AND THAT LAUGHTER BIT........

So, there's this pain thing.  You know the one that consumes you and makes you feel so sick to your stomach that you long for the days of "morning" sickness (ahem....all day sickness).  Yeah, that.  The kind of unrelenting pain that you're just trying to focus on how to breathe never mind how you're going to get dinner or pick up the kids from school or buy that birthday gift for the party this weekend.  That's the pain that I'm talkin' about.  So, here's the thing.  Please don't stop reading my blog but.... you need to laugh.  We all do. 

Feel free to yell obscenities at the screen now.  Tell me off.  That's okay.  But hear me out.  I never said that laughing was going to remove the pain.  A few minutes of laughter is not going to change your diagnosis.  Laughing every day is not going to make me able to take dance class again or jeez, even vacuum.  Oooh.........imagine that!  Vacuuming is making the same sentence as taking dance class.  Watch out everyone!  Maureen is getting wild!!!

What I AM saying is that we DESERVE a break.  I deserve a small piece of joy each day.  Anyone living with chronic pain is worthy of happiness. Where can we find that sweet spot of intense euphoria?  Laughter, my friends.  There is a reason for that old adage, "Laughter is the Best Medicine".  Now, don't get me wrong.  I think we need to do a lot more than laugh.  But, if times are tough and life is dark, as it has been lately for me, please do yourself the kindness of enjoying a good belly laugh.  

Anyone who knows me is well aware of my love of a good joke.  I have a loud, hearty guffaw that has certainly caused hearing damage to my sweet husband.  However, I have been told I am a fantastic audience member at the theatre by my actor friends.  I am at peace with my laugh.  It is a big part of who I am.  It is vibrant, happy and yes, loud.  

The saddest thing to me was when I noticed recently how little I had been laughing.  I remember when Nicholas, my 14 year old, was small he was asked in kindergarten to write about his family.  He wrote, "Daddy works at TV.  Mommy plays and laughs"  I always thought that was the highest of compliments.  However, I began to worry a lot that my second son would have a very different description of his mom.

So, I began to seek out laughter. I started with DVR-ing The Ellen Show every day last year.  I'd be in horrible pain and within minutes of watching, the house would be filled with screams and snorts of laughter.  When the boys were at school, I would go to YouTube and watch Jimmy Fallon skits from his late night show.  My husband introduced me to a crazy, funny sketch called "Between Two Ferns" online.  I binge watched that one day while bedridden and cried.  This time, the tears were not from pain.  They were from hysterical comedy that took my breath away.

What a gift.  Laughter is a gift.  It is free and it is accessible to us all.  

Please use it. Comedic books, Lucille Ball, Jerry Seinfeld, The Three Stooges, NPR's "Wait, Wait Don't Tell Me" or whatever it is that cracks you up.  It doesn't matter.  Just find it and spend 10 minutes a day listening, reading or watching it.  

I know it seems like a small thing and I admit that it is.  However, laughter keeps us in the light.  Even if it is for ten minutes a day.  And, my friends, without that light we will get swallowed by the darkness.  

So, fight to stay in the light.  Fight with the 1% of energy you have in you and find the laughter. If you listen hard enough, you will probably hear me. If you get a migraine, you may live too close to my home.  :)

The Ugly Truth

This is an angry and sad post.  I'm not feeling uplifting or particularly positive so if you are uncomfortable with a potentially harsh look at chronic pain and the realities therein, I suggest you skip this post.  

People who know me well and who are close to me usually describe me as compassionate, caring and a good listener.  I try to be positive and though I get very down at times about my illnesses and pain, I continue to read, research and look at new possibilities for treatment.

After 19 years of pain and illness, I feel like I have a right to have a meltdown and I'm having one.  A gigantic, ugly, messy, angry meltdown.  I'm furious and want to punch a wall.  If only I could raise my arm without shooting pain.  And do you know how enraging that is to want, no to NEED, to punch something but to be unable to because it hurts too much?

If you do, then likely you, also, have suffered from chronic intense pain.  I'm very sorry that you know this feeling. 

Today I hate the world.  I am so angry that I can feel the red fire inside me and I can see red.  I haven't slept well in weeks due to pain and frankly, I'm sick of thinking positively, "Giving it to God", "being the change" and any other little tidbit of wisdom out there that I myself have already chanted into my brain.  Please don't start with me.  I've had it.

I walk around in unrelenting pain day in and day out.  I smile and laugh. I bring my kids to school and pick them up.  I ask about their days and encourage them and praise them about their work.  I get snacks and drinks and stay on top of homework. Laundry gets done and hugs are given. I email teachers and rally family and friends to purchase things for the latest fundraisers.  I organize music lessons and bring my younger one to Cub Scouts.  I get gas in the car, fold laundry and play outside with my kids. At night, I fall apart and fall into bed praying for sleep and relief. 

I have mums that have not been planted because when I did plant one, it sent me into the worst kind of pain spell that took me days to recover from. During which time, I still had to maintain my normal schedule. One weekend recently, I got really wild and cleaned our tiny upstairs bathroom AND did laundry.  That set me up for several days of muscle spasms and pain that left me in tears. My husband knew and my kids knew to an extent.  I shared with my online support group.  Otherwise, I continued to smile and wave.  Smile and wave.

Look, I don't rant and wail on Facebook about how much my life sucks and how hard it is to be in pain.  I post things about Fibromyalgia Awareness and Chronic Pain Awareness from time to time and I write this blog.  I haven't even written here in over a month because this past month has been horrible. I felt that I shouldn't write until things started to look up.  Until I realized that things may not look up for a while.  This is my life.  This is reality.  It may also be other people's reality. So, I'm writing.

Today, as the alarm went off tears streamed down my face. I had been kept up most of the night by pain.  The medicine that works for me in these intense situations, I get in limited quantities.  Therefore, I could not take anything all night.  I tried visualization, said my rosary three times, and used my heat pack and applied Tiger Balm cream.  It was the longest night and the shortest night all at the same time.  Getting out of bed was excruciating as my hips, knees and legs were taut bands of muscles bound together and on fire.  I took a deep breath and slid them to the side of the bed.  That's when my lower back decided to join in the fun and begin to spasm.  I gasped in pain.  I woke my 7 year old for school and half walked, half crawled down the stairs.  

My husband was already in action working on getting our older son ready.  My husband is a team player.  Actually, he's more like a solo act most of the time.  He does far more than he should and this was never in his contract.  It makes me deeply sad and I realize how fortunate I am.  Guilt has made a comfortable home in my heart like unwelcome vines of bittersweet twisting and wrapping around it making it difficult to feel much else.  

