to form a healthy relationship with them, space opens up; for more kindness, love, compassion and understanding– for ourselves and others (we all have these inner critics).

So, let’s start with an example. It’s a biggie, for me:

My Critic often tells me: “You won’t be able to achieve (or even begin to attempt) this desired dream/goal of yours, until you are physically better. Until then, it’s unrealistic to push forward with this endeavor. It will only be frustrating and create overall, unnecessary distractions in your life.”

I am now going to respond differently to this old introject of fear and negativity:
“I can tell your intention is loving. But the majority of your words are simply untrue. And all they serve by my believing them, is for me to sit and wait for this far off ‘perhaps I’ll be better future.’ Or even more detrimental, they have convinced me to believe that I am not good enough, complete enough, whole enough. Now. As is.”

Then I am going to reframe this original feed-back:
“You have shared some useful information with me. But a more loving and helpful way of speaking it would be …”

“I can see that you have some exciting dreams and desires right now and that your physical limitations have created an impediment to you achieving these goals. So instead of ‘waiting to get well’ I would like to lovingly point out some valuable ways you can achieve your goals: you cannot continue to go this alone. What support, physical and mental, can you access and/or welcome into your life to help you make attainable and doable steps towards your goal? What modifications need to be made to your overall goals so that you can set yourself up for success instead of failure?”

And, here’s the miraculous thing, once I made space for this critical voice in my life, I opened up my heart in new and expansively loving ways. Suddenly I was seeing possibilities instead of roadblocks! And my Inner Judges switched from being critical to critically thinking.

I realize I’ve let this repetitive Critical Voice begin to re-define who I am, and even more so, who I am not (or not capable of being). Constantly telling me what I cannot do, until X, Y and Z happen… until all of my cosmic stars align!

I think we can all relate to this on some level. For we all have Inner Critics. And many have become life-long roommates, hogging up head space since as far back as childhood. Yet, we try to get rid of or ignore these inner voices instead of integrating them.

Kate Swoboda says, “In truth, your Critic is your ‘best friend, with lousy communication skills.’” They are the scared wounded parts of ourselves that deserve compassion instead of distaste.

I, who doesn’t see myself fundamentally as a black and white thinker, had become one. I truly began to embrace these Critic’s voices as my own- as my one true voice- until the point where I thought I was doing myself a service instead of a disservice by listening to and heeding their messages.

They caused me to re-write my story: because my body isn’t currently equipped to truly meet my goals, “reaching for the stars” just isn’t in my current repertoire.

Believing that whole “lower my expectations, so I don’t set myself up for disappointment.” But all this has served is to create disappointment. In life. In my body. In Myself. Leading to resentment.

Yet, what I learned through an amazing workshop called “Your Courageous Purpose,” by Molly K. Larkin is that these critical voices can and do serve a purpose.

Listening to them, welcoming them to my round-table, has opened me up to hearing what’s really going on. How I really feel about the situation; allowing all the big, ugly feelings in first like anger and sadness, before the healing can begin. And then creating some solution-oriented, forward-focused thinking.

So, let’s boil it down to the basics:

  • My body has physical limitations.
  • I do not know when, or even if, this will ever change.
  • Waiting for things to change or “get better” isn’t working. IE: it isn’t serving me or my highest good.
  • In the past, when I have reached out to others or openly welcomed their offers of help and support, I have been able to achieve unimaginable goals and dreams, in spite of my physical impediments.

So instead of the “wait and see approach,” wouldn’t it be more beneficial to ask myself some critical questions:

  • What do my current goals and dreams look like? Feel like?
  • What are some modifications I could make that would allow them to be more manageable? How do they look and feel post-adjustments?
  • What are the most important aspects of my dreams (the ones I have the strongest emotional attachments too)? Defining these will help me clarify which parts I can more easily let go of and which ones are the most important for me to hold on to and make work.
  • Now that I know the most important parts of my dreams, how can I make them possible now?:
    A. What are small, “bite-sized” steps I can take today to move towards these dreams?
    B. In what ways can others help me in reaching these goals?: Ways others can help/support in the actual achievement of the goal. Or ways they can support in other areas of my life (cleaning, shopping, etc.) so I have the energy to take small daily steps towards my goals.

When doing this process yourself, stay aware of what additional Judges pop up. Old ones, new ones, old ones in new ways. What are they saying? What do you need to acknowledge in their messages? Is there any useful information hidden in the Critical Voices?

