SO accurate. 

"Acquiring a disability is a bit like getting home to find there’s a gorilla in your house. You contact the approved and official channels to get rid of infestations of wild animals (in this case, the NHS) and they umm and aah and suck air in through their teeth before saying something roughly equivalent to “what you’ve got ‘ere, mate, is a gorilla, and there ain’t really a lot what we can do about them, see…” before sending you back home to the gorilla’s waiting arms.

The gorilla in your house will cause problems in every part of your life. Your spouse may decide that (s)he can’t deal with the gorilla, and leave. Your boss may get upset that you’ve brought the gorilla to work with you and it’s disrupting your colleagues, who don’t know how to deal with gorillas. You’re arriving for work wearing a suit the gorilla has slept on. Some days you don’t turn up at all because at the last minute, the gorilla has decided to barricade you into the bathroom or sit on you so you can’t get out of bed. Your friends will get cheesed off because when you see them - which isn’t often, because they don’t want to come to your house for fear of the gorilla and the gorilla won’t always let you out - your only topic of conversation is this darn gorilla and the devastation it is causing.

There are three major approaches to the gorilla in your house.

One is to ignore it and hope it goes away. This is unlikely to work. A 300-lb gorilla will sleep where he likes, and if that’s on top of you, it will have an effect on you.

Another is to try and force the gorilla out, wrestling constantly with it, spending all your time fighting it. This is often a losing battle. Some choose to give all their money to people who will come and wave crystals at the gorilla, from a safe distance of course. This also tends to be a losing battle. However, every so often, one in a hundred gorillas will get bored and wander off. The crystal-wavers and gorilla-wrestlers will claim victory, and tell the media that it’s a massive breakthrough in gorilla-control, and that the 99 other gorilla-wrestlers just aren’t doing it right due to sloppy thinking or lack of committment. The 99 other gorilla-wrestlers won’t have the time or energy to argue.

I have known people spend the best years of their life and tens of thousands of pounds trying to force their gorillas to go away. The tragedy is that even if it does wander off for a while, they won’t get their pre-gorilla lives back. They’ll be older, skint, exhausted, and constantly afraid that the gorilla may well come back.

The third way to deal with the gorilla in your house is to accept it, tame it, and make it part of your life. Figure out a way to calm your gorilla down. Teach it how to sit still until you are able to take it places with you without it making a scene. Find out how to equip your home with gorilla-friendly furnishings and appliances. Negotiate with your boss about ways to accomodate, or even make use of, your gorilla. Meet other people who live with gorillas and enjoy having something in common, and share gorilla-taming tips.

People get really upset about this and throw around accusations of “giving up” and “not even trying”. They even suggest that you enjoy having a gorilla around because of the attention it gets you (while ignoring the massive pile of steaming gorilla-turds in your bedroom every morning and night, not to mention your weekly bill for bananas). The best way to deal with these people is to smile and remind yourself that one day, they too will have a gorilla in their house.”

-Unknown

My Body

Today, in a fit of extreme gratitude, I impulsively kissed my arms like I would a child, and cradled myself. All I could do was speak thanks to this vessel that is burdened everyday, but treks on regardless. Over these last 5 years I have spent more time being angry at my body then I ever have in my life. I have hated it, wished for a different one, felt resentful at the sickness that changed everything. But along the way, I stopped hating it. I started to realize how strong it really is, and how courageous. How it allows me eyes to see, ears to hear, legs to walk and dance and play (albeit with repercussions, but I still have the ability), a voice to speak, arms to open books and hug people, and all of the mysterious inner workings that are not visible to the eye.

I started to really love it. 

During the really dark seasons of this journey, when the depression engulfed me and anger was my best friend, I gained a lot of weight and grew to be the heaviest I'd ever been. The secret life I had of binge eating- sometimes 2-3 bags of candy a night, hiding food, and hating myself, was a cycle I could not escape. No one knew about my self-loathing, or if they did, they did not know how deep that self-hatred went. How could they when I didn't even know? Like most things, I did not realize what I had until it was gone, and what I had was a thick wall of sadness and self blame for being ill. I felt like I was a failure, that I would never be functional in any capacity again. I took all of the judgment cast on me from those who refused to accept the new me-  the me in transition, as I struggled through the stages of grief on an endless loop- and the judgment I placed on myself, and I just sank. I sank so far down into the depths of endless blue of the mind. I could not, for the life of me, get out.