I put my sneakers on so that I can have a bit of support.  This elicits looks of confusion from both boys who ask where I am going.  I just tell them my legs hurt and feel better if I'm wearing my sneakers. They seem to accept this until my younger son excitedly asks if we can walk to school.  I tell him if he gets ready in time, immediately cursing myself knowing that this will be an impossibility for me.  But, why shouldn't my seven year old be allowed to walk to school with his mother?  Damn it!!!! I'm so tired of saying no to everything!

My husband leaves with our oldest son whom I wish a good day and an 'I love you'.  I receive a grunt, but he's 14 so, hey.  Fortunately for me, my little guy has some time management to learn so we drive. We chat happily in the car and I send him off with a big smile and an "I love you".  I wave and as I drive out of the parking lot I burst into tears.  I need to make a stop at the store for a couple of things.  I get there and sit in the parking lot with sunglasses on trying to pull it together.  The seat warmer is on and it soothes my spasms in my back and sitting feels good on my legs.  It is 8:10 a.m.   I have another 13 hours of my day to go.  

I force myself out of the car and walk slowly into the store.  I keep my sunglasses on because I can't handle fluorescent lighting and this is no day for a migraine.  I pick up the two things I need and head to the register. Thank God there is no line.  I get back in the car and turn the seat heater on and sit for another 10 minutes before I can bear to drive the less than five minutes home.  

However, this is the day that I am calling the pain clinic that I have promised my husband I would try.  I have not tried a new doctor since the last fiasco in January.  Yet, with my Myofascial Pain getting more intense and the change of season I have made a promise to my family that I would try, yet again.  This is a place where my husband has done some freelance video work and was impressed by the patient testimonials.  He has been after me for over a year and a half to go.  I have finally agreed.  

I get home, and make the call. This is huge for me, you see, because in 19 years I have found two, yes two, doctors who have been knowledgeable and compassionate about Fibromyalgia.  I have seen many more than that.  I have been to Boston twice.  I have been to a reputable hospital here in NH that is the "best" only to be treated like the dirt on this man's shoes.  I have been to approximately twelve different places and each time come away in tears, disgust and/or with a complaint form in my hand.  So, you see making this call was a big deal.  I called the number of the clinic with, much to my dismay, hope in my heart.  According to the website, what makes this medical facility stand out is the compassion and individual care from the moment a person walks in the door.  So, I call and guess what?  I get a recording.  If I am a new patient I need to press 2 and leave my information including my insurance information.  I hang up.  I'm not in the mood to be treated like a number today.  Just to be clear, I check the website to see what their hours are but they are listed nowhere.  I call back to see if I can find them on their voicemail menu but alas, I cannot.  

I'm nauseous from the pain, there is laundry to be folded, dishes to be done, errands to be run, dinner to be prepared, a chiropractor appointment to be made, and dead mums outside that I never finished planting.  All around me screams failure.   I crawl up the stairs and fall into a heap in bed and sob.   

I give the hell up.  Yes.  That is right.  Today I friggin give up and you know what?  I am allowed that.  I have a right to say that and until you have lived in my shoes day after day, don't you dare  judge me.  Today is my day and today I am not looking on the bright side, trying something new, meditating or anything.  Today I am sad, angry, grieving, exhausted beyond belief, my pain is a ten and it's only ten o'clock in the damn morning.  

I want to scream, cry and throw things.  I want to feel peaceful and happy again.  I want to be able to go outside and plant my mums.  I would like to just do the dishes and make dinner AND take a shower without feeling like I've run a marathon and need pain medication and a three hour nap.  

Self pity is an ugly thing.  It is not something I am proud of nor do I like to dwell here.  But, isn't it also important to be honest?  Isn't it crucial to know what really goes on behind the faces of people living in chronic daily pain?  I know it is uncomfortable to look at.  Believe me, I feel pretty darn awkward writing this.  However, I feel like I owe it to myself and to everyone else who struggles to maintain a "normal" life while living with Fibromyalgia, Chronic Myofascial Pain, Chronic Migraines and any other type of chronic pain disorder to tell the truth.  

The truth is that we have really bad days.  Even those of us with the best husbands, beautiful kids, faith and positive outlooks.  Bad days and bad weeks happen.  We want relief. We want to be understood. We need compassion.  We want doctors to stop looking at us like we are crazy or drug addicts.  

In the midst of trying to be courageous, sometimes we need to fall apart, too.  

Peace in the Midst of Pain

Peace in the Midst of Pain

For many years I have read articles, blogs, and books about the phenomenon of people suffering from terrible pain who were able to separate from their pain and find inner peace despite their afflictions.  I read of meditation, and even tried it.  Sadly, my ADD mind never seemed to cooperate.  Typically, this is how it would go: "I am still.  I am peaceful.  My pain is here but I am at peace.  I am, oh man I HAVE to remember to make that dentist appointment for the kids.  Oh!  And, I have GOT to remember to pay that parking ticket.  Why can I never get anything done?!  Oh no! My breathing!  Okay, start over.  Deep breath in, and out.  Damn, how did I miss that gigantic cobweb over there?  I wonder how long THAT has been there? Okay, seriously?  This is not working.  I feel more stressed than before and I have things to do! " 

In 2005, a friend of mine died of cancer.  I've lost a few really special loved ones to cancer now and each time it has been, well, awful.  Cindy, in particular, taught me a lot about being sick.  I watched her and she was real.  She cried, she motored through, she lived, she got angry, she continued trying.  In the midst of it all, her faith got stronger.  Cindy was the first person who taught me how suffering can be a gift.

I knew her cancer was spreading and when she first spoke of how suffering could be a gift, my assumption was that the disease was affecting her mental capacity.  I listened to her, nonetheless, and over time found myself drawn to her words.  In suffering and pain, she would say, we can find an inner peace and calm that is unavailable to us when we are well.  We also have more time to think of others.  We can pray more, and give more of our time to others.  True, we may not be able to cook, clean; shop but we can give the gift of time. 

How often do we Fibro Warriors get our self worth entangled in what we do for a career, how much we have "done" around the house, how organized our kids' rooms are, how many home cooked meals we have prepared each week, and how we should look? 

What happens when we fatigued, pain filled and teary eyed women, instead, stop for a few moments and look inside ourselves and listen to what is going on in there?  It is hard to do. I know!   We are living in a modern society that is not very encouraging of women to slow down.  Just Be.  We are the multi-taskers, the super moms, the "pretend it is all great with a smile on our faces and collapse behind closed doors sobbing women". We are supposed to be the independent women who say, "Oh, no. I'm fine. I've got this".  But, really, do we?   Of course not!  Certainly not every day.   Even women who do not have chronic illness and pain, need support and help. 

