Tag Archive | fibromyalgia

Fluent in the “Language of Pain”

Pain and wisdom

A recent article in U.S.A. Today discussed the “health care crisis” of chronic pain, stating that 40% of Americans now experience chronic pain… 40%!  Just think about that for a moment.  Thankfully, research institutes are also finally paying attention to this startling statistic and studying ways to treat this epidemic.

What stood out most to me in the article is the description of what happens to a being when they experience unrelenting pain.  We learn to become fluent in the Language of Pain.  It’s the old “practice makes perfect” adage. But in this case, it is completely unhelpful.

Our bodies and minds are wired to learn new habits and behaviors through repetition.  The article states:

“In a sense, chronic pain is not all that different from learning to play the piano or speak French.  The more the body ‘practices’ processing pain, the better it gets at it and the stronger the connections between nerves becomes.”

It speaks of a term, us chronically ill are all too familiar with, “allodynia.”   Allodynia is when pain sensations are so out of proportion with the reality that even the slightest breeze on the skin, gentlest of hugs, or softest touch of a feather, can feel like scalding water, the burn of a blowtorch, or thousands of needles stinging the skin all at once.  This can be a very frustrating condition to explain to “non-sufferers.”  How do you tell someone, “I’m sorry, but your hug hurts me,” without hurting their feelings?!

Chronic pain is defined as pain lasting 6 months or more.  It can be triggered by illness, but also by post-surgical pain that doesn’t go away, injury (even after it is technically “healed”), aggressive medical treatments (especially those for cancer), and chronic conditions such as arthritis, back pain and headaches.

Chronic pain effects 100 million Americans and costs between $560-635 billion dollars per year, yet doctors only receive 9 hours on average of pain education during their entire medical school education!

One of the sacriest facts is that it causes permanent damage to the body.  Chronic pain can literally shrink the brain.  It can reduce gray matter as much as 20 years of aging does!! (according to research at Northwestern University)

The biggest enigma of the pain puzzle for me, is the incongruity of my own personal pain responses.  I actually have an extremely high tolerance for pain when it comes to injury, injections, and other invasive procedures.  And then there’s the flip side… my body can be triggered by God knows what (I always equate it to having a switched flipped). When this happens, I am writhing in pain, the touch of the lightest sheet on my body can trigger what feels like an attack on my body… my nervous system is on fire.  I would sell my soul to the devil to make it stop!

Hence the pain conundrum!

And also the reason why scientists state that suicide rates are twice as high in people with chronic pain.  Chronic pain is highly unpredictable and volatile.  And, currently, extremely mistreated and misunderstood.

Although, they are starting to discover that there are several non-invasive, non-drug treatment options for “quieting the pain.”  I have found many of these helpful (when I remember to employ them!) and I would be interested to hear what techniques others use to treat this painful condition.

  1. Exercise:  This can be the hardest to start because when we are in the midst of pain, our minds tell us to be still; we are terrified that if we move, it will only get worse.  But this is the exact opposite from the truth. The USA Today article states, “Exercise is as close as there is to a magic bullet for pain.” Hazzah!  I think of it as re-training the nerves, muscles and brain (just as it has been conditioned to feel pain at every turn).  I started riding my exercise bike daily 2 months back and it has changed my life.  Now when I am having a particularly bad flare of pain, my body actually “tells” me to get on my bike and move. And it works! Truly. NOTE: It may be helpful to begin a exercise program in a warm pool.
  2. Acupuncture: Once dismissed as little more than a “placebo effect,” newer studies in (objective) mice show that acupuncture stimulates adenosine, a powerful pain reliever made naturally in the body.  And studies in humans are showing that after acupuncture, there are powerful changes that occur in the nerve pathways, running from the brain to the rest of the body (an important way the nervous system can control pain). Has anyone had success with this?
  3. Massage: I swear by this! I see my massage therapist every 2-3 weeks and she has changed my body’s response to painful stimuli. My recommendation would be to find someone trained in therapeutic/medical massage that will work long term with you; make sure it is someone you can clearly communicate with. When I first started, my therapist could only “rock” parts of my body until I got used to touch. Now, even when my body is “on-fire,” it responds positively to her touch; she quiets the hyper-active nerves. There is no one else I would trust to touch me.
  4. Cognitive Behavior Therapy, Meditation and Bio-Feedback:  All treatments that use the mind to quiet the body.  I use guided meditations daily and can now almost “leave my physical body” when it is in pain (not always, but often). I know people who have had success with formal bio-feedback training and EFT (Emotional Freedom Technique or Tapping Therapy).