There was no one moment that brought me clarity and acceptance, and I've learned that acceptance is actually quite fickle. It would be dishonest to say that I never have moments of anger or sadness anymore. My moods are sometimes contingent with how much pain I am in, or how severe the exhaustion is, just like a healthy person. When we are sick with a cold, or tired from a long day at work, sometimes we may be grumpy. A healthy person has moments of feeling blue, even if they are regularly a joyful person. And that is where I am at. All of the moments over the last few years, each tearful prayer, each time I sat in silence before God- stubborn and resentful or heartbroken, each friend who spoke encouragement and life, each book or movie or quote that lifted my soul, each new victory (moving away, rediscovering who I am aside from daughter, friend, sister, aunt, niece, cousin, mentor, nanny, conquering the sugar addiction, losing weight, traveling, riding the bike, juicing, and everything else), each gentle moment... they all strung together and gave me my life back.

It took long enough.

I say that in jest, but there is also a grain of truth in it. The process wasn't pretty. All of the worst parts of myself taunted me on a daily basis. I could access the joy deposited in me by the Holy Spirit, I could find happiness in some incredible moments, I could laugh and smile and talk with people, but I couldn't hold on to the peace. It would slip away and I would fall backwards; down, down, down into the rabbit hole of self loathing and desperation. I said and did things as if I were someone else. I was someone else. 

A transitional version of the self is still the self... except it also isn't. How could one be an anchor when everything has been dismantled and they have no idea who they are, what to do, how to be?

That's how sickness is. It comes in and turns everything upside down, and then it sets up camp. It gets comfortable: a vine twisting through the soul, choking off every sweet and wonderful thing. It terrorizes, both physically and mentally. And in that, we must choose: give in or fight and so I fought- sometimes against my own self.

I felt worthless, hopeless, drained, entirely ill, and unnecessary. I begged to not live this way. I strained to hold on to each pleasant moment, desperate for it to carry me through until the next moment. The darkness suffocated and stole until one day it didn't anymore. And it was simply just the moments. The invisible, dot by dot, choosing life, choosing to try, choosing to trust God moments. The waking up everyday, the taking a shower, the talking it out, the praying, the being honest even in the face of accusations, the determination to live anyway.

When I was younger, I prided myself on being strong. Physically and emotionally. I lost a baby and marched on,  I broke my ankle and went in to work the next day, I had a precancer scare and kept on,  I got tendinitis in my dominant wrist and continued to work anyway. I could make that choice. I was emotionally sound and all of those things were temporary... but Fibromyalgia? This is not temporary. This shook everything loose. There could be no pride, there could be no ignoring it (though I tried for 2 years), there could be no easy fix. No, there had to be the moments.

All of that self hate has become self love.

Fibromyalgia has allowed me to learn real boundaries. It has allowed me to appreciate strength- of the will, the mind, the heart, the soul, the body. It has allowed me to face the monsters in my spirit. It has allowed me a true freedom in learning to love myself- sickness and all. I am still in just as much pain and I am still as exhausted as when this journey began, but my spirit is unfettered and my heart has been unclogged for months now.

I no longer blame myself or judge myself for being sick. Sure, I have moments of discouragement (if you ever meet a Christian who says they never have doubt or pain or weakness- don't trust them. They are lying. Knowing Jesus does not make us immune to emotions, it just means we take those weaknesses and let Him work it out. To claim to never struggle is unbiblical and a great disservice to God) and anxiety is a part of the illness. There are very real physical things that happen of which we have no control over with Fibromyalgia but now that the fog has lifted, I understand the power I have in my choices.

I can choose not to participate. In activities, in stress, in conflict with contrary people, in blaming myself, in speaking death over my life, in judgment because I am not able to do what I used to, in anything and everything. I have that power. I can say no. I can live without guilt. I can have Fibromyalgia and not be defined by it.