So, when we sit down and put our feet up or are lying on the couch or in bed, we have a choice.  We can take a few minutes to turn off the TV, unplug, and just breathe and close our eyes and listen.  If you are like me, you will have a bunch of random thoughts fly through your head similar to the ones from the earlier paragraph.  Smile and notice those thoughts and instead of criticizing yourself, you can smile at that part of you but continue to breathe.  Imagine what your insides look like or what texture they feel like.  Are they rough and red?  Angry?  Empty?  Do you feel knotted up in your stomach?  Do you feel just nothing? 

There is no right or wrong answer.  Just take the time to be aware of them.  Then notice your pain.  Where is it?  Sometimes when I do this, it is easier to find where my pain is not.  Well, let's see....my ear lobes don't hurt.  My pinky toe is feeling just ducky today.  Keep taking deep breaths.  This is not magic or rocket science.  This is not a cure or a way to make pain disappear. 

I am going to take a quick break here to say that in the past, these kinds of articles annoyed me.  Actually, that is an understatement.  They made me very angry.  When someone would suggest an exercise such as the one I am suggesting above, it felt condescending and seemed to diminish the pain and fatigue I experience daily.  I would equate it to someone telling me that the pain of childbirth is not really pain but a beautiful "sensation".  Um, yeah.  So, please stay with me.  I am on your side. 

However, I have had a recent breakthrough in therapy and I am learning how to separate my physical pain from my emotional being.  For example, I can be in a high amount of pain.  I close my eyes and I can feel my pain throbbing in my shoulders, neck, hips, knees, elbows, you name it. 

While I am still, I swear I can feel the vibrations of the pain ripple through my body.  It feels swollen, red and angry.  I am very aware of the pain.  I then look inwards and see what I see and feel there.  Where in the past I have had a constant large knotted ball in my stomach, I instead feel space.  I see light and openness.  I feel peace and calm.  For the first time, in probably the 17 years since my diagnosis, I feel no anxiety or depression.  What????  How is this possible?  How can I be in terrible pain but at the same time feel peaceful and calm?

My therapist specializes in working with people with chronic pain which is why I sought him out.  He has been trained in Somatic Experiencing & Somatic Psychology which is pretty fascinating stuff.  Not that I cared a speck about it when I first went to him.  I was in a depression so deep, I couldn't read a short fiction book for fun, never mind read about Somatic Experiencing and understand what I was reading.

In any case, after all of these years of reading about people with chronic pain, watching my friend cope with the pain of cancer, and not being able to wrap my head around how one can be in agony and still find inner peace, I think I am beginning to get it.

It is possible.  Just knowing we have another option as chronic pain sufferers is freeing!  So often we feel trapped, stuck in a corner, misunderstood. 

I am not saying this is THE answer to all of our issues.  However, it may very well be a valuable piece to the intricate enigma that accompanies our daily lives.  Obviously, we need to continue to trudge on as advocates for ourselves with the medical world, and strive for optimum self care.  Clearly, neither of these ideas is new to any of us.

The next time your body is screaming in agony and you feel like you are drowning in a sea of fatigue, just as you feel yourself falling prey to the shadows of anxiety or depression remember this.  Even if it is for a short period of time, you are worthy of happiness and a break from the darkness. 

Then maybe, just maybe, you can take ten minutes to sit and close your eyes and listen to what is going on in your body.  No judgments.  Just listen.  Observe and acknowledge it.  Look for any open space inside.  Envision light anywhere in your body, even if it is in the tiniest area. Imagine yourself at a time in your life when you felt giddy or in a place that made you feel safe and focus on that memory.  With a little bit of time, that miniscule area of light in your body will expand.  Keep a journal, if writing helps you.  Watch how your body stays the same and how it changes.  Most of all, remember; everyone deserves joy and peace.   They are attainable even in the midst of pain.

You may surprise yourself.  After all, you have made it this far.  You clearly are a warrior.

Courage Happens

Red is not really my color.  It doesn't look good with my skin or my eyes.  It's a great color, just not on me.  At least that is what I have always thought.  But, lately I've been trying on my red a lot more.  Not really wearing it, necessarily, although I do have some rockin' red flats that I love.  What I mean is that I have adopted a new mantra, if you will.  Instead of approaching my life from a place of fear, I have decided to switch the fear with courage.  Sounds simple enough, no?  No.  Not really, anyway.  It has taken me a lot of hard work, determination and, well, courage, to shift my thinking. 

Now, I realize that what takes courage for me is very different from what it may mean to others.  Here is an example of what it's like from my eyes.  I wake up in the morning feeling like I could easily sleep another three hours, head aching, allergies raging, pain and fatigue assaulting my body and I yell, "NO!", in my head.  I want to hide under the covers and pretend that I did not hear that alarm or my husbands' gentle but persistent voice to wake up.  I immediately tell myself, "I can't do this".  This is pretty much how I feel every day.  HOWEVER, for the past month or so I have been challenged by my ever so amazing Integrated Awareness Practitioner to replace the fear behind those statements with a calm sense of courage.  So, now when I say "I can't do it!", I correct myself and  say, "Yes, I can.  I did it yesterday and the day before and I can do it again today". 

What is "it" you may ask?  Well, getting out of bed for one thing.  Then there is showering, eating breakfast, taking my meds and supplements, getting my little one up and fed and clothed for school.  Making his lunch.  Driving him to school.  Taking my walk and then picking both of my kiddos from their schools, the occasional play date, bringing them to karate, making dinner, playing with them, helping with homework, and if I can muster up the strength; bedtime routines.   Overwhelmed?  I was. 

It amazes me that moms without chronic pain and illness do all of the above and much more in a day.  I do not clean my house during the week.  I do laundry and try to keep up with the dishes and trash. On good days, I make dinner. May not sound like much to some, but that's what I do.  My husband does the vacuuming, and pretty much picks up the rest of the pieces that complete the puzzle of our life together. 

At first, I was really jazzed about this new idea of replacing the word and feeling of fear with courage. It was exhilarating and empowering.  My revised mantra seemed easy enough. Until the day when it rained for the fifth day in a row, insomnia had been taking over my nights and the bags under my eyes could hold $250 worth of clothes from Kohl's.  That morning I said, "The hell with this.  I CAN'T do this.  I don't WANT to do this.  I give u........", and then a voice, a very small voice, in my soul, said "Yes, you can".  I decided to begin with the Serenity Prayer.  Then I slowly slid to the edge of my bed and took an enormous breath and got up.  Nothing magical here.  It was not fun. It was not invigorating.  I still looked like death warmed over.  But, I got up.  I went downstairs.  I began my day.  I did not make dinner that night.  I could not exercise.  My courage that day was getting out of bed.  Washing my face, brushing my teeth and getting dressed took courage.  Every step I took felt like I was sloughing through molasses.  It was a very hard day but I smiled for my kids and hugged my husband when he got home from work.  When the day finally ended I even smiled at myself.  I wore my red that day.  My red badge of courage.  Going to bed that night, I thought, "That wasn't too, too bad". 

