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.   

Hey, Fibro- you can't take THAT from me!

Outside it is looking very gray and feels really chilly.  I knew it was raw out before I even got out of bed.  Yes!  I am that old lady who says, "must be a storm movin' in.  I can just feel it".  Seriously, I can.  Tut, tut, feels like rain. 

Suffice to say that my pain level today is high.  Aside from the obvious physical pain, I think the most painful part of having chronic illness is the loss of self.  When you have chronic pain, your life changes drastically.  Fibromyalgia and Chronic Fatigue Syndrome have taken so much away from me.  These illnesses have invaded my life and stolen who I was and replaced her with a sick body.  Yet, it didn't stop there.  These illnesses destroyed my definition of myself, changed my relationships with people, forbade me from doing the things I loved and turned me into someone, who to this day, I often do not recognize. 

Having said that, today I have been blessed with good spirits. The day did not start out this way, though. As I sat on the floor playing with my four year old, I couldn't help but think of all that I could not do with him.  It would have been a great day to go to the library, for example.  From there, my mind spun into thinking of all the things I can no longer do and how much I miss doing them.  Suddenly, in the middle of music play with my little one, I was hit with the thought of all the great things I CAN do.  I decided to make a list of what I cannot do and what I can do.  Here they are:

THINGS I CANNOT DO AT THIS TIME

I cannot run, or even walk much. 

I cannot take any dance classes

I cannot be in any shows

I cannot make plans with anyone for anything and know that I will be able to follow through

I cannot vacuum

I cannot dust (wait, do I really care about this one?)

I no longer have the freedom to wake up, take a shower and get dressed without a thought of pain

I cannot work

I cannot drive a car for more than 20 minutes or so on my good days

I cannot run around with my kids at the park or take them anywhere that would mean standing for more than 10 minutes

I cannot go anywhere that has potential illness.  Despite good hand washing, eating well and sleeping, I get everything and anything that is going around.  "Just a cold" for me is an automatic 10-14 days of hardly being able to get out of bed.

THINGS I CAN DO AT THIS TIME

I can read to my boys

I can sit on the floor (with support) and be the silly voices of my little one's toys

I can shower on my own

I can help my older son study for a test

I can encourage my husband about his work, both at home and at his job

I can be a good listener to my children, husband, friends and family

I can laugh out loud

I can pray

I can do some gentle yoga

I can do my best to eat nutritious foods and drink lots of water

I can pull up a chair and watch my son's latest creation on Zoo Tycoon

I can smile

I can give my love to my friends and family

I can be kind to others, even if it is only over the phone

I can accept help from family members who will take care of my boys so I can rest

I can read most days

I can feel pain, both physical and emotional, and choose to be in it and not try to run away from it or numb it

Hey now, that is a lot of "I cans"!!!!    Okay, now before you roll your eyes and think "this girl is such an annoying Pollyanna", please remember that this is conscious work.  This kind of thinking does not come easily for me.  Believe me, I've been sick and tired for over 16 years and the last 4 years have been the worst.  But, you know what?  Today, right now, I am okay.  Today the glass is half full. And, really, isn't today all that counts? 

I'm learning to just "be" and realize that that is enough.  I am enough.  Tomorrow will come with its own set of challenges.  But, for now I am feeling blessed.  No illness can take that away from me.

Putting on my Oxygen Mask

Okay, so again I had to cancel plans with a friend today.  Although I have had a lot of practice in this area over the years, it is still one of the worst parts of being sick.  It is embarrasing, for one.  You make a plan and then suddenly you can't follow through.  My friend, fortunately, was understanding or perhaps just expected it as this is about the 4th time I've had to reschedule.  We did get one time in together somewhere in that mix.  So, we will get together tomorrow.  I hope. 

When I woke up this morning, I could hardly move.  It was a real chore to get my body out of bed.  Everything hurt so much and for much of the morning I was unable to even stand up straight.  My back, neck, shoulders and hips were not happy.  Consequently, neither was I.  I had a terrible time getting to sleep last night.  I still feel as though I didn't sleep very well, despite taking my sleep med. 

Anyway, I had a very important appointment this morning with my naturopath whom I get to see only about twice a year due to finances.  However, she is so great that I dragged my sorry butt into the shower.  Thankfully, the shower gods were smiling upon me today as I got nice hot water.  This helped.  However, the washing of my hair almost did me in.  I think I still have some conditioner stuck in my hair, too.  Washing hair is a feat in and of itself with Fibromyalgia.  Then it was time to get dressed.  At this point, I am ready to lie down on my bed and go back to sleep. 

Must. Carry. On.  Getting dressed hurt a lot and took me a lot longer than usual so now I am "running" late.  I do a lot of running.  Just in the form of being late.  However, in the final outcome I was on time and had a great appointment and got so much information that my eyes were glazing over.  My doctor saw this and she wrote everything down for me and we went over it again so I am pretty sure I know what to do.

I get home and realize two things; I must eat and I must sleep.  Hence, cancelling with my friend. 

So many people have been telling me for years that I need to take care of myself so I can be the mom, wife, friend I want to be.  Not an easy task for a girl who has generally put everyone else first in her life. 

But, I am learning.  My oxygen mask is going on now.  It's only Monday.  If I don't do it now, this will be one terrible week.   So here goes.  Breathe in and out.  I'm on my way.

