The theme today seems completely about the soul.
From the devotionals this morning affirming what God was already brewing up in my heart about self-condemnation and bitterness and fear, to this online sermon I just listened to... It's all exactly, perfectly relevant to what God is doing in my life at this very minute. I am in awe once again at how much He is involved in the complete transformation of our lives. I pray I never stop learning that. That I will never feel as though I have arrived and sit on some Christian pedestal.
I am not able to go to church every week, and I find great joy that most churches offer online services. Thank you on behalf of all of us who are physically unable to attend. There are a couple of good churches I have visited here, but I still consider TFH my home church.
Sunday, January 27, 2013
Jason Upton - Faith
This is an old favorite and very much needed today.
The last couple of days I reached out to two old friends of mine and asked for prayer. I am so grateful for these two (Theresa and Melinda, that's you!). For always being prayerful, for loving me and pushing me to Jesus no matter what. Thank you for being in my life. Thank you for being my soul sisters through and through. I also shared with my closest friends in my support group online and feel relief once again for the realization that I am certainly not alone in my Fibro journey. To know there are others going through the same up and down coaster makes a world of difference.
I've also been writing in my journal much, much more than usual (it usually takes about 2 months to fill one journal, but I shot through a brand new one I got for Christmas that I just started this month), and my psyche is getting a major workout, as the dreams have returned, as well as the night sweats. I don't mind so much, because I know my mind is working things out. Dreams about huge bugs or being lost or having too much stuff, or church things. All very detailed, mostly involving anxiety, all very much a part of the process.
I've felt very angry and sad as of late, and a large chunk of that is because I was not walking in grace. Because of that I was not showing grace in my life to the people near to me. I was a walking wound, poisoning the atmosphere around me as I oozed bitterness, discontent, and depression. I am not ashamed of that. This too is part of the process. A part of being a Christian is being able to be transparent with my weaknesses and struggles. I am a very imperfect person, who makes mistake after mistake. To pretend as Christians, that we have it all together is very wrong and very unbiblical. The reason we need a Savior is because we are full of sin. I think we forget that sometimes, especially when we've been walking with Jesus for a long time.
In this pitfall I have carried feelings of intense helplessness. Honestly, I wanted to give up. As in, not even try at all anymore. Try to live like this, try to make the best of this sickness filled life. I just wanted out.
So of course (my eyes fill with tears galore here) my Jesus, who absolutely, 100% loves me, came immediately to meet with me as soon as I cried out. There were reminders of His faithfulness, His love, His presence in my life. Little things, but declarations of our love relationship, and it was like a raft out at sea.
I started to tread water again, instead of sinking. I took hold of that raft.
I received two devotional emails this morning that spoke DIRECTLY to my heart:
http://www.aholyexperience.com/2013/01/life-plan-day-planner-sanity-manifesto-printable/
http://www.wisdomhunters.com/2013/01/come-to-me/
I went back to sleep, and when I woke up I got down on the floor in front of the heater and started to journal again. God told me to put on a specific song (http://youtu.be/ZkMKzXshThc) and to just lay out before him. During this time He gave me the image of laying at his feet and just letting my hair wrap all over them. I was clinging to His leg and just letting Him love on me. He showed me to write all of my recent sins and struggles on a piece of paper, and then afterward to simply worship Him in song. Then I took communion and burned up the paper.
That's it. Just like that.
Grace.
Love.
The reminder that I am loved, that I am covered, that He is still present.
My heart is beyond grateful and even though this doesn't make my mood instantly sunshine and rainbows, it does bring me back into alignment with the God of the universe.
The God who loves me, even in my failures.
There are some personal things that He is asking me to surrender and change, and I look forward to seeing how this barren place is made into something beautiful.
To Him be the glory, forever and ever.
Please do keep me in your prayers, as this is a constant struggle with Fibromyalgia. Thank you so much.
Friday, January 25, 2013
The Really Real
*Disclaimer: This is not a Peppy Patty post. This is from my journal and it's not going to lift you up.I'm not wanting advice or comfort or someone's super inspiring story. I'm sharing for those of you are also battling sickness and for those who want to know what I feel.*
Facts:
I AM EXHAUSTED.
I am tired of being sick.
I cannot handle this anymore.
All of my joy is being sapped.
Seriously, the knowledge of many more days like this is too, too much. I am not happy. I am so angry and easily moody. ALL relationships take too much effort. I am so drained of life. I wasn’t this way before Fibro, but after all this time, I have hit a limit. I cannot handle this.
God, are you listening?
I am so miserable. I can’t stand just sitting here waiting for the next, brief version of a good day. I am losing hope. Losing perspective. I do not want to live like this. ANY request from anyone floods me with rage.
I can barely function. I have to wake up every single day, endure a shower, wash clothes, lift a fork to feed myself, try to distract with books or blogs or television, and make it through… only to go to bed at the end of it all, to realize the next day is just going to be a varying shade of today.
This is no way to live. Not at all.