I am proud to say that I am getting used to this power color.  I'm diggin' it a lot more these days,  That right there is progress, my friends. 

Traumas and Fibromaylgia; a personal account

I am often asked to share my "story" with others whom I meet who also have Fibromyalgia or Chronic Fatigue Syndrome.  I am happy to do this, as I have found great comfort, solidarity, and compassion when others offer to share their story with me.  My blog tends to be more situational, and philosophically based.  However, I would like to try to introduce how my world was turned upside down by these illnesses, so as to be able to understand why I am where I am at this time.

I first began symptoms when I was 24 and living in VT with my boyfriend (ultimately my husband).  I was working 2 jobs, taking dance classes, and performing in theater.  I was aware of the importance of exercise and eating "right" in terms of keeping thin but not so much in terms of living a healthy lifestyle.  I was young and like most at that age, felt invincible. 

However, I did notice that I needed a lot more sleep than most, especially towards the winter and spring of 1994.  My primary job was extremely stressful and I worked under a boss who seemed impossible to please.  I was walking on eggshells and had not matured enough to speak up for myself and set boundaries.  Oh, no.  That came much later.  So, I was often pretty miserable at work but forced a smile on my face and worked my butt off to try to please those I was working for.  Not an easy task.

My second job, was working part time at a mall in customer service.  I loved this job.  I loved interacting with people and the more relaxed atmosphere that it provided.  I made good friends with a couple of stand up guys who worked the security there.  I was certainly tired working so much, but most everyone I knew at that time was working 2 jobs, so it didn't seem to be out of the norm.

One horrific night, 2 days before Christmas, I was working at the mall.  I was happy because I was looking forward to going home to NH to celebrate Christmas with my family and have some time off.  My boyfriend, Todd, had left that day to go home to see his family and we would meet up later in the week.  I went to work with homemade fudge for my friends the security guards and was full of Christmas cheer.   I was buying dinner for the 3 of us (I should mention that I worked alone in my shifts) to be delivered much to their surprise and appreciation.  They came by and we joked and chatted it up before they had to go do their rounds throughout the rest of the mall. 

Customer Service at that time was in a room.  There were glass doors leading into the room, and a large counter behind which I worked.  The doors leading into Customer Service were also the only doors leading out of Customer Service.  Behind me were floor to ceiling glass windows. 

My job entailed wrapping gifts for people, assisting them in finding their way into the mall, suggesting stores for certain items, and at this time of year, selling First Night Buttons.  The First Night Buttons were selling like mad and everyone coming in was exhausted, cheerful and excited about the upcoming holidays.

After my buddies left to go do their rounds, a young guy came in and inquired about the first night buttons.  He wanted to know if I had been selling a lot of them.  I smiled and told him yes, I had and would he like to purchase one. 

Whenever I go into my brain to remember this, it all is all in slow motion terror.  He took out a gun and began to threaten me and curse me.  He wanted all the money and he wanted it now.  He kept snarling at me to not look at him and if I did look at him he would kill me.  He said that a lot.  I got a good look at him, all the same, which seems miraculous to me now.  I gave him the money and he ordered me to get down on the floor all the while aiming his gun at me. 

The next thing I remember was reaching for the walkie talkie (my only means to alert my security guards).  Then I remember them coming in and calling for me and ultimately finding me on the floor in a fetal position and the sounds coming from my throat sounded distant and scary. 

Needless to say those security guards (their names have sadly escaped me after all this time) felt horrible and looked like they, too, were going to cry.  One of them gave me his coat to put on, as I guess I was shivering.  

At some point, the police arrived and just when I thought it couldn't get worse, it did.  They had a lead from an informant at the mall that this guy was at a local club.  I was brought to the police station and had to change my clothes, put on a baseball hat, leather jacket and go undercover into this club and point out the guy who had done this to me.

I couldn't do it.  I mean, I went.  I actually went into this club with another female officer, but the light show and the music and everything made my already nauseous stomach lurch even more.  There were so many guys.  My mind was spinning and ultimately, I could not make the guy. 

After that, I was unable to go to my apt and sleep alone.  I mean, this guy knew what I looked like.  He even knew my name.  I was terrified, paranoid and unable to barely make a sentence.  I was brought to a friends' house and spent the night there where I kept the light on the whole time and read all night. 



I know this is one of the many traumas that has welcomed Fibromyalgia into my body.  Others include car accidents, and still others I am not ready to write about. 

One trauma at a time, they all built up walls inside of me until a house was  made for my Fibromyalgia to live in. 

And one at a time, I am breaking those walls down.  One trauma at a time.  One wall at a time.

The pain is real.  The symptoms exist.  But, so do my determination and my belief in a better life. 

There's got to be a way out.  I will keep bashing those walls down until someday I will find a window.  That window will be my way out.

Someday.

thoughts for the new year............

Thoughts for a new year..............This year I want to have more fun, more laughs and more time with my husband.  I want to be more patient and less critical.  I want to take a Zumba class outside the confines of my living room!  I will audition more.  I will be more courageous.  I will ski with my boys, build snowmen, and be in the moment with them.  I will muddle through flare ups and...remember that I am still me even when I am sick.  I will look for the worth in others, as well as in myself.  I want to paint, dance, act, write and strive to be the mother I was meant to be.  I will be my own best friend and consequently will have more to give to others.  I will pray more and worry less.  I will keep on walking, stumbling, crawling even when I feel I have lost my way.  I will be cheerful.  I will remember that we are all just human beings doing our best in this world.  I will know that I am enough. 

 

The Honest Truth

This has to be one of the worst flares I've had.  Maybe not.  My memory doesn't seem to be cooperating with me very well lately.  I haven't written in a long time due to the pain and fatigue.  You know what?  That's not even the real reason.  Truthfully, I have been afraid to write.  I'm very aware that everything I write is read by people.  This can be a detriment to honesty.  Then again, how much honesty are people ready for?  How much am I ready to admit?  I like to consider myself a patient, optimistic, determined person.  Here's the thing, though.  Lately, I don't feel like any of these things.  I am trying.  But, sometimes I don't feel like trying.  I feel like all I can do is survive the day.  And surviving a day or two is one thing.  But when you begin to string days to weeks and weeks to months of surviving, life becomes just that; survival. 

