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.