I don’t feel like being a poster child for Fibro wellness today. I’m not some motivational speaker. I have clung to optimism for the last 4 years. When I was kind of sick, then when I was really sick… bleeding, aching, infection after infection sick… and later when I was sick but finally diagnosed… I tried to stay hopeful when I moved cross country, when I had to leave Mylie… I have stayed hopeful through all of the mindless paperwork, all of the rude doctors, all of the crap put in my body.
And now…
Now I just feel hopeless. There were goals, I suppose. Goal one was getting diagnosed. Goal two was finding a doctor to treat me. Goal three was starting treatment. Goal 4 was recovering after the move. Goal 5 was facing my diseases and letting go of my old life. That season was rough, bleak, and absolutely dark. Goal six was finding a doctor here. Goal seven was learning to “manage” my particular sicknesses and work with it. I started another new medication and began to exercise. Life started to have more color during the 5th and 7th goals. I went out more. I laughed more. I found my center again. I felt like life was full of promise. And then I crashed around Christmas. So much stress, but wrapped up as Christmas shopping, a spa day (meant to be relaxing), Christmas and New Years in itself… and everything else that was an activity or a hindrance to my fragile “managed” state.
I muse that perhaps it was getting slightly “managed,” and realizing that was about a good as it was going to get,then being knocked on my behind soon after that, led to realizing that being “managed” means nothing.
ABSOLUTELY NOTHING.
To get “managed” meant a few good months, but still having to endure pain and fatigue every damn day. It meant that “managed” was just a way to pass the time, because this disease is vicious and rude and will rob us whenever it feels like it. Rape of the mind, body, and soul. We do what we can- diet, exercise, meds, rest… but it doesn’t matter really. It’s just passing the time. There is NOTHING that gives us our health back. No amount of exercise allows us to be normal again. Hours of sleep does not replenish. The body is literally under assault all day long.
Chew on that.
Really chew on that.
This is torture.
It’s excruciating.
“Like being nailed to a cross is excruciating?”
Wow.
I hear you, Jesus.
And no, not nearly as excruciating as dying on that cross.
Not even close.
But Jesus?
I have no more grace or dignity with these viruses and conditions sucking the life out of my bones. I have nothing to give and I’m losing the drive to stick it out. I’m angry. I feel the losses every day. Fibromyalgia mocks me. I don’t recognize myself in my behaviors anymore. I’m sullen and sarcastic, morose and private, believing again that I do not deserve to be loved. I’ve said too many unkind things, exhibited too many harsh tantrums. I’ve become a shadow. I covet, I yearn, I grieve. I even hate sometimes. How can I be lovable? How can YOU, God, love me? I cannot forgive myself. I cannot let your blood wash away my harshness. I don’t deserve it.
“Grace is free.”
I want to have this illuminating moment where I just accept that grace anew… not the grace of 2001, or 2005, or 2009, or even the grace of yesterday… but grace for now. Grace for this moment. It seems so unattainable.
All I feel is the tight cord of misery as my bones ache and the exhaustion sucks me absolutely dry.
How?
Facts:
I AM EXHAUSTED.
I am tired of being sick.
I cannot handle this anymore.
All of my joy is being sapped.
Seriously, the knowledge of many more days like this is too, too much. I am not happy. I am so angry and easily moody. ALL relationships take too much effort. I am so drained of life. I wasn’t this way before Fibro, but after all this time, I have hit a limit. I cannot handle this.
God, are you listening?
I am so miserable. I can’t stand just sitting here waiting for the next, brief version of a good day. I am losing hope. Losing perspective. I do not want to live like this. ANY request from anyone floods me with rage.
I can barely function. I have to wake up every single day, endure a shower, wash clothes, lift a fork to feed myself, try to distract with books or blogs or television, and make it through… only to go to bed at the end of it all, to realize the next day is just going to be a varying shade of today.
This is no way to live. Not at all.
I don’t feel like being a poster child for Fibro wellness today. I’m not some motivational speaker. I have clung to optimism for the last 4 years. When I was kind of sick, then when I was really sick… bleeding, aching, infection after infection sick… and later when I was sick but finally diagnosed… I tried to stay hopeful when I moved cross country, when I had to leave Mylie… I have stayed hopeful through all of the mindless paperwork, all of the rude doctors, all of the crap put in my body.
And now…
Now I just feel hopeless. There were goals, I suppose. Goal one was getting diagnosed. Goal two was finding a doctor to treat me. Goal three was starting treatment. Goal 4 was recovering after the move. Goal 5 was facing my diseases and letting go of my old life. That season was rough, bleak, and absolutely dark. Goal six was finding a doctor here. Goal seven was learning to “manage” my particular sicknesses and work with it. I started another new medication and began to exercise. Life started to have more color during the 5th and 7th goals. I went out more. I laughed more. I found my center again. I felt like life was full of promise. And then I crashed around Christmas. So much stress, but wrapped up as Christmas shopping, a spa day (meant to be relaxing), Christmas and New Years in itself… and everything else that was an activity or a hindrance to my fragile “managed” state.