I am fed up.  Anger has erupted in me like never before in these past several weeks.  Sadness has overcome me in a very deep way.  For a person who has often had trouble crying, tears have been drowning me.  I feel alone, lost and (here comes the truth none of us want to hear) shrouded in hopelessness.  My children need me.  My husband is working in overdrive.  My house is a mess.  Christmas is fast approaching.  Everything is spiraling out of control and I'm in too much pain and too exhausted to so anything about it.  I want to make cookies, decorate and play with my children.  I want to make my husband a nice meal for his birthday.  I want to dust and do laundry like a normal person.  Forgive me, but I do not think I am asking for too much.  I just want more of a life than existing until bedtime when I crumble into the sheets and hope and pray for relief. 

Of course I am grateful for a home, my healthy happy children, a wonderful husband and that I do not have a fatal illness.  But, does that mean that I also am not allowed to want more?  We Fibromyalgia folks are too often criticized for complaining, malingering, exaggerating, and being attention seekers. 

The hell with it.  I am complaining.  I am angry and sad and feeling desperate.  I'm exhausted.  Like I have the flu 24/7 exhausted.  Like walking to the kitchen and back and shaking from over exertion exhausted.  I hurt.  Pain like knives are being stabbed into my neck and back.  The kind of pain that literally takes my breath away and leaves me nauseous. 

This is what I wake up to and deal with day in and out. I pray for sleep to give me respite.  This is the only escape I have.  Some nights are not as kind as others. 

So there.  I threw up all over the page and onto you, my readers.  I'm sorry.  I'm sorry this is not an entry with some kind of positive message.  I'm sorry I cannot be a role model today.  I'm sorry I cannot inspire anyone. 

Today I just can't.  I'm just trying to get through the day.  Again.  Trying to muster up a little speck of hope for tomorrow. 

This is real.  My illness is real.  My pain is real.  This entry is real. 

Honest and true.

Right Here, Right Now

Just for today....................


I am me.  I am just right the way that I am. 

I am enough.

I will love myself and take pride in all of my hard work.

Today will not be a day of self-abuse.  Today will be a day of self-love.

Today I will smile, laugh and feel peace. 

I will dismiss negativity and rejoice in all that is pure and life giving.

People who carry hurtful or unkind words or actions towards me will be dismissed with a simple, "Bless and Release".

I will breathe deeply.

I will choose nutritious foods to feed my body.

I will know my limits and respect them.

I will make time to do something creative.

I will do simple chores and be satisfied with my work.

I will not exhaust myself or risk injuring myself by doing too much.

I will love myself by choosing all of the behaviors listed above.

I am enough.

I am in the moment.

Right here, right now.

Who has your back?

Okay, so today marks our first snow storm here in New England!  And, no, we aren't talking about a few flurries.  Actually, we are talking more along the lines of 6-10 inches.  I must admit, I'm excited.  I love the newness of each season.  Remember the first day in the late spring when we can wear sundresses or tank tops and the kids can drag out shorts?  It's a night that will most definitely end with ice cream and playing outside for too long.  I feel the same way about the first snow.  Granted, it would have been nice to get through Halloween first, but hey. This is me trying to live in the moment.  So, at this moment I am warm and safe and it's pretty outside!  I'm working hard on staying in the moment lately. It isn't that I'm really evolved or anything.  I wish I was.  Truth is, I just get overwhelmed by every little detail of my life.  So, I literally focus on the task at hand.  Right now I'm focusing on my thoughts and the sound of my fingers on the keyboard.   Who feels completely and totally overwhelmed, overextended, exhausted and incompetent???  Yeah.  Take a number, sista.  We have to come together and have each others' backs.  But, that cannot happen if we aren't willing to foremost have our own backs.  This is one of those big life lessons that I was sent to earth to learn because this comes up in my life constantly and has for many, many years.  So, here is what I did to respect myself and get my back today.  I said no.  I chose to work all day on my sons' Halloween costume because I wanted to and he still thinks it's cool if I do a good job.  Today was the only day I had to do it.  Therefore, I am exhausted, sore in pain and in no shape to attend the annual family Halloween party.  I excused myself and here's the kicker.  No guilt!!!!  I can honestly say with the purest of hearts that I do not have an eensy bit of guilt.  I knew if I went, I would be overdoing it (pretty sure I already have anyway) and would be only going for the benefit of others adults' needs and expectations.  So, my fantastic husband brought the boys over and I am here blogging, soon to be snoozing.  So, how many spoons (please see the spoon theory on butyoudontlooksick.com)  do I get for that?  Let's see...........setting boundaries to take care of myself AND embracing change (i.e.snow).  Oh, I think I deserve at least 5 for that.  I'm going to need them.  I will try to store as many up for the upcoming months as possible.  

Before I sign off, I am leaving a link to a great video and song regarding Fibro awareness.  I hope you can learn from it and be able to love yourself a little more after seeing it. 

Gentle hugs to all.

http://youtu.be/jD81VKBkxHc

One is the the loneliest number

Remember that song?  Why is it that with a house full of people, I feel so alone?  Oh, I know.  I have a flare up.  Today when I walked through the living room I actually saw red when I witnessed a family riding by on bikes.  The rage in me was palpable.  Yes, people I am livid that there was a nice family riding by my house on bicycles.  I'm that maniacal.  Listen, I'm not an angry kind of girl.  I let people go in front of me in traffic, I stop at all crosswalks and wave to people with a smile.  I can honestly say that for the most part, I treat others the way I want to be treated.  So, why the sudden urge to scream out my window at those innocent passersby today?   I'm furious.  I'm hurting physically, yes.  But, I am even lonelier and more sad than I have felt in a while.  I want to be apple picking today.  I want to rake leaves.  I want extra hugs and a picture drawn for me by my four year old.  How does one ask for what she needs when her needs are always so great?  It's like asking the person who stopped on the highway to help you change your tire and let you use their cell phone to give you five hundred bucks, too.  Okay, not the best analogy.  I'm trying here.  It's hard to write about this stuff.  I hate feeling needy and dependent.  There is no way in hell I am asking my husband to help me take a shower, for example.  I need one and want one but I will wait, thank you very much, until I can do it myself.  I am not 98 years old.  He did not sign up for that and frankly, neither did I.  I have been told that in order for feelings to not get "stuck" inside of me, that I need to move and walk or dance or whatever I can do to keep my body moving.  What do I do when typing, reading and walking to the bathroom zap every ounce of what little energy I have left?

What's a girl to do?  Well, she feels her feelings.  She writes.  She gets through the day.  Every stinking minute of it. 

She closes the pages to this rotten day and says good bye and good riddance.

Then waits for the sunrise of a new day.

