*This post conveys a day in which I felt utterly dismal. It is not a reflection of how I feel on a daily basis, but it does accurately portray what it is like living in a sick body on one of the harder days. Please read only if you can do so without judgment or Christianese. It takes a lot of vulnerability to share my Fibromyalgia experiences, and I wish not to hear unsolicited opinions or advice. I believe in being honest and although I know my God is faithful, I also know He can handle my tears and frustrations. Lets leave the judging to Him. Thank you sincerely.
From my journal on 10/08/2011
I feel like I can't so anything correctly. Math is all wrong. I cry too easily. I feel impatient and demanding and shrill and needy. I miss Mylie. I miss the girls. I miss my church. I miss the past. I'm focusing on the wrong things. I'm discontent. I feel that I am a burden to everyone.
1:21pm
I miss Mylie. I fell asleep crying. I can see why I had to go but that doesn't make the guilt go away. I feel like "if, if, if." "If" I didn't get sick I would have still been able to take care of her. "If" I hadn't realized the clique-ish wave at my old church I could have stayed in leadership and still been super involved. But that would mean I wouldn't have woken up and that's the worse choice. This guilt has been eating me alive lately. I sit here after a shower trying to drive up some energy to do anything besides sit here.
I don't feel good enough (*major revelation and crucial to my path to wellness). Being so full of limitations has triggered something so deep within me. I hardly want to write that down. I haven't felt like this in years. All of these healed places in me are being ripped open and the wounds feel fresh.
I've been "officially" sick since November of 2009, but symptoms started as early as 2007. Migraines, extreme exhaustion, vertigo, constant colds and flu viruses for 2 whole years before it fully blew up and erupted all over my carefully constructed life. How long will it take for me to accept it? Feeling so bad does not mean I was not healed.
I have been defined by cultural success. I have had a "role" for my whole life. I was a hard worker. I was efficient. I was fast. I was capable.
Lord, I do not feel worthy anymore. Which to me says I felt I earned my worth rather then accepted Your grace and Your call to live a worthy life in YOU. When did I start condemning myself? I see the difference in my outer self. I have become harsh and critical in spirit. I don't feel loving or love-able on days like these and so I project it onto those closest to me. "Hurt people hurt people." I am engaging in activities that only aid me in harboring these negative emotions. Guilt corners me in and I childishly believe that this one journal entry is going to wipe all of this away.
The powerlessness clings to me. I am alone in my struggle. I sometimes have wondered if You have left me. I am a see saw when it comes to friendships. I don't even know what that word means anymore.
I sit here puzzled. Where did my life go? I feel that I must have displeased You to be enduring such strife with my own body. So much bitterness has lodged itself inside of me. I am a cannon of explosive anger and easily irritated. I can't seem to find myself when it gets like this. I am grateful You can read my heart and know exactly what I mean when my words fail to convey my heart.
Anger coils inside of me right now. I find it frustrating to watch others take their health for granted. It angers me when people complain about trivial matters or having a simple cold or headache. I want to be compassionate and loving but how to do that when faced with this wall? I want to scream and wail and cry.
I don't feel like I can climb out of this pot of guilt. I really, literally see myself as a burden. I no longer speak life. My words are complaints. My heart is wedged with bitterness that won't move left or right. I feel like I am pulling everyone down. I know I cannot stay like this but I don't know how to climb out.
Daniel 6:10
Three times a day he got down on his knees and prayed, giving thanks to his God, just as he had done before.
So I will fill up yet another book about these woes and probably burn it someday like all of the others. Jesus, where is my hope? Where is my drive? I feel like I don't care about anything right now. Like I am destructive and all that I touch becomes soiled. How can I know 100% that those are lies from the enemy and still believe them??? Is my life worth it? Am I worth it to You? Why am I afflicted? I understand trials but this feels like torment.
I'm tired of wrestling with myself. I'm tired of being trapped. I don't think I have fully accepted Fibromyalgia in MY life. I have been so busy trying to be validated and accepted by everyone around me that I have forgotten to accept it for myself.
Can I love myself like this? Maybe that is why I think everyone else sees me as a burden, because I feel like a burden to myself. I know what I am supposed to say and how I shouldn't complain but why? That's not real. What's real is admitting that I don't want to take pills for the rest of my life. I don't want to wake up like I did this morning after 10 hours of slumber, and wish for another 10. I don't want to disappoint my mom when she wants me to go to the store with her. I don't want to be "trapped" inside when the weather outside is perfect for a walk. I don't want to read everyone elses Facebook statuses and watch my own life become stale.