For example, just in the process of writing the above exercise for myself, I heard an old judge begin to persistently whisper:
“You’re being selfish. If you have any physical energy on any given day, it should go towards taking care of your home, to supporting your husband and others. Then, if there is anything ‘left over,’ you can reach for your own dreams.” Which translates to: “Your needs/wants aren’t worthy.”

Obviously, this is a multi-layered process. Where did I put that handy-dandy onion peeler again? The one that removes all layers in one swift motion, with no tears? Ha. If only!

But that’s the gift of removing one layer at a time.

So who are you courageous enough to invite to your round table today? I guarantee the process will pay off in the end. Setting yourself free to live the life you are meant to be. Now, that’s Courageous Living!

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May I Decide For You?

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Why do we profess to know what’s best for others? Especially loved ones? Is it because we think we know them intimately more than they even know themselves? This is something that often happens with those battling chronic illness and daily limitations.

Our loved ones, out of fear of pushing us too far (IE: making us “sicker”), make decisions based on our well-being without ever consulting us. Many times, these decisions are made behind closed minds, during the pre-conversation/contemplation phase and we never even know different possibilities existed. And because they are never presented to us, we are never given the opportunity to make our own choices (and, yes, even mistakes).

The decision has already been made for us, under the guise of “loving-kindness.” I know that I have been on the receiving end of this kind of decision making multiple times, especially from my husband. My most recent example occurred in an interaction with a dear friend:

Over the last couple years, I have been mentoring this friend. I was, from the beginning, clear and honest about my physical time limitations but committed to communicating in alternative ways; and asked that if our relationship agreement ever stopped working because of these restrictive parameters, she not hesitate to approach me about her changing needs. We went into the partnership with what I thought was an equal agreement. Then, just a few days back, she abruptly let me know that our arrangement was no longer working and she had already found another mentor.

As much as I respect her needs, I was taken aback by the one-sided decision making. When pressed, she explained that she honors the physical place that I am in and would never want to put un-due pressure on me. So she found someone more “well-bodied” and flexible with their schedule. She thought she was coming from a place of loving-kindness.

But, in fact, she took equality right out of our equation. Out of concern for pressuring me, she took away my opportunity to know and express what is right for me. To check in with my own body and decide whether I could do more to meet her needs or not.

What was removed from our relationship was trust in the other person to know themselves, and respect for whatever decision they make. Regardless of our own opinion.

Let me highlight some ways we all do this in relationships:
– Our partner gets anxious in social situations, so we avoid telling them about upcoming engagements until the last minute, so they don’t unduly fret.
– Our parent worries when we travel, so we hide trips from them until we get home, as not to overly stress them.
– We have friends who have chosen to no longer drink, so we don’t invite them to events where there will be a lot of “celebrating,” so they won’t be tempted.
– A co-worker tends to react strongly when asked to do a project, so instead of giving them the chance to process and respond, we just do everything ourselves to avoid a possible conflict.

We tell ourselves “loving-kindness” stories: “I don’t want this (person I care for) to feel bad/sad/disappointed/stressed/worried…” We’ve already analyzed the situation in our heads, come to the conclusion of how the choice will negatively affect the other person, how they will respond, and what we will do to avoid this.

But, remember, when you make a choice for a loved one, you are no longer looking at them as an equal.

Those of us with chronic illness often struggle with feelings of being “less-than” (as many well-bodied folks do, too!). We already have to limit so many facets of our daily lives. But, we can still make conscious, thoughtful decisions for ourselves.

Doesn’t every adult want to be perceived as trustworthy of their own truth?

And the thing is. . .

We very well may make poor decisions! We may over-commit which over-taxes our bodies or minds.

BUT… that’s how we learn. How much is too much. And how much is just right.

If the right to make our own choices is removed, we are never able to find the balance on our own.

One of the worst things, is discovering after the fact that you could have been a participant in the decision making process, and that was taken away from you. It’s way worse to learn later that a group of friends went out dancing but didn’t invite you only because they didn’t want you to feel bad because your body is ill-equipped to dance right now. A much better scenario is to be given that choice and decide whether you want to sit and watch at the club or if it’s better to stay home, but it sure felt nice to be including in the invite!