There are other treatment options, not scientifically proven, but people have found comfort with:

  1. Chiropractic Care
  2. Magnet Therapy
  3. Reiki
  4. Heat Therapy
  5. Hydrotherapy
  6. Electrical Stimulation (TENS units)
  7. Ultrasound
  8. And what I like to call: “Distraction Therapy:” engaging the mind in another activity (something simple and repetitive like knitting, coloring, zentangles, bead stringing, crosswords or puzzle books, music, silly kitten videos!, etc.), until the pain becomes distanced from your physical body. This works wonders for me!

Please share your pain coping techniques, so that we can all benefit from the shared experience of this “painful” condition (pun intended!).

If you are interested in reading the full article, follow this link:

Chronic Pain: A Health Care Crisis

Also, here is a link to the American Chronic Pain Association:

ACPA

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Open Letter to “Normals:” Please Read

understanding quote

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

Shine On, Soul Beacon, Shine On!

lighthouse

I have mentioned in many of my posts the idea that each of us has our own Soul Beacon. This is a concept that came to me organically during a moment of extreme illness.  It was a vision and even more so, a “knowing,” that I felt soon after my first near death experience. I was in a “stripped down state,” mentally, physically and most certainly spiritually.  I felt raw and exposed.  But, in this vulnerable state of being, I opened myself up to being completely vulnerable.  I felt as connected and observant as a child when discovering something new in their environment.  I became aware of the flow of energy between people.

I started to notice that energy exchanges could be both positive and negative; they could either lift one up or drain them entirely.  This was not just a feeling; I actually visually experienced this phenomenon. That insight gave me an intuitive knowledge of human interactions that I hold to this day.  When people exchanged laughter or encouraging words, streams of soothing, white strands of light would connect the interacting parties.  I saw this as a “recharging of the soul.”  It was pure energy, being given and being received.

Conversely, when an exchange was less then pleasant or supportive, there wasn’t a free-flowing exchange of energy. The flow would become heavily one-sided, with one party literally “sucking the life” out of another. This would show itself in forms of jealousy, fear, anger, insecurity, and dominance.

I had a clear vision of a beacon of light.  I saw that each of us is born with a cache of energy.  But just like any form of energy, if it is not recharged (refueled), it will deplete.  And when our energy sources are low, we experience depression, illness, sadness, despair, fatigue, hopelessness, and diminishing spirituality.  Most people respond to this feeling by hoarding the small amount of energy they have left.   We don’t share this energy out of fear of running on empty.  But in that hospital room, I discovered the key to unlocking a never-ending supply of energy.  The key is…

You have to give your energy away in order to receive more for yourself.

Give it away?! Yep.   This is where the concept of a Soul Beacon comes in.  Imagine a lighthouse.  The night is foggy and therefore the beacon’s light source barely reaches beyond its own standing.   Now translate that to the situation I spoke of above.  You’re feeling “foggy” and out of sorts, so you only shine your light source on yourself.  You keep your depleting energy close at hand and do not include anyone else in your circle of light.  Eventually, that circle of light will get smaller and smaller until its hardly providing any energy source for you to face the world.  This is the moment when many want to curl up in a ball and tell the world to go away.

This is when you need to stretch your final energy source far and wide; to imagine that Soul Beacon, seated in the center of your body, stretching its fingers of light to illuminate others paths.  Because this is what happens when you do: that light shines on someone else in need; the receiver is then recharged from this positive exchange and shines their light back onto you.  You will feel your inner beacon growing in strength.  With each positive interaction, the foggy veil of sadness and fear will lift.  You will start to have energy to take that next step, and then another.  And the best part is, while you’re recharging your own energy source, you are also giving that gift to someone else!

Who are you going to illuminate today?

How can you reach out in order to replenish your own light source?

What choices can you make today from a place of compassion and faith whether than from fear and insecurity?