For a long time I could not feel very kind when otherwise healthy people told me of their common colds or flu viruses. I resented them, because they were complaining but they would be better in a few days and I wouldn't be. I also felt like I had to explain my illness to everyone. I felt embarrassed and earnestly desired for everyone in my life to understand what I was going through. I felt like I owed everyone an explanation for everything. Such lies, but it was all a part of coming to understand that change is not a bad thing, and being sick is nothing to feel guilty about.

Health is a treasure, and of course I miss it. I think a part of me will always long for it. But sickness has been an unexpected treasure, too. I am much more aware of how much the human body does, All of the simple things: brushing hair, eating food, listening to sounds, how the blood flows, the organs that work together to give us one more step, one more day. I feel so very lucky that my body persists even when my emotions have wanted to let go.

Having Fibromyalgia feels like a death sentence 98% of the time, even with acceptance, even with gratitude. But it's NOT. It is so not.

It is a chance to really live. To love ourselves with the same tenderness with which we love others. To choose to be thankful, even when we don't want to be. To say instead to our battered bodies: "hey, thank you for trying today. I know you hurt so bad, I know that fatigue is blinding your senses, but you can do this, you little trooper." It is a chance to know love, and be love, and give love. It is a chance to be so full of wonder for a vessel that wears and tears, but still chooses the YES of living everyday, anyway.

There is power in acceptance, and even more power in choosing gratitude.

I wish this for you, whoever you are, reading this.

We don't have to explain. We don't have to hate ourselves. We don't have to pretend we aren't sick to make others feel better.

WE MATTER. Our feelings matter. Our process matters. Our hope matters.

We have Fibromyalgia, but it does not define everything about us, even when it feels like it does.

Thank you, sickness, for teaching me how to really love myself.

And thank you, Jesus, for loving me even when I am the worst version of myself I can ever be.

New Information for Possible Cause of Fibromyalgia

There is always some new article, tiny bits & pieces given as they try to uncover the roots of our illness. I’ve learned through the years to take it all with a grain of salt. Any information is vital and helpful, but we must still hold tight to not just jumping on any bandwagon regarding Fibromyalgia. 
Hopefully one day there will actually be something 100% accurate and they will find a cure.

http://phoenixrising.me/archives/24936

Thankful

The exhaustion slammed me a few hours ago, which is not entirely surprising considering the insomnia and pain that ransacked me last night.

Chronic fatigue is bitter and ugly. It is a thief, sucking out the weak energy in the reservoir. 

And yet...

I am so thankful. So, so thankful. A year ago I could not do basic things aside from a shower on days of pain and fatigue such as this. But today I fixed the bed, did laundry, made extremely limited small talk, juiced, washed the dishes, plus the other everyday things. And this was after talking on the phone for over an hour last night (this is still VERY exhausting and difficult to do)! It seems so trite, but these little things show progress, and gives me hope that one day I might be able to resume other things, like getting a job maybe. It's a long shot, but I feel hopeful that I can keep eliminating stressors, and figuring out how to manage my version of this illness. 

That's been a major factor: deciding to limit or eradicate one-sided relationships & toxic influences. It's been a struggle my whole life, and learning to let go of that feeling of responsibility for everyone else's emotional crisis' has been so valuable. 

Today, I am thankful for clean water. I am thankful for this bed to lay my tired body in. I am thankful for life. Abundant, beautiful life. I am thankful for family and friends, and an endless amount of grace from my Savior. I am thankful for words and for the amazing privilege of being alive one more day. 

Today is not a very good Fibro day.

I've been doing a lot lately- normal people things, and once again I "forgot" that I'm not without illness. There's a tendency to do that when feeling like tasks or activities are passable. I end up way overdoing it and reaping what I sow.

Tonight, as I sit here with rolling waves of nausea and intense back spasms, just waiting to vomit, I am so grateful that this is no longer the daily norm. Sure, being sick is. But the intensity is not as severe, and it is in these moments that I most understand just how very far I've come over the years.

It's never easy, and it doesn't stop being frustrating, but I know this will pass and I will settle into my daily sick versus this hell.