So, next time you find yourself making a pre-emptive decision for another out of loving-kindness, try for a different approach:
– Tell that person about the choice and kindly express your concerns for their well-being.
– Let them know you trust them to make the right decision for themselves in that moment.
– Remind them that you’ll support whatever choice they make; and will give them the respect of keeping lines of communication and gentle observation open.

In all interactions, remember that a partnership means that each party is on equal ground.

Is It Beautiful or Useful? Resolution for 2015

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I remember hearing this sage Feng Shui advice: when de-cluttering your living or working space, look at everything in your environment with the discerning question: “Does this object bring beauty or is it useful?” If it is neither of these things, then promptly throw it out. I have decided to apply this principle to other aspects in my life in the New Year.

This is my so-called “New Year’s Resolution.”

When you live with a daily chronic illness, as I do, time and energy are hot commodities. I have to make discerning choices as to how I am going to expend my limited resources. But it can be difficult at times to determine what the right choices are. Especially when you start to factor in concerns over other people’s feelings and obligations you feel you “should” fulfill.

Then I realized, what if I ask myself the above question: “Is this activity going to bring beauty/joy into my life or is it useful?”

In the first category are all the activities that bring me the most fulfillment, spiritually or emotionally. They are the things that make life worth living. They are the little bits of sunshine that carry me through the cloudy moments; the Beacons of Hope amidst the storm that will surely come.

The second category may not bring an immediate sense of happiness or beauty, but are necessary tasks for my continued survival. These are doctor’s appointments to maintain my state of being, procedures to treat my health, daily exercise to “oil” my joints and increase my mobility, keeping my living space free of clutter, and taking time to plan and prepare healthy meals. Also, landing here, is taking the time to evaluate things I cannot do on my own, and then asking for help from others.

It’s much easier for me to fill up the list with “activities that bring beauty and joy into my life.” And, as much as I need to look at the pile of activities that bring me joy, and rate them from “most joy” to “least,” just by asking the initial question, I have already weeded out all the things we as humans engage in just because we think it is what we should be doing, or what others expect from us.

Going to work each day, even when it is not the most satisfying, is useful because it brings home money to live and thrive. Going to lunch with a co-worker that generally annoys just because you are afraid to say no, is not useful nor beautiful. That time could be spent doing an activity for 45 minutes that feeds your soul so that you can return to work more light-hearted.

For me and others with chronic illness, we have what has been coined as a “limited amount of spoons” each day. Every time we have to expend energy (any amount), we have to give up a spoon (or two, or three). Once our daily allotment are gone, they are gone. Too often, I forget this. I start trying to hand out forks and knives, items that really are only on loan and carry a steep penalty. I am borrowing against myself. And then I will pay in the days following when I have nothing left in reserve and my body shuts down. Completely.

This year, I want to do differently. I want to respect my body. To honor its limitations. To realize that if I pay heed to the true amount of energy I have then I can enjoy a small amount of truly meaningful activities each day.

I want to recognize that many times the activities that bring the most beauty and joy into my life are ones of quiet solitude. Moments of peaceful participation in painting or writing or reading or just sitting and listening to music.

I want to pause when someone invites me out for an activity and listen inward to see if my heart is singing with the beauty of this possibility. Or, if it is sighing with resignation because I feel like I need to fulfill an obligation.

It has only been just under one day into the New Year, but I have already applied the “Beauty and Usefulness Principle” to each moment of this day. And, you know what? It has both kept me fully present and making conscious choices throughout my day, big and small. I have balanced my choices by spending some time throwing out old clutter (useful) and prepping a canvas to paint sometime in the next few days (beauty/joy). I have kept each activity short, with periods of rest in between.

My heart feels full and satisfied.

Try out this barometer question when facing various choices in the next several days, and see where your heart leads you.

And may reading this give you support if you live with chronic illness, or understanding if you are a friend to someone struggling daily. When we have to say no to an invitation, it isn’t saying no to you, it is recognizing and honoring our own limitations. By staying true to ourselves, we are true to others.

HAPPY NEW YEAR!!

Striking Balance and Scheduling “Me-Time”

 

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This clear message to focus on self-care appeared on my daily calendar right on the heels of a similarly veined conversation with a friend. We were discussing our recent struggles with being over-booked; striking a balance between committing to too much and leaving enough space for down time.

The struggle with balance is not new. We toss around this subject with regards to our diets; to love, life and work; to our children and our partners; to our hobbies versus our paid endeavors… the list goes on and on.