How can you shine your Soul Beacon from heart to heart?

Read the story I wrote of a young girl and an old sage in: It All Began With A Beacon of Hope (click link)

Please share your stories and experiences!

It All Began With a Beacon of Hope

girl with lantern

“I feel this little light inside me.”

“That is your Soul Beacon, my child.”

“A beacon?”

“Exactly.  You carry yours with great brightness.  It is how I found you.”

She sits with this thought for a while, twirling a blade of grass. Looking up shyly, she ventures, “I think I understand.  I can feel this glow inside of me, in the deepest pit of my spirit.  And when I think of this light, I can picture a lantern guiding my way through happy times and sad.  Is this like the light you call my Soul Beacon?”

“Why, yes.  Can you imagine why I think of it as something grand such as a beacon instead of a lantern?”

Well… a lantern usually just lights one person’s path while a beacon can be a light to many.”  She pauses to gather her thoughts.  “And my Soul Beacon, as you say, sometimes feels grand enough to light the entire world, but then other times, it feels weakened.  As if it may even go out.  But, when I use this tiniest bit of energy to reach out to another being, I feel it start to grow again, bringing with it an unknown warmth of serenity.”

“YES.  So wise, yet so young.  Your body belies your true spiritual age.  I shouldn’t be surprised; the spirit is with each of us to see and feel when we are ready.”

His gnarled hand cups the young girl’s with tenderness. “That warmth and glow you feel is your true Life Source.”

“I feel it.  I truly do.”

“I can tell, dear one.  Your Soul Beacon may flicker, but it will never go out.  Many become fearful when they sense the depletion of their Beacon.  Without stopping to reflect on what’s happening, they begin to hoard what little light they have left.  Greed and fear rule their every move.”

“But, that’s no way to live!  How very lonely.”

“Don’t fret; that’s the glory of our Soul Beacons.  You can use your special gift to spread the light to others in need.”

“Gift?”

“Yes.  For without realizing it, you are touching every being you meet.  You are spreading your gift from heart to heart.”

“How do I know if it’s working?”

“The proof is in the result.  Think of someone you’ve met who seemed down and defeated; their energy depleted; their hope lost.”

Looking off at the arriving sunset, she sees the face of the farmer in the blazing riot of reds in the Western sky.  “Yes, I remember now.  I’ve met a farmer who had lost his wife; all he wished was to lie down in his fields and give his life back to the Earth.”

“And do you remember what happened during your visit with this farmer?”

The girl retells the story of her chance encounter with the lonely man.  “As we were talking, I slowly experienced a change in his entire demeanor.  His body began to unfurl from the protectively curled stance I first found him in.  He started to lean in to me instead of away.  Shadows of a smile graced his lips.  And he thanked me for spending some time with him and reminding him of all the reasons he needs to stay here and continuing living, no matter how hard.”

“And, you, how did you feel?”

“Well, I couldn’t understand why he was thanking me.  I hadn’t done much; I just talked with him for a while. I felt like thanking him.  At that moment, I felt beaten down by my journey; I was bone tired and couldn’t see any end in sight.  And then I met the farmer, and my journey had purpose again.  I left with a spring in my step.”

“Young one, when we take our light and shine it on others, they are bathed in our Energy.  Through caring gestures and pure human interaction each of us has the ability to recharge our depleting light sources; our Soul Beacons.”

“So, that’s all it takes?  Just showing some compassion to another being will re-build their energy, recharge their Soul Beacons?”

She pauses and ponders on this.  It still seems so simple.  And then, she sees.  “Ah, it seems like actions we should all be taking naturally.  But, in today’s world, everybody’s heads are down, looking at their own small space.  But, if we look forward, into the eyes of another, we not only validate their existence, we are validating our own!  And, it’s when we feel the most vulnerable and weak, that we have to reach out.  Otherwise, we all are just walking shells of what we are truly meant to be!”

“Now, it’s your job to spread this message from one person to the next as you continue on your journey of life.  The brighter your Soul Beacon becomes, the more people will be attracted to you.  Use this not to gain power over others, but to spread your energy out like a spider web, each tendril touching and igniting a Soul Beacon lying dormant within another.”

“Shine on, young one, shine on.”