I no longer dream of returning to the Philippines. I no longer feel I could ever have a job again. I no longer can eat what I want or do what I want. I cannot enjoy cold weather like I have my whole life because fibro hates the cold. I hate how my wrist and arm can ache all day for no reason. I hate how I can't even comprehend simple things sometimes and how I forget things as soon as they are said and I'm meant with doubtful gazes, "don't you remember?"
No, no I don't an your palpable disgust at my inability to do so really makes me feel worse. I loathe how my main option is to watch television and I resent that I'd rather do that then read sometimes because it takes the least effort.
I pick fights and I eat all the wrong foods (*Again this is indicative of a flare time not in general). I need sounds to not be loud or hugs to be too hard. I feel immense guilt after stating what I need. Everything is an issue.
My days area fog. Even if I enjoy myself I still find that it has all become a blur. A haze of maybe memories.
I feel obligation- thick as anything. As a Christian, as an auntie, as a daughter. To phone calls and Facebook.
I worry. I worry about if I will have to live off of my parents for the rest of my life. I don't feel fun.
I miss being a "mama." I miss field trips and a car full of youngins, talks and carting them all around. I miss them. I miss us. Those were the relationships I never wanted to break up with. And even though they are still in my life, it's different. Very different. My heart is empty.
Because I would still choose that life. The busy, chaotic, crazy life. It was rich and beautiful and it mattered more to me then this dismal, bland, always gray existence.
And those "babies" weren't mine to keep. I was always going to have to let them go.
I loved that life... of toys crowding the backseat, crammed days of swimming lessons, girl scouts, dance class, etc. I loved my car always full of youth. I loved being a mom even though it was only temporary.
Who am I?
Where am I going?
How do I get there?
Goals.
Laughable.
As Teenagers we were told to make 5 or 10 year plans.
Well what of when
life is interrupted by a diagnosis?
Like mine,
Everything stops.
Changes.
And you have to wait
as life rearranges and
rewrites all around you.
Striking out all of the goals and dreams
you once carried so close to
your heart.
Gone.
10-09-2011
Certain truths get buried as I go through guilt and loss and anger with Fibromyalgia. I have to remember who God says I am when it feels like all is lost.
I AM:
strong
honest
hardworking
a good friend
detailed
compassionate
prayerful
open
kind
loveable
worthy
redeemed
powerful
a leader
tender-hearted
silly
excited for life (ZEST)
mama's heart for all children
willing
in love with Jesus
heart for the nations (Philippines)
encourager
intelligent
fun
lyrical
forgiven
worshiper
"auntie janet"
10-10-2011
I am still in a flare, but slowly (oh so slowly!) coming out of it. My perspective changes with the state of my health. Today I am marinating on these verses (see below) to pull me through.
“Come to me, all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. For my yoke is easy and my burden is light.”
Matthew 11:28-30
Do not be deceived: God cannot be mocked. A man reaps what he sows. Whoever sows to please their flesh, from the flesh will reap destruction; whoever sows to please the Spirit, from the Spirit will reap eternal life. Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up. Therefore, as we have opportunity, let us do good to all people, especially to those who belong to the family of believers.
Galatians 6:7-10
Praise the LORD, O my soul; all my inmost being, praise his holy name.
Praise the LORD, O my soul, and forget not all his benefits—
who forgives all your sins and heals all your diseases,
who redeems your life from the pit and crowns you with love and compassion,
who satisfies your desires with good things so that your youth is renewed like the eagle's.
The LORD works righteousness and justice for all the oppressed.
Psalm 103:1-6
He led them by a straight way to a city where they could settle.
Psalm 107:7
Check this out! What a promise!!!!
"I know that you can do all things; no plan of yours can be thwarted.
Job 42:2
Thank you Job for keepin' it real!
Yet when I hoped for good, evil came;
when I looked for light, then came darkness.
The churning inside me never stops;
days of suffering confront me.
Job 30:26-27
Though he slay me, yet will I hope in him;
I will surely defend my ways to his face.
Indeed, this will turn out for my deliverance,
for no godless person would dare come before him!
Job 13:15-16
“Your hands shaped me and made me.
Will you now turn and destroy me?