Please let that be tomorrow.

It occurs to me, only now, after time has passed and the freshness of memory is faded, that before Fibromyalgia, not being strong was never an option for me.

I considered myself to have a high pain tolerance- surely if I endured that monstrous pain of miscarriage, and getting burned on my cervix during that precancer year- then I could handle anything.

I lifted heavy boxes, moved around furniture, and was extremely active.

I never knew how much I took the use of my arms, legs, and back for granted.

I never knew that I shouldn't get irritated at people who walked slow, just because I was always in a hurry.

And that's the thing, there, really.

I was always in a hurry. 

Had I never gotten sick, I may never have known the sweetness of being still. 

Healing

When I think back on the last 5 years, it is with awe. I cannot reconcile the broken, devastated, confused, oh-so-terrified version of myself to who I am today.

When did it change? When did that constant fear transition into this fragile new trust in the One who made me? When did I stop being SO very angry and depressed? When did the cobwebs clear and my soul become so light once more? I suppose the answer is that it was happening the whole time. Every single time I cried, every single moment of extreme weakness, every single feeling of utter helplessness. It was all this continual progression forward, this growth that Abba needed me to have in order to appreciate my body, my life, my soul, my salvation all the more.

I feel like me.

Not the me I was before Fibromyalgia, nor the me I was during the last 4 years of darkness, but a new me. A NOW me. A newly refreshed, rebuilt, and stronger me. And the glory goes all to the Jesus who stood by my side as others left. The Jesus who wept alongside me in the sadness, who felt my rage at the loss of the old life, who loved me so hard when I felt the most unlovable I ever have in my life. It is with tears of gratitude that I write these words. Love. It is powerful. Grace. It is essential. My soul is healed and whole, and while I am still sick, still have my bad days, having my center back, it means absolutely everything.

Those in my sphere have not always been comfortable about my illness and the changes it demanded to my lifestyle. I have been judged and doubted, mocked and emotionally beaten down, I have fought very hard to stay going when I felt the most hopeless. There were so many days where I simply did not want to exist anymore. It was too hard, I felt so weak. All I could do was exist, pray like mad, believe that God is sovereign, that He was breaking me in this huge, massive way so that He could fill me up so sweetly with more of His mercy and kindness. Mostly all I could ever do was hang on in desperation and pray I would make it through somehow.

There are some who would not wish for me to be honest about the severity of that brokenness. I cannot pretend it isn't so. Now, coming out on the other side of that dark tunnel, I understand how very essential it is to be real in the bleak times. This story, this portion of my love story with Jesus, that includes the times when I haven't been my best. When I have felt most damaged and irrelevant. The times when I was so mad that I felt like God had forgotten I am His favorite.

I sit here and I think about how these last few days I have interacted with people, gone out to a restaurant, went shopping, did chores, and did the basic things that once upon a time were SO difficult. Was there really a time when simply going to the supermarket was overwhelming? I would have to recover for days after one outing. Taking a shower was hard work. It is such a precious victory to be able to do more then I have in 5 years! I am still sick. I still require recovery days, and I have learned (and am still!) to erect boundaries, even when people try to demolish them. The truth is, I don't think there is any one magic trick that has resulted in this moment. There have been so many conversations, convictions, prayers, ugliness, doctors, medications, conflicts, and massive self-reflection. It has been the most trying season of my young life, thus far, and I've definitely had my fair share of trials from the tender age of 16.

One thing that has helped immensely is juicing. I don't say that in a gimmicky way, or to insinuate that it has been a cure. It most certainly is not a cure, but it has given me a vitality that lacked before. Inches have fallen off, and my joints are looser and happier without the extra weight. I am not as exhausted all of the time. There were times where I could barely lift my arms or get out of bed, and I would have to force it. Now, I have days of intense chronic fatigue, but I rebound faster then I ever did before. Things are still impossible to open or lift on some days (milk cartons, books, etc.), but I find that my strength is more than it has been since 2010. I feel more alive.