It’s Been One of Those Weeks!

Thistooshallpass

It’s been one of those weeks months years!!

I’m in a melancholy frame of mind.  Each day I awake expecting a different return on my daily investment.  And each day it has played out the same story: beginning with hopefulness, ending in defeat.  Yet, I keep getting up and trying again… One Day at a Time.

I can trace this defeatist attitude back to the beginning of last week; the unofficial end of summer, Labor Day.  It’s that time of year when fall ushers in a season of transition, rest and reflection.  My husband and I were struck by the lack of memories created this past summer.  We were overwhelmed by a year that had contained one “loss” after another.  No, it wasn’t a traumatic year (health wise); we’ve certainly have had our share of those.  But in its mundaneness, it almost felt worse.  We felt we truly had nothing to show for the past nine months of “just getting by.”

It’s been a year of “take-aways.”  It has felt like we have been punished, our privileges revoked, for actions we didn’t commit.   We’ve had to accept one “reality of life” after another, with no reprieve.  After five years (!) of a pending lawsuit against the medical providers that ignored my acute symptoms resulting in a ruptured colon, sepsis lasting two weeks, and culminating in the infamous words, “You have a 10% chance of making it through the surgery. You need to say goodbye to your husband,” we were told we had to drop the case.  That there was no doubt the evidence showed clear negligence on the doctor’s part (they even admitted to such in deposition!), but my multiple underlying conditions muddied the waters so much that a jury would be hard pressed to agree on a guilty verdict (and we would be out upwards of $200,000 for even trying).  Hence, Loss #1: no chance of financial security for you two!  Then, just mere months later, we were informed by my GYN that we should never, ever, ever attempt to get pregnant, because doing so would result in a 95% chance of death (for both myself and the fetus).  Major Loss #2: life-long hope, wish, most-certain dream, dashed.   And this cycle of loss has continued; punishments administered just by the sheer fact that I am sick.  They haven’t all been so big and life-altering, but the small punches knock you down over time just the same.

It’s also been a year of “give-aways.”  Unfortunately, not like the Prize Patrol kind, but the bill man’s at the door requesting you give-away all your money kind!  Every time we’ve accumulated a small nest egg to take a trip or do something “normal” (like go out to dinner), we’ve been hit by another unexpected financial necessity: the cat’s been sick, the van’s been sick, my feet are sick and need new soles, on and on!  Thankfully we’ve been able to cover these excessive, unexpected expenses, but it’s also left the cookie jar empty… not even a crumb for a desperate late night snack.   I’m feeling this so markedly in this time and space, because it is now, today, that we were supposed to be on our vacation to Cape Cod; our “healing respite” we called it.  Yet, one more thing we looked forward to for months that we had to forsake, just to get by in the living present.

And, that’s it… the only thing certain in my life is The Present: this very moment in front of me.  My husband bemoans that we should never plan anything, we just have to cancel it anyways.  And, to some extent, I agree.  It’s extremely discouraging to get your hopes up only to have them dashed down over and over again.  It’s one hell-ride of a roller coaster.  But, I can’t go through life without having dreams.  At the same time, it’s a stark reminder to live and enjoy each present moment, regardless of what you are looking forward to on the horizon.  Sometimes, we have our heads stuck so far up in the clouds, we forget to enjoy the amazing scenery beneath our feet.

I admit; I’ve been in a funk.  I know that we all have to make sacrifices, with the hope that the future will be brighter. But, and I guess this is where my P.T.S.D. comes in to play; I’ll get scared that there won’t be a “next time.”  I’ve lost so much time, so many years, to being on my death bed sick that I get fearful when time passes me by that could have been filled with larger than life living.   People will often say, “well, none of us know when our time will come; I could get hit by a car tomorrow!”  Yes, that’s true.  But, let’s face; most people don’t have a clock ticking down at rapid speed, like those of us with severe chronic illness.  We live with our mortality every day.

This “Debbie Downer attitude” has kept me from blogging recently.  Yet, it feels cathartically healing to write this all out on page and share it with you.  And it has helped to refocus my intentions.  I may not be communing with the seals of Cape Cod right now, but I am communing with all of you.  And I am grateful to be fully alive, and fully present in this very moment.