The Enemy

It's been so long since I've blogged.  I've been doing a lot of writing on my forthcoming (hopefully!) book.  However, I have come across this piece of writing from a few years ago.  Although it is two years old, I believe it captures the essence of what life is like for a parent with chronic illness.  Maybe it will resonate with you.  Here it is:

                                                                      

The Enemy

The enemy sneaks up on me even when I am awake and trying to look around.  It is an evil force that encompasses my body.  The enemy is brilliant if not menacing.  When I blink, it is there squeezing its way into my innermost parts of my body.  My muscles, fascia, and soon my brain.  Exhaustion sets in.  I fight the enemy.  I begin to feel beaten down.  I fight the enemy more.  I pray.  I look at my children.  The enemy knows.  It sees all and laughs at me.  I tell the enemy to go to hell.  Instead it burrows deeper inside me.  Pain heightens.  I drive and pick up my son.  I play with my 2 year old.  The enemy is always present.  I ignore it.  I act as though it is not there.  I keep pushing.  Sleeping isn't enough.  Doctors' appointments.  Hope starts to fade.  Will you play with me?  My heart is rapidly breaking down.  The enemy shines.  It is winning.  I say LEAVE ME ALONE!!!  It never does.  Vitamins, medications, therapy.   Pain becomes practically unbearable.  Loneliness seeps in.  The enemy is winning.  It smiles wickedly.  I pray but lack energy.  Jesus help me, I plea.  But the enemy has broken down my hope and faith.  I cannot find God.  I am lost.  I am so tired.  Pain is everywhere.  My family begins to fall apart.  I know it is I that is the cause.  I am frozen.  I need to lie down. I cannot move or do anything.  I sit and watch as my world crumbles before my very eyes.



Old Journal Entry from 2004; Hope Lost

I found myself going through some old journals of mine for material for my book.  I came across this one and found it so sad but so telling of that time in my life.  Here it is, for what it's worth.

Journal Entry 12/11/04

It's been a very rough couple of weeks.  I tapered off the Zoloft and started Cymbalta in hopes it would work on my pain.  But, either I'm not responding to Cymbalta or it hasn't kicked in yet.  Last week was so horribly miserable.  I didn't feel suicidal but I felt so dead inside.  I just wanted relief.  So, now I am taking the Cymbalta along with 100 mg of Zoloft (half of my previous dose).  Almost immediately after my doctor put me back on the Zoloft, I felt a lot better.  I am really struggling with my role as a parent right now.  I haven't been getting a lot of good sleep and I'm fighting the cold Nicholas has.  But, I have no desire to really engage and play with my little guy.  This makes me feel horribly sad and guilty.  I feel so burned out.  But, why?  Todd's been home all week on vacation.  This has helped me tremendously.  Since my med. change has been so tough and I've been feeling so tired, etc. it's been great to get some relief from full time parenting. 

Nicholas is the cutest, smartest, funniest, most imaginative little boy.  I absolutely adore him!  But, with winter here and the days long and dark and Todd gone 12 hours a day, I feel lonely, anxious and restless.  I'm having great difficulty being motivated and staying in the present.  Then when I do get a break on Tuesdays and Thursdays when he's at his little school, I feel so incredibly relieved.  When I get sitters so I can go to therapy, get my massage or whatever, Nicholas usually loves it.  But, I feel guilty!  I feel like a bad mom or inadequate when I need a break from playing trains or his imaginative animal games.  I feel like I'm failing him somehow.  I still feel so clueless sometimes in my parenting.  I can see clearly who and what I do not want to be.

I don't want to:   -have the TV on all day

                              - leave him alone all day or ignore him

                              - yell, spank or shame him

                             - ignore him so I can do my own stuff

                             - squash his imagination/creativity and self esteem

I do want:  - to read to him

                     -encourage him to play independently

                      - give him uninterrupted time alone with me each day

                      - be silly with him

                      - set clear limits with him

I find this last one so difficult because sometimes I don't even know what is okay and what isn't.  What is good/normal parenting vs. what is poor parenting.  I'm very unsure and confused a lot.  When he ever said, "I need a new Mommy because you are always sick and have too many boo-boos", he really struck a chord in me.  I often feel very broken and incomplete because of my Fibromyalgia.  I'm so tired and sick, especially in this weather.  Just being sick causes me to feel inadequate as a mother.  Not to mention, as a wife.  Todd is pulling 90% and I'm only doing 10% lately.  More guilt.  Add to all of this my desire for another baby and the conflicting emotions that brings up.  Ugh.  I'm thinking of seeing a new naturopath.  The person I was seeing was so nice but just not a clear communicator and I really feel like I need a take charge, motivated person to help me to hope again. 

Is there a lost and found box for hope? 

Enough really is Enough

Well, here I am on a beautiful, sunny summer day inside on my computer.  I am feeling mixed about this.  I would rather be outside sitting (okay, I admit it.........lying) on a chair but I feel compelled to write.  And when I feel that way I can only put if off for so long.  My last entry was all about coming off some medications.  I am happy to say that I am still here and did not fall off the planet as I felt I might.  I was successful in coming off one medication.  With the help of my naturopath, detox tea, gallons (I kid you not) of lemon water and literally and figuratively "sweating it out", I made it.  Shockingly, I was determined to wean off not just one medication but two medications simultaneously.  Yes, I like to have very high expectations of myself so that if (more likely when) I am unable to reach those often unattainable goals, I can slap myself around a bit.  It's such fun.  Lest I stay stuck in the past, I must say that I am learning!  It is not too late to re-program our brains, people!  Okay, so it's taken me almost 20 years to begin to actually do this, but hey I am trying!  Coming off medications can turn a fairly stable girl into a cross between Freddy Krueger and Regan McNeil (a.k.a. Linda Blair in the Exorcist).  Truly, I could hardly recognize myself, I was such a mess.  Not only did I feel physically sick, I was also on the most elaborate emotional roller coaster ever to be experienced. I wasn't able to sleep either, which was such a nice addition to all the excitement!  Take pregnancy, puberty, pms, menopause and times them all by 100.  That is a pretty accurate description of how I was feeling.  If you did not have the pleasure of being around me during this time, I'm really sorry you missed it.  I was a blast.   So, in the midst of trying to do something positive for my body, my body was also in complete upheaval and turmoil.  "How can this even be worth it?", I would cry to my husband.  I believe he was thinking the same thing, although I doubt it was about my medication!  On the sixth day of not sleeping, I finally realized that, strangely, I am not Superwoman.  This is always such a shock to me every time I come to this conclusion!!!  Enough was Enough!!!!! So, I sucked it up and went back on a small dose of my Klonopin so I could get some desperately needed sleep.  That first night of sleep was as good as eating the most decadent chocolate dessert.  I cannot even tell you how amazing I felt after a few more nights of blissful sleep.   So, as if I needed any added proof, I knew I had made the right decision.  However, the Wellbutrin is gone.  So are the little electric shocks that made me feel like I was going to tear my hair out.  Phew.  I made it.  Okay, so, I'm still on some Klonopin. However, I am down by one full dose.  And you know what?  That's okay.  I am okay (I may be channeling a little Stuart Smalley here).  I'm doing exactly what I would tell my best friend to do.  I'm taking care of me.  So, maybe I really want to get off the Klonopin forever.  I will.  When I'm ready.  Right now, I am enough.  And isn't that what we all need and want to feel in the long run?  Ahhh.  Maybe I do have some super powers after all.  I'm Super Me.  And that is good enough.