Again, there is no cure. I have navigated this crazy terrain- at first with confusion, and then with extreme frustration, with less than perfect grace.  To go from being adventurous and strong and involved in everything, to being bedridden and so tired and in pain all of the time, was killer. It took an incredible amount of time and effort to make it through. I honestly know that I would not have without Jesus. I am so thankful that He knows what is best for His children, that He removed me from an environment where I was not allowed to be sick, and that He positioned people and circumstances in order to convict me, break me, shake me, and refill me.

He removed every earthly crown I carried: ministry, mentoring, job, car, status, popularity, friendships, pride, and that Western culture contentment I found in being involved at church. And it hurt like being socked in the gut over and over.

I loved those things. I was passionate about those things. I wanted those things.

For a very long time, I thought I would never have anything resembling any of what I had to give up. My dreams dulled and eventually died, depression twisted throughout my soul like branches inside of my body- growing everywhere and choking out the happiness. My passion to go back to the Philippines and do missionary work faded. How could I go when I was so sick? I stopped caring about a lot of things. It was a fight to survive everyday with so much going on physically and emotionally.

There were trickles of sunlight into my soul. Over time, I allowed myself to feel things again, though I refused to dream. I was dealing with all of the losses, one on top of another, and I could see no way out. And it was there that He met me... my best friend, my love, my Savior. He met me again, and again, and again. Every moment when the despair was so thick, when I missed Mylie, missed the girls, missed my church family, missed my 5 mile walks, missed California, missed being healthy. He allowed me to be so ugly and broken before Him, and every time He asked me to surrender my earthly treasures (people, material objects, self-esteem, finances, everything) at the foot of the cross, I went- sometimes hesitant and doubtful. That refinement has been the most beautiful gift in my earthly life up to this moment.

I had to learn who I am without titles, without relationships, without an agenda. I had to face the worst parts of myself, and it was very unsettling at times. I went kicking and screaming at first.

To go through an emotional housecleaning at the same time as having to deal with belittling doctors, well meaning, but ignorant friends, judgmental family members, and a body that is literally in some kind of intense pain 24/7, not to mention that plaguing fatigue... well, it was very hard. ;)

I could not fathom living that way for the rest of my life. The thought filled me with dread.


Thankfully God has revealed to me that I don't have to look backwards. That old me, the one who worked 18 hour days, 7 days a week, always with the kids and meeting friends, and planning events... she was not being her best. The world had me believing that was MY best. To always be so busy, to be involved in everything, to be there for everybody all the time- that was very unhealthy, and in many ways, I am thankful that sickness intervened and forced me to drop everything and reevaluate my entire life. This was always my struggle:

This is what the Sovereign LORD, the Holy One of Israel, says: "In repentance and rest is your salvation, in quietness and trust is your strength, but you would have none of it.
Isaiah 30:15

I knew I needed to rest, but I consistently struggled against it. I had too many commitments, and I wanted to honor them all. Eventually it all caught up to me, and I was exhausted all of the time, and BOOM!- here came the sicknesses that would change my entire world. 

There have been sweet signs of God's faithfulness along the way. His presence has never drifted, even when I have felt like it. That's been one of the biggest gifts Abba has deposited into my spirit through this trial: that we have to be able to rely on Him, and worship Him, and praise Him, and know Him even away from fellowship and a church building. That we have to remember His promises, His provision, His character, even if we are alone on a deserted island, or hidden away (like people in scripture who were driven out or imprisoned), or unable to make it to a building every week. It has made me question who I am away from the fellowship I once took for granted. Who are we away from the christian environment? Does our faith, our reliance on the One, falter or disappear when we are removed from the church? Are we still able to choose Jesus in the storms of life?

Those are the important questions. The ones that have been like a seesaw over these years. Who am I? Who does God say I am? Who is God? 

Something major- illness, death, divorce, loss... when those things happen, we lose something essential within ourselves. That brokenness is very real and we should NEVER be ashamed of that, or pretend it doesn't exist. Pretending we have it all together is not doing any favors for Jesus. Admitting our flaws, our weaknesses, our struggles, our doubts- THAT is what brings us closer to Him. To remember that it's not about us, not about this life, not about what we do or have, not about our triumphs, not about our fragile egos. It is all, always, forever about Jesus Christ. We lose our lives in order to gain our life. 