Staying Angry at My Chronic Illness: I’m the One Who Gets Burned

buddha-quotes-sayings-quote-deep-anger-wisdom Am I angry at my illness?  This was a question recently posed by a friend who remarked, “I know I would if I were you.”  And it’s given me pause.  I certainly have been angry at my illness in the past, or more accurately, at the doctors who ineptly handled my illness resulting in near-death effects.  Holding on to the resentment aimed at these negligent doctors gave me a false sense of power in a situation where I was entirely powerless.  If I could focus my energy on them; I wouldn’t have to face the reality of my physical unwell-being.

When I sit quietly with this question today, I stay deeply aware of all the emotional currents running beneath the surface.   And none of them resonate with anger; not any more.  Is that even possible?, I wonder.  Yet, it is.  Time heals; if you let it.  Somewhere during my medical journey, I realized the only one I was hurting by holding onto this red hot coal of anger was me.  I waited years to lob that coal at the ones I resented.  In the end I was left standing with the hot coal in my hand; the only one burned by this “righteous fury.”  I got tired of burning myself.  I finally had the insight to see that by holding onto this on-going anger, I thought I was giving myself back power.  But in truth, I was giving these doctors the power, by constantly bringing their negative energy into my life over and over again.

Anger and resentments are tricky things.  Many of us are afraid to let go of anger, because then it will signify that the other side has “won.”  That you are giving in.  But, it’s the exact opposite.  Just because you forgive, doesn’t mean you forget.  We often associate the word “forgive” with excusing someone for their behavior or mistake.  And this can be true.  But, in this circumstance, forgive falls under the alternate definition: “to stop being angry about or resenting somebody or somebody’s behavior” (Encarta Dictionary).  That’s all.  I decided to stop being angry; to put down the hot coal and start living my own life again.  I have not forgotten what the doctors did; I could never forget that.  But, by forgiving, this experience became an extremely unpleasant memory.  It taught me how not to act in the future.  In this case, I no longer implicitly trust doctors just because they have a medical degree on the wall.  If they are not responding to the needs of my body, I go elsewhere.  Because that’s the key, it is my body.  Therefore I am the only one truly qualified to know when something is awry with it.  In this case, by processing my anger into forgiveness, I’ve gained valuable tools in which to address my physical needs.  If I was putting all my energy and effort into hating these people, I would miss the experiences that are happening in the now.love-quotes-026

Holding onto to anger is living in the past.  I have already lost chunks of my life to illness, I am not about to sacrifice anymore by reliving the resentment I feel at my physical condition.  That’s not to say I don’t get frustrated with my body and its limitations (see yesterday’s post as a fine example of this!).  I just choose to fully embrace these feelings when they come, validate myself, share them with others, and then let them go.  For me, dwelling in a place of anger only creates a septic environment filled with fear.

So what is the opposite of living a life of anger?  It’s living a life of acceptance.  Again, acceptance doesn’t mean that I have to feel joyful about my situation, it just means that I have come to terms with life’s circumstances; it’s “the realization of a fact or truth and the process of coming to terms with it” (Encarta Dictionary).  The truth is I have a chronic illness; actually several chronic illness.  They are all autoimmune in nature; my body has decided that my organs, cells, blood vessels, bones, and connective tissues are the enemy and will attack them at no cost.  Those are the facts.  It is also my truth that my disease cannot “attack” my spirit unless I let it.  I choose to accept the facts of my situation and to live in what I know to be true.  Holding onto to anger at my body only creates another invasive disease.  It makes me stay stuck in the past, in the “what if’s” and “if onlys.”  If only my life had turned out differently.  Well, it didn’t.  So instead of constantly fuming over my situation and asking (wailing), “Why me?!,”  I’ve decided to bury my anger, plant a garden of acceptance, love and hope and face each day with “What’s next.”  These are my circumstances; it’s up to me what I do with them!

every min angry quote

The Gift of Illness: A Re-Invention of Self

"See simplicity in the complicated Achieve greatness in little things." {Lao-Tzu}

“See simplicity in the complicated
Achieve greatness in little things.”
{Lao-Tzu}

There are two ways I can look at my illness: 1. “It was the end of my world” or 2. “It was the start of a Brave New World.”  Today, I choose option #2.  The option of Hope, hope for a new world, a new beginning.  I am in no way trying to profess that this was an easy choice!  I lived with both perspectives and took time before making a final decision.  I don’t think I would be in the place of peace I am today if I hadn’t lived with both the Paths of Despair and of Hope.My hope lies in the recognition of an opportunity to reinvent my life. 