Sunny Days and Sundays Always Get Me Down

I missed church today.  Again.  It's not that I feel guilty.  In fact, I do not.  I feel sad.  I miss being in church and being in that community.  Today is Palm Sunday which I really did not want to miss.  Last night I was supposed to go to see a show with a friend and had to cancel last minute.  My neck was in a painful spasm and my head was pounding.  I felt very fatigued.  So, once again, I cancelled.  I half jokingly called after my friend as she was leaving, "don't give up on me!!".  Fortunately, I know she won't.  She's not that kind of friend.  So, I figure I'm sad to miss going out and seeing a funny show.  Okay, let me be honest.  I was excited to take a shower and wear make up!   That right there, is an exhausting but exciting feat!  I consoled myself last night by telling myself I did the right thing.  I can't push myself.  As I lay in bed with heat on my back and neck trying to go to sleep, I felt sure I'd be able to go to mass today.  Even if that was the one and only thing I did today, I could do it.  Yeah, that didn't happen.  I woke with a horrible headache and my body felt like an 18 wheeler hit it.  I was actually kind of angry.  I'm thinking, "hey, you......yeah you, body.  I'm talkin' to you!  What is your deal?  I give and give and what do you give in return?!  Yeah, I'm not too fond of you, either".   I made a concerted effort to come downstairs, especially since my little smiley faced son kept peeking into our bedroom and asking me to come downstairs.   I drank large amounts of water and also my usual 2 cups of coffee.  That along with a migraine med seemed to do the trick.  My husband and I actually got to sit at the table and talk.  We caught up on all kinds of things and that was nice.  Like most busy families, we don't have a lot of time for conversation, so it felt good to both of us.  However, soon it was apparant that I could no longer stay up.  My whole body ached like, well like it usually does, as though I had the flu.  My husband came up later to see if I needed anything and I just broke into tears saying, "I'm so sad.  I'm just so sad".  What can I do, he wanted to know.  Can you just hold me, gently, please?  He did.  He then suggested that since it had turned out to be such a beautiful sunny day, that we could go on a family walk.  Though that would be a dream to me, the thought made me feel more empty.  I reminded him that I am working on being able to walk around the block.  To which he responded that we could all walk a bit around the block, go for a drive or out for supper.  I smiled weakly.  I love the sunshine and since Spring has hit us, I have been on my steps in the morning drinking up the rays of the sun as I enjoy my coffee.  However, today the sun seemed to be taunting me.  It seemed cruel.  I felt like I was being teased.  Then I started to feel more sad.  The boys went to the park with their dad and I made a decision.  I need to cheer up.  What can cheer me up?  A large amount of chocolate would be lovely, thank you.  Sadly, because I think of this as a comfort so much, we do not have chocolate in the house.  Okay, what else?  Dance.  As a trained dancer it is very hard to live without that in my life right now.  Right then.  Not today.  Pray.  But, that means I have to pray and THEN cheer myself up.  I don't want to pray.  I'm not in the mood.  Well, guess what?  I realized that if I chose to pray I could stay in bed!  So, I just did my usual conversational prayer, nothing fancy and then just lay upon my bed.  I felt the urge to do some very deep breathing  and followed suit.  Then I decided to say my rosary.  I didn't really have my whole heart in it, so I figured it wouldn't work but I gave it a shot.  A bit later, I felt like I needed to get up.  I went downstairs and did some gentle yoga poses that felt really good.  My neck was still killing and my body ached.  But, my heart felt better.  I was aware of the sadness that missing church and going outside with my family brings to me, but it did not own me.  I suddenly realized that, although I love my community at church, I don't need to be at church to find some serenity.  My ADD personality fights it, but I can quiet myself right here in my own home. After yoga, I listened to some of my favorite songs and sang along as loud as can be.  Yup, my windows were open.  Yeah, I'm sure people heard me.  But, you know what?  I didn't care.  I sang and sang my heart out.  I can do a mean rendition of  Gooch's song from Mame.  Yeah, baby.  That's how I roll.  Now, the sun is setting and I'm much more at peace with it.  Looking back on today, can you imagine if it snowed?  Now, that would need some serious chocolate.

We will be heard

Okay, so I've been ill off and on basically since I was about 22 or 23.  I was one of the lucky ones, needing only two years to be diagnosed.  Anyone who does not live with chronic pain can't imagine the joy of  being diganosed after being sick for so long.  So, for those of you who are here to offer support to friends and loved ones, here's how it works.  After being tested for everything in the sun and having all of those tests come back negative and hearing over and over that "it's probably just depression" or "let me refer you to a psychologist"  to the blatant "You are quite simply a hypochondriac.  Nothing is really wrong with you.".  Ouch.  Upon hearing those words, we the sick, actually would love to smack said idiot who is looking at us with that look of disgust and condecension.  That is, of course, if we could stand up.  So, when that wonderous day comes when you are on your 10th or so specialist and this person says to you, "you have Fibromyalgia", the following goes on in your head.  "YES!  It is NOT in my head!!!  YES!!  I have....um....Fiber well, something, whatever!  I have a diagnosis!!!  I TOLD you all I was sick!!".   The excitement of finally being taken seriously is equal to the excitement of being proprosed to.   Having an actual  medical diagnosis for this terrible exhaustion and pain you have been experiencing for so long seems occassion to celebrate.  I kid you not.  As I hobbled out of my medical goddess's office, in my mind I was dancing, clicking my heels up in the air all the while with perma-grin.  Yes, ladies and gentlemen, call it pathetic but there is nothing like someone hearing you.  I mean, really hearing you.  Maybe what is really pathetic is that 16 or so years later, people like me are still so ill.  They are still being looked at with that dazed look, given prescription after prescription but still no diagnosis.  Being pushed aside, swept under the perverbial rug.   I have many years experience now.  I still have to advocate for myself.  When I am too sick to do this, I need to appoint someone else to do so for me (my mom, my husband, etc.) because we all deserve to feel better.  We all deserve to be taken seriously.  We all deserve to be heard.   You will be heard here.  I promise you that.