It's all going to go away... the job, the money, the relationships, the cars, the vacations, the marriage, the bible studies. Of course, we should have those things, and we should sow into them, always with the knowledge that any of those things can be taken away at any moment. That when we are laying on our deathbeds, none of that is going to matter. 

When Jeremy died, that really became so obvious to me. Something I heard over and over from pastors: "it'll all go back in the box," and everything else. To not rely on our earthly victories, to not hold so tight to everything. When he died, I realized that someone I love so much is literally in heaven right now. All of the times we talked about movies, or hung out, or had a friendship- that was fun and super important, but not as important as what his death showed me. He is free. He is whole. He is healed. In heaven, Jeremy is no longer bound to that wheelchair. He is with Jesus. Right now. Today. It gives me chills. It makes me so grateful in a way I cannot fully articulate. 

And I don't want his life to be forgotten, and his death was not for naught. 

Jeremy's death was a huge moment of breakthrough that God used to redirect me on the road of emotional healing. 

With Jeremy's death, Jesus brought me back to life. He breathed new life over my bones, my spirit, my heart, soul, mind, body, and will. He reminded me of what awaits us in the heavenlies, He reminded me of His fiery strength living within me by way of His Spirit, He reminded me of grace and dignity and beauty from ashes. He reminded me that this is all just stuff. Real stuff, but ultimately all just stuff. That every relationship, every commitment, every decision for life: it all rests with Him. 

I get some flack for not being married, for not having birthed my own children, for the choices I have made that haven't made sense to many. Like choosing to love children and pour into them, instead of working some 8-5 office job. My whole entire history is not written out for all the world to see. All the jobs I've held, all the efforts made. And that's okay. It's no one else's business. 

Before I got sick, God was leading me down a radical path, and these last few years have tested that. I have had the temptation to give in to the judgments, I have had the frustration of feeling inadequate in my illness, and I definitely did not feel like some spiritual warrior.

BUT... here's the most beautiful thing: I am called to live radically. 

And what radical looks like in my life might be different than anyone else. 

Radical to me means, believing I will go back to the Philippines. It means being open to the possibility that one day I will be able to work again. It means living my life only and ever for Jesus. It means not caring what people speak about my life, my illness, my heart. It means staying connected to those who challenge me and edify the Lord. It means continuing to live with Fibromyalgia, but not fighting against it anymore. It means choosing wellness- whether that is with supplements, juicing, exercise, choosing not to participate in activities, or sleeping as much as my body needs. It means I choose not to be manipulated, or shamed into making decisions that are not contingent with what God has for me. It means I am 100% free in Christ, and even if no one understands the whys of my life, He does and He will. 

I feel so grateful. My heart cannot take it in. To know so much love is streaming from the heart of Christ to His people, to be a recipient of that love- it is the sweetest present in all of the earth. 

One thing God has shown me, is that I am to be so thankful for my body. I have to thank my nervous system, my immune system, my blood, my bones, every organ. I have to love and cherish this vessel, because He has entrusted me to take care of it. Before, I was so mad at myself for being sick. I felt like a giant failure everyday. I put myself down constantly. I honestly hated my body. But for awhile now, God has been firm about me appreciating my breath and valuing my body every morning. A sick body still needs to be loved. He reminds to stop, to rest, to invite Him into every nook and cranny repeatedly. 

There isn't anything about my journey that is from my own doing. I do not deserve the credit, the praise, the satisfaction of getting through the darkest night of the soul. It all belongs to Jesus. He is the most thorough physician, the most delicate healer, the most faithful friend. I pray that He continues to humble me as I walk along this path. I must be honest and say that I am very thankful that it seems the worst of the emotional trauma has passed! It was a pill to endure, but it has made me stronger, and I will forever be appreciative of that. And it's not the end. Of this I know. There will always be trials, and the sickness invading my body is still there, but now I know I can handle it. I know I am not ever alone, and that where I am weak, He truly is the strongest one of all.

http://youtu.be/qEPNYW99MqA