I can actually have gratitude for my chronic illness today (imagine that!).  Because when I look objectively at my life “in the now,” I have been afforded opportunities to discover and develop parts of myself I didn’t even know existed before.  In saying “before,” I mean the time before my autoimmune disease (Polychondritis, Fibromyalgia, Migraine, Chron’s) stopped me from working, and let’s be honest, engaging in most of my previous activities.  In this “T.B.,” I was a Type-A, “go, go, go girl!” I was (egotistically) proud of my ability to multitask and juggle all parts of my life, during all parts of my day.  No breaks! Believing all that “idle hands make idle minds” crap. I mean, really, what was I constantly rushing around for?  Sure I received accolades and “atta girls” from all facets of my life.  But, in the end they were just words; words with no real meaning because they didn’t originate from within me.

Lately I’ve begun to look at this change in my life differently…

I’ve started to celebrate the fact that I was given the gift of reinventing myself!  I look around and see most people on the same path for 40+ years of their adulthood.  And many are content with their journey. But few, too, are afforded the luxury of stepping off the established path and taking side-trails until they re-discover a new route that fits for the next phase of their life.  Luxury?  How can I call chronic-illness a luxury?!  Well, for as much as it has taken away from me (which is plenty!) it has returned, just in different forms than I was used to.  It would be (and has been) easy for me to overlook these new “gifts” ahead of me because I am spending my time looking back at all the things that have been stolen from my life, on a constant hunt to retrieve that which has been lost.  It’s not atypical to be stuck on what once was and is now gone; because trusting in an unknown future is a far scarier prospect.  But this approach only caused me constant emotional pain, regret, sadness, and emptiness.

Then, one day, I decided to look forward. I picked up one of these “new gifts” lying in my (new) path and opened it.  Inside I discovered an opportunity to awaken my inner artist.  It came in the form of a night nurse who suggested I begin beading to pass the time during my lengthy hospital stays.  I was quickly hooked, finding this quiet, meditative activity deeply soothing to my mind and pain fluctuations.  In a short time, I was selling my creations out of my “hospital room storefront” (no joke!) to all the staff.  This first step on this Road to Artist boosted my confidence and helped me to feel productive again.  The best gift was the positive energy I gained and shared with the influx of visitors coming in and out of my room, nurturing my own Soul Beacon of Hope.

After veering off what I thought was going to be “My Path for Life,” which I blamed my illness for taking from me, I realized the first step was the hardest.  I’ve taken many breaks along this new way, some chosen by me and some chosen for me by my ailing body.  But when I reflect on the anguish I first felt at “losing” all the things I thought made me “me” and then I fast forward 7 years to today, I discover that I am now an artist, a writer, a truly present friend and wife, a seeker of peace, a role-model of hope and acceptance, and a Survivor!  I started to look at all things I’ve gained.  No, none of those things would be placed on a resume.  But for me they are far greater accomplishments than all of my professional and schooling achievements.  They are my re-invention of self!

Just the other day, in the midst of painting, my husband commented, “You know, in a strange way, you getting sick was a blessing.  You would never have become the artist you are today if you had continued to be so consumed with work.”  And he’s right!  It used to be hard for me to recognize that a blessing of this magnitude could arise from such severe, sudden illness.  Oh, I’ve always had a hopeful heart and been able to recognize small, daily gifts of gratitude, from a helpful friend to a stunning sunset.  But, again, this was gratitude for all the things outside of me.  To have gratitude for what’s within me?. . . now that’s a truly miraculous discovery!

I was able to pursue a solid career in early childhood education for 15 years.  Now, I am on Re-Invention Phase Two: becoming both a Creative Person and a Beacon of Hope for others. Herein lays the miracle: I can reinvent myself again at any time! It may be self-directed or Universe-directed, but either way, I am staying open to the change. And am embracing the NOW… where I can truly find gratitude in being sick!