Remember that you molded me like clay.
Will you now turn me to dust again?
Did you not pour me out like milk
and curdle me like cheese,
clothe me with skin and flesh
and knit me together with bones and sinews?
You gave me life and showed me kindness,
and in your providence watched over my spirit.
Job 10:8-12
If only you would hide me in the grave
and conceal me till your anger has passed!
If only you would set me a time
and then remember me!
If someone dies, will they live again?
All the days of my hard service
I will wait for my renewal[b] to come.
You will call and I will answer you;
you will long for the creature your hands have made.
Surely then you will count my steps
but not keep track of my sin.
My offenses will be sealed up in a bag;
you will cover over my sin.
Job 14:13-17
We can glean SO very much from our brother, Job. What faith!
And after my skin has been destroyed,
yet in my flesh I will see God;
I myself will see him
with my own eyes—I, and not another.
How my heart yearns within me!
Job 19:26-27
Here are some things I am working on:
-walking when my body is able.
-eating more greens and NO sugar (once I have one taste the candida has a party and suddenly my body wants only sugar and my gut has expanded exponentially).
-continuing to purge television shows as they reveal themselves to be vile and senseless.
-staying connected to the body of Christ (those in my sphere whom God has called me to be yoked to. Treasured prayer warriors and friends who share the love of Christ) as I pray about which church to commit to. For a season I am being called to "the wilderness," where God is reshaping what church is really about.
-journaling/worshiping/praying/being in the Word
-learning how to accept illness and how it has changed MY life.
Note:
One thing I have been told repeatedly by caring friends who are in the same boat as me, is that when you are chronically ill you MUST let go of ALL negative influences and relationships. It is a true detriment to the current health crisis. With that said...
I don't have time or tolerance for people who speak words without understanding that the pain I speak of is necessary for growth. That the mountaintop experiences are great but honestly quite pale in comparison to the low, low valleys that bring pain and suffering to the surface so that God can come and make something so amazingly beautiful out of it. I'm not looking for a fad or the neatest new book by a Christian author (though there are some incredible ones. Check out "Kisses From Katie"). I am in pursuit of relationship with Jesus. Authentic, pure, and incomparable to anything else that this world has to offer. More then a spouse, more then children, more then my very breath. In order to have that, I must concede to the trials and bring my heartache to the very one who created this body. I wonder how many times God clucks his tongue as we don't take time to grieve with his other children. Fellowship is NOT about meeting at the local Starbucks or having another "awesome" Bible study (although those things are fun and contribute to personal growth). Fellowship is opening up our hearts so, so wide and taking on what the brethren is going through. It is interceding with all of our hearts and relying on the sweet, sweet mercies from our shared heavenly Father. It is meeting someone through blogger and being eternally connected by the blood of Jesus, having a brother or sister to call or text or spill ourselves to in the dead of night, knowing that our human words will not mean as much as those cries to Jesus do. Fellowship is sacrifice. Fellowship is not candles and tidy prayers while we sip our apple ciders (again, these are all things I have experienced and adore) in the comfort of a living room decorated to the nines. Fellowship is messy sometimes. And there it finds its beauty. What is sweeter then the sight of God's children in the dirt together, believing, honoring, carrying one another when life gets too heavy? What a precious sight that would be to our Father's very heart. No Christian lingo, no platitudes, no cultured pats on the back, but sincere worship and gratitude for a King that laid down His lives for us.
Now that is beautiful.
Going through a health crucible is incredibly difficult. There are days of hopelessness and sorrow, when it seems like nothing will ever be bright again just as there are days of extreme hope and full joy in knowing that there will always be a better day ahead. It gets maddening. A continual process of accepting limitations and adhering to them. Some will try to give advice that you don't truly want. Some will start preaching at you with no heart behind it. Some will offer quick fixes they actually believe will work. So many questions will be asked.... "how is your diet?" or "are you exercising?" Even others who struggle with their own health issues can be dismissive because being sick doesn't fit in their lifestyle, so they don't want it to be allowed in yours. You will lose "friends" and you will lose yourself sometimes. It's permissible to question everything. In fact, something way worse may be occurring if you are not facing these times of extreme isolation and fear.
Drop the pride, drop the pretense. Allow the truth of your situation to reveal Jesus in it. That's a challenge, eh? To lay down our agenda... that neat, tidy little thing that prevents us from fully submitting to God?