But what often gets thrown out first is time spent dedicated to just being. To replenishing the spirit. To feeding the soul.

To taking time to love yourself… so you then have the capacity to love and care for others.

To saying, “Stop! Enough is enough; it’s time to fit in some me-time!”

Our society does not encourage this habit of self-care. We live amongst a go, go, go mentality. The idea that if you say no to one opportunity, another one will never come your way. That if you take time to pause and rest, someone else will take your place.

When my body fell off the gerbil wheel and effectively shut itself down as my autoimmune disease announced it was now taking over control of my ability to do or not do, a new challenge arose in the strive for balance. A similar struggle is heard echoed by friends with various chronic illnesses (mind and body). We spend so many days as slaves to our disease, that when we have a “good patch” we want to take full advantage of it. So, we too, push, push, push, until we reach overload and crash.

I recently read about why we have resistance to letting go of these patterns of behaviors. It comes down to one of two fears: 1. A fear of losing something we already have or 2. A fear of not getting something that we want.

When stripped down to this straight forward approach, my friend and I could clearly see the impasses in our behaviors. For her, it was an abundance of exciting opportunities to suddenly participate in the craft she loves. She feared losing this new-found standing in the community as a respected musician. And was afraid to say no to even one opportunity, leading to being “put off the list” and never asked again. As well, she feared losing this dream. She had prayed and the Universe had delivered; how could she turn down that?

For me, I didn’t realize it came down to such a blunt answer until I said it out loud. I fear losing my life. I fear that each day may and well be my last, so I certainly do not want to squander what precious time I do have, and the beautiful opportunities presented to me to spend that time. For me, it was (and is) this insane grasping at all life has to offer after another extended hospital stay.

So where does one go from here? …

The first step is asking yourself that very same question, “What am I fearing right now?”

Then it’s reminding yourself that you are no good to anyone, especially yourself, if you do not incorporate “me-time.” You could say yes to everything, forgetting your own needs in the process. Think back to times you’ve made that choice. Many times we run ourselves into the ground to the point where we may show up for each thing, but are not wholly present for any one thing.

Remind yourself you have choices. My friend decided to keep her present commitments, but to not commit to taking on anything new for the fall. As for losing out? She can let these generous offerees know that she is fully booked now, but is still interested and would like to check in with them in December.

Me? I listed my obligations and put them in order of priority. What is most important? I had to cancel almost half of my “dates” and trust that there will always be something new around the next corner. Also, I will be better equipped to fully enjoy the choices I “kept” because I put moments to pause in between each.

Which leads me to the most important suggestion I have…

Look at your calendar right now and schedule time for yourself. Yes, at least a full hour of “me-time.” Put a big X through it. Do not attach any thoughts to how you are going to spend this time. This is truly down time… you’ll know what you need when you get to it. It is NOT a time to do errands, or catch up on work, or clean the house, blah, blah, blah! Do something that recharges your soul; whether that’s a nap; a walk in the woods; or watching funny kitten videos on YouTube. This is your time — relax, rejuvenate… refuel.

Your first reaction may be the same as my friends, “but what if I schedule it during a day/time that I don’t really need it?”

It doesn’t matter… take the time no matter what. Treat it as responsibly as you would any other appointment with a colleague, doctor, etc. You wouldn’t cancel or double book on someone you respected, so don’t do the same for yourself. Respect yourself as highly as you do others!

Once you get in the habit of honoring yourself with a “me meeting” each week (or several times a week!), your mind and body will start to naturally remind yourself when it’s time to fit in some self-care.

I have shared this idea with some who have met it with aplomb, and others still that have great resistance to the idea. But, can you honestly say you can not find one chunk of time (just 30 mins) that you can dedicate to yourself for just this week?!  At least give it a try…

This is the first step in retraining yourself to put yourself first.

So that you may be fully present in all things and for all others.

Toeing The Elusive Line of Life

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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!

Feeling My Feelings: I Can Be Both Strong and Emotional

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So, time for another round of back injections.   A true pain in the butt!!  Yet, I was taking it all in “typical day stride” until I told a new friend yesterday that I would not be able to get together today; explaining that I will be otherwise indisposed.  And her reaction surprised me.  I recently found out that she, too, has an autoimmune disease.  We don’t know each other well enough to share details but I assumed she was familiar with the constant juggle of symptoms, pain, treatment options, appointments, etc.  You know, the ol’ Chronic Condition Round-Up:  “Admission is steep, but the ride is never the same!”  And I am sure she has her own daily struggles, but her gut reaction to discovering I was going to have corticosteroid injections was filled with compassion, awe, and even a little fear.  She instantly responded with “Oh, bless you!  I am so sorry you have to go through this ordeal!”