I'm sorry, I didn't realize I was an addict.........

So, did I get you with the post title?  No, it wasn't just a trick to get you to read my entry.  And, no, I'm not secretly a heroin addict.  But, I might as well be.  For the past 3 days I have been sweating, shaking, unable to sleep much, experiencing heart palpitations, mood swings, and irritability (that's a nice way to say I am biting everyones heads off and eating their bodies for dinner).  Why is this happening?  That is an excellent question.  I think I have the answer for you, although be warned.  You may not be ready to hear this or may not want to hear this. Truth be told, I don't either but here it is.   I have been on Wellbutrin and Clonopin for at least four years for depression and anxiety.  Interestingly, I began the Clonopin to reduce the anxiety that the Wellbutrin was causing me whist battling my demons of depression.  So, here I am years later unable to make my leg stop bouncing as I write this.  Over the past 5 weeks I have slowly been weaning off of these medications.  The key to going off meds is to, 1). do so with a doctor's guidance, and 2). do so very slowly.  Okay, no problem.  I am a good little patient.  I followed the rules.  So, why on Tuesday, after having had my last doses of these meds five days previous, did I suddenly get so sick?  It started with my jaw feeling so tight and cramped that I could barely move it.  My heart was jumping out of my chest and my body was now a home for electrical shock treatment.  No, I did not go to the hospital for electric shock therapy.  No need to.  My body was doing so all by itself.  So, here I am at home with my boys and it dawns on me that this may be medication related.  Hey, I hadn't dropped dead yet so I felt fairly confident that I could cross a heart attack off my list.  It was confusing to me.  I had been off the meds completely for five days.  Why now?  Everything was going swimmingly.  In only a few days time I went from peaceful and feeling healthier than I have in over a year to being a crumpled mess.  A recommendation from my medical doctor to go back on low doses of the meds to ease the symptoms was tempting.   However, my stubborn and pure bull headedness roared louder than any medical professional could.  I then called my naturopath and once I heard  her warm, kind and supportive voice, I realized that tears were falling down my face.  Instructions to drink my detox tea, increase my lemon water, continue to take my milk thistle tincture, purchase something called oats grass tincture and to call her today if I'm feeling horrible, calmed me a bit.  This is not to say that my symptoms lessened or that I was any more pleasant to be around.  But, I made it through the night and here I am, bouncing leg and all, writing this.  2 quarts of lemon water, and 5 cups of detox tea down and despite my killer headache I know I am doing what is right.  For me.  This is, perhaps, the most important message in my post.  We all have gut feelings for a reason.  Over the years we may have lost our ability to connect with ourselves.  This happens.  However, we can all reconnect and listen.  My time to wean off medications is now.  It was not my time years ago or even 6 months ago.  Not everyone needs or wants to do this and that is okay.  The key, I think,  is for all of us to grow confident in listening to our hearts, our guts, ourselves.  If I survive the next few days of detoxing I think I will be happy I listened to mine.  I promise to let you know.

New Study on Fibro/CFS and Thryroid Disease

Busy days here lately and this week is all about keeping me well enough to go with my husband to the Emmy's in Boston on Saturday.  Hence, lack of blogging.  This girl's eating well, napping when possible and taking more supplements and vitamins than I can stomach.  No, seriously some of them are really gross!

However, just came across this article and found it very interesting.  I like to read research and studies.  Sometimes I read too much.  It's like watching a bunch of news channels all at once by just clicking to switch back and forth from one to the next.  Gotta make sure you've got the FULL story!!!  Needless to say there are times that I need to calm down. 

I'm adding this link here http://thyroid.about.com/cs/fibromyalgiacfs/a/cfsfibrothyroid.htm

Having recently been diganosed with hypothyroidism, this interested me in particular.

So, take it for what it's worth.  We just need to remember our worth and our own power to read studies, research and then live our lives the best we can.  

To quote a bumper sticker, "I Have Fibromyalgia but Fibromyalgia Does Not Have Me".

Giddyup!

The Most Painful Symptom of All

So, I have been avoiding writing.  Not really consciously but deep inside I just felt blocked.  Well, I realized that maybe the reason I haven't been writing is because I have been feeling so much all at once.  What a perfect time to write, right?  Well, not exactly......for me, at least.  Add this to the list of "what I am working on".  

For most of my life, I have been uncomfortable with negative emotions.  Anger, for one.  This is fairly typical of most women, so I've read.  I have been holding in so much anger as of late that before I explode (picture the blueberry girl from "Willie Wonka and the Chocolate Factory"), I am going to go out on a limb and talk about my anger.  Well, at least write about it.

Chronic pain and exhaustion and all the limitations they create, just plain stinks.  I can manage it most days.  But lately I feel pulled back to where I was when I first was very sick.  This is so unfair!, I scream in my head.  Just watching someone jog by my house, makes me tear up and cringe.  You have no idea how luck you are! I want to yell out my window.  

Where did all of this suddenly come from?  Well, I think it began a week or so ago as I was leaving the "preschool" (okay, daycare) with my little one and I saw a woman with a baby.  She was trying to get out the door with her stroller, diaper bag, etc. along with her preschooler.  I quickly helped her, and suddenly I looked at her face.  That is when I realized how ill I am.  I can barely manage to get through the day and here she is with a beautiful baby.  I watched her leave as her little girl got on her bike and off they went, mom power walking with the stroller and little girl happily riding her bike.   I realized the vast difference between this woman and myself as a little piece of my heart cracked and slowly broke off.

My four year old has often asked if we could walk to "school".  Environmentally speaking, we really should.  The healthy person I once was, would not think twice about it.  Of course, we will walk.  It's ridiculous to drive when it is so close to our home.   However, that woman is not who I am anymore.  Of course, I still care about the environment.  Each time I drive back and forth the short distance to daycare, I feel the guilt.  I keep telling him, "maybe someday when mommy is feeling up to it, we can walk".  I try to believe this in my heart.  I want to be that mom.  I am that mom, deep inside.  Yet, she is trapped by this ugly disease (sorry, syndrome) that holds her captive and only lets her out on good behavior once in a while.