Ordeal!?  And that’s when I realized, it is an ordeal.  I am so used to being poked and prodded, that I have become numb to it all.  And, truly, this has been a very effective coping mechanism.  I think if I let down all my defenses, I would become paralyzed.  Because when I pause to think about everything my conditions entail on a daily basis, it is extremely overwhelming. And when this friend so clearly reacted to this, I became uncomfortable.  She was shining a light on my dirty little secret: my life is hard.

Three weeks back, I was “poked” in one form or another 3 out of the 5 days.  It began with a PPD test (Tuberculosis), no big deal but a prick just the same.   This was just the warm-up though; on that Wednesday, I had double corticosteroid injections in both my sacro-iliac joints (tailbone) and my bursa (hip).  Then I rounded out the week with 20+ Botox injections in my forehead, temples, and neck (for cluster migraines); imagine being stung two dozen times in less than 10 minutes!  And again, when I relayed my weekly adventures to friends and family, it was like I was informing them of that week’s weather patterns.  “Oh a small storm front came through in the middle and end of the week, but for the most part, skies were clear and sunny!” My voice was even, the facts were relayed without feeling; I had lost all affect.

Perhaps I need to pause.  And hold my own space for a little bit.  To give myself a hug.  To let myself know that I am proud of the strong and resilient woman I am.  To cry for all I have to endure on a daily basis.  To mourn for the pieces of “normalcy” I have lost, and will never regain.  To celebrate the Survivor that I am.  To appreciate and honor the fact that I don’t let my illness consume the all of me.  To feel my feelings, whatever they are.  To just be.

I get uncomfortable when others are sympathetic to my plight.  I still struggle with vulnerability.  And in accepting that others don’t view me as a “sympathy case,” they just have empathy and respect for my daily struggles.  And even more so, for how I choose to handle these situations.  Those are the pieces within my control.  And it’s okay for me to have pride over my tenacity and courage in the face of some very difficult daily hurdles.

Each day of my life is like walking through a field of landmines.  They’re old landmines, some are deactivated while others are extremely unstable and reactive.  I never know which one is going to go off or when I am going to trigger a reaction.  Prime example? The Steep Price of Admission I paid for going to the movies with a girlfriend the other day.  But even since then, my body has been “a-buzz.”  It’s like a feeling of after-shocks that will suddenly shoot down my arm or explode up my spine; intermittent and completely unpredictable.

And then lying amongst this field of mines, are hurdles.  Those steep inclines I know I’m going to have to muster the strength to surmount.  Like today’s injections.  I know in the long run they will (hopefully) provide relief.  But in the short term, I have to accept increased pain and aggravation of my symptoms.  I also have to measure the risk of even trying these treatment options that provide sporadic results.  The sacro-iliac joint is the most difficult joint to inject.  It’s nestled deep amongst tissue (nerves, muscle, connective) and is a very small opening.  I’ve observed them searching for it on imaging, watching this enormous needle poking around inside me trying to find the sweet spot.  There is no guarantee that it will hit its mark.

And that’s where I just have to remember to bring it all back to today, to the present moment. Because if I (and many of you!) were to let my mind expand and wander into the days before and all the days to come of this illness and its trials and tribulations, I would curl into a ball like a potato bug and hide forever behind a hard shell.   This is not an acceptable answer for me either.

So, where does that leave me, today?  The conversation with my friend yesterday and my meditation on this today, has given me a clear direction.  It’s time to re-focus my energy on Balance.  Often, I equate this with the delicate balance of doing just enough activity (not too much, not too still) that will support my body’s health without sending it into a flare.  But, today, I need to practice Emotional Balance.  Giving myself the space and the permission to feel the emotional effect all of this has on me; to honor the wear and tear it takes on my mind and spirit.  But this “delicate balance” comes into play in feeling my feelings just enough and then letting them go, finding acceptance and peace in them, sharing them with a friend so I am not alone in my pain and fear.  Letting my feelings flow through me, but not get stuck within me. 

Where do you need to create balance in your life today?