Just the other day my fourth grader asked me to take him outside for a bike ride.  It was 6:30 p.m.  Spring has come and with it the longer days.  It was a perfect time to go outside.  My yearning to take my children outside was so intense it was palpable.  My back was in a spasm, my neck felt like someone was stabbing me with a knife and my body could barely hold itself up.  I had to say, "No, honey.  I'm sorry.  Mom just isn't feeling well enough".  He then asked when he could have a friend over.  I began to see red.  Hatred and rage filled my insides like bubbling lava about to erupt.  I looked at my beautiful son and snapped at him.  He was instantly crushed and walked away.  At the time I was thinking, "What do you not get?  I have been limping around since you got home from school, begged you to help me unload the dishwasher because my back hurt too much to do it alone, and can't you see I am doing the best I can??!  How about a little empathy here!  Is that too much to ask?!"  Thank God, these words did not actually come out of my mouth. Quite honestly, I cannot remember exactly what I did say.  But, I will never forget what he said.  "I'm sorry mom.  That was a stupid question".   That was a stupid question.  Asking me if he could play outside and if he could have a friend over to play this week was a stupid question.  

After my husband got home, I asked him to take the kids outside (which he did) and then went to bed.  I felt so depressed, I just wanted to go to sleep and let the next day come.  Of course, I couldn't sleep.  When the boys came in to say goodnight, I spoke to my oldest and apologized about the anger in my voice.  I tried to explain to him that I was angry because more than anything I wanted to play outside with him.  There is nothing that makes me happier than to have his friends over and to hear their joyous laughter and watch their imaginative play.  I am, I told him, really angry at my Fibromyalgia.  I am not angry at you.  I want you to ask to do things.  Please always ask, I implored him.  I will do my best to say yes when I possibly can and I will say no when I can't.  We hugged and that was that.  I have no idea how my reactions impacted him.  I have no idea how much of my apology seeped in. 

Feeling so exhausted, I tried again to sleep.  Yet, sleep did not come.  Too many feelings happening at the same time.  I tried to read.  I tried to watch T.V.  I tossed and turned.   My husband came in to check on me and also to ask if he had done something wrong because I was acting as though he did.  I told him how angry I was feeling and how it wasn't about him or the boys.  He nodded, said goodnight and closed the bedroom door.

The thing is, it IS about the boys and my husband.  Maybe not intentionally, but all of this pain, exhaustion and emotional ups and downs affect them in a way I will never know the depths of, nor will I truly understand. 

In my world of chronic illness and chronic pain where I often feel no one understands the intensity of what I am going through, I suddenly realized that I, too, will never understand the emotional impact that this damn thing is having and will continue to have on my family. 

And that, my friends, is the most painful symptom of all.

Grace Under Fibro: Betrayal and What We Can Learn From It

Grace Under Fibro: Betrayal and What We Can Learn From It

Betrayal and What We Can Learn From It

Yesterday was Holy Thursday, the night we remember the Last Supper when, among other things, Jesus had to say goodbye to his best friends, knowing his fate.  He knew the path God had chosen for him.  He also knew that two of his disciples would betray him.  Think about it.  Imagine two of your closest friends turning their backs on you during a frightening, emotional and painful time.  Even when Jesus begged his friends to stay awake with him in the garden to pray, after saying they would never abandon him, they did.  They were human.  They fell asleep. 

As a Catholic, this week my mind is very much on Jesus' suffering.  He did not run away from it.  I think I might have tried.  I don't know.  When pain or fear comes our way, isn't it instinctual to turn away from it?  Or would I have the courage to stay and deal with it head on?  I'd like to think that I would never have been the friend who would betray Him.   But, would I?  Those were scary times and under the pressure of it all......... I just don't know.  When Jesus was condemned to death by crucifixion, He accepted it.  The ultimate betrayal but He did not fight it.  Courageously (on what we now call Good Friday), He carried that awful, heavy cross on a horrendous journey to Calvary, all the while being harassed and jeered at.  He was nailed to the cross and ultimately died on that cross for everyone, even those who betrayed, hated and abandoned Him.    

I've been thinking about how He walked through all that pain, emotional and physical.  Under the weight of His cross, He fell down a few times.  Yet, He did not stay down.  Instead,  He found the strength to get up again and continue on carrying that horrible cross.  He said to God, His Father, "Thy will be done.  Not mine."  Jesus was scared but He knew this was the journey God had wanted for Him.

I have been unable to blog for the past several days due to very high pain levels.  I have missed it!  Blogging is so cathartic and, for me, an excellent way to uncover emotions that I have been holding deep inside of me.  That, and I am remembering how much I love to write. 

However, with Fibro  and Chronic Fatigue,  my body often betrays me, many times without warning.  One day I can get out of bed and the next, I am barely able to move. Despite the fact that I have lived with this body betrayal for many years, I still have a hard time letting it just roll off my back.  Often I am angry and many times I feel sad and grief stricken.  To be honest, these feelings actually annoy me.  I know this is going to happen at some point, so why do I feel so upset when it does?  I am learning to try to stay in the moment and live in the pain and fatigue until I am able to pull myself up by the bootstraps (okay, pull myself up with my cane. It's a very attractive sight) and try to live some semblance of  a life.  

So many thoughts flood my mind right now.  How do I handle betrayal?  Am I able to find it in my heart to humble myself and forgive or do I hold a grudge and let it fester inside of me.  When I "fall down" with illness, how often do I get back up and keep walking through the pain with unflappable faith?  Or do I try to escape my pain and fall into depression? All good questions.  Do I have the answers to all of them?  Not really.  I know that I try to live in the moment and lean on my faith to help me.  I know this illness has taught me a lot about patience, acceptance, empathy and never giving up.  Some days I am stronger than others.  Some days I wake up knowing I am on the path I was meant to be on.  Many days I have endless hope.  I certainly keep trying new ways of relieving the pain and fatigue.  Some days are just plain, old rotten.

I've lost friends throughout my journey with illness.  I've been called a hypochondriac, told that if I exercised more I wouldn't be so sick, and been told to quit whining and get over it. 



Not being heard hurts.  Losing friends hurts. Betrayal hurts.   Even if I suspect it is going to happen, it doesn't make the pain lessen.  However, I can choose to keep on with my life.  I can set boundaries to take care of myself and I can also forgive.  I'm capable.  It is far from easy.  But, it can be done.  

In my small corner of the world, I can pick up my own cross and continue on.  I have people who believe in me, support me and love me.  I am not going to die from this.  I can choose to keep walking through the pain, continue to grow and keep hope in my heart.