I muse that perhaps it was getting slightly “managed,” and realizing that was about a good as it was going to get,then being knocked on my behind soon after that, led to realizing that being “managed” means nothing.
ABSOLUTELY NOTHING.
To get “managed” meant a few good months, but still having to endure pain and fatigue every damn day. It meant that “managed” was just a way to pass the time, because this disease is vicious and rude and will rob us whenever it feels like it. Rape of the mind, body, and soul. We do what we can- diet, exercise, meds, rest… but it doesn’t matter really. It’s just passing the time. There is NOTHING that gives us our health back. No amount of exercise allows us to be normal again. Hours of sleep does not replenish. The body is literally under assault all day long.
Chew on that.
Really chew on that.
This is torture.
It’s excruciating.
“Like being nailed to a cross is excruciating?”
Wow.
I hear you, Jesus.
And no, not nearly as excruciating as dying on that cross.
Not even close.
But Jesus?
I have no more grace or dignity with these viruses and conditions sucking the life out of my bones. I have nothing to give and I’m losing the drive to stick it out. I’m angry. I feel the losses every day. Fibromyalgia mocks me. I don’t recognize myself in my behaviors anymore. I’m sullen and sarcastic, morose and private, believing again that I do not deserve to be loved. I’ve said too many unkind things, exhibited too many harsh tantrums. I’ve become a shadow. I covet, I yearn, I grieve. I even hate sometimes. How can I be lovable? How can YOU, God, love me? I cannot forgive myself. I cannot let your blood wash away my harshness. I don’t deserve it.
“Grace is free.”
I want to have this illuminating moment where I just accept that grace anew… not the grace of 2001, or 2005, or 2009, or even the grace of yesterday… but grace for now. Grace for this moment. It seems so unattainable.
All I feel is the tight cord of misery as my bones ache and the exhaustion sucks me absolutely dry.
How?
Tuesday, January 22, 2013
Having Fibromyalgia just plumb feels terrible.
Rest, rest, rest. Not so easy to do after a week... three weeks... a month... a year... three...
This is life. On the daily. No pause. Benadryl, Nyquil, Sudafed, etc. does not work for us. EVER.
Someone lamented to me recently about a bout with the flu. How hard it was to walk through the cold, how they bought all these over the counter meds to get better, just how very, very miserable they were. All I could think about was,"at least your flu went away." I didn't say that, of course. I commiserated. I tried to be empathetic. It's hard though. Anyone who says otherwise might be fibbing a little.
See, this "flu" we've got will not go away in a few days... or even in a week or two. These aching, throbbing, weak limbs will not start to feel strong again in due time. This "pull me to the floor, I'm so exhausted" sensation will not be gone soon.
It's here to stay.
We just do what we need to do anyway. We have no choice. We either give in to the misery, get depressed, and feel like the world is out of reach (This happens regularly. The doldrums come with the territory. Take your recent flu story and utter misery and remember how much you moaned and wanted to be left alone.), ignore the very real physical limitations we now live with and end up crashing & burning hard, or find the silver linings wherever we can because it really is THIS hard to be this sick, and we try to maintain some kind of balance between resting and doing what we actually need to do- take care of our children, cleanse ourselves, wash clothes, interact with the people we live with even when our muscles and minds scream, beg, plead, demand bed only please!
It's a nightmare.
I've been in a particularly brutal season, after a few brief months of sunlight of the soul. After all the chaos and denial... the grueling battle between the onslaught of sickness and processing it, I finally felt somewhat managed. But managing Fibro is not an easy feat. Not at all. One tip too far in one direction can cause a severe backlash.
So, I'm still learning. Still getting up, falling down, getting up again. It's times like this that make me want to isolate. I don't feel a part of the world around me. I feel stuck. Rapunzel in her tower. All sadness or displeasure swims to the surface and makes the eyes all grainy. I look for a flower, a cool breeze caressing my skin, the cheerful sound of the child I love and miss, a really good book. I look for hope and try to cling on because it starts to feel very bleak.
Is this real?
Am I crazy?
Is it really possible to feel this much pain?
Surely this is a dream!
Those are some of the thoughts we go through. When the pain is so bad we beg to have the limb chopped off, when the fatigue is so pressing we cannot even think a single coherent thought, when we realize that tomorrow we will have to go through the exact same thing...
Our own private little obstacle course... except ours is made of other peoples voices, televisions in the background, lifting a floofy to wash our skin, getting dressed- and ouch! It really feels like a sunburn! I can't wear anything! My skin is BURNING!-, the hum of the fridge, the water making a wild song as it cleans the dishes, putting on shoes- wait, why did I walk in here?- and it goes on and on and on.
We live for the "good" days, which are truly only passable days. We find our happy and we try to remember it when the sickness is sucking us dry. Bone dry.
We are survivors. We are lucky. We could give in so easily. It's so excruciating and it never stops. The physical pain, but the emotional pain too. The being judged, dismissed, criticized. The way our self-esteem takes a dive and lifts and dives once more, based on how sick we feel that day. We keep climbing up. We are the lone survivor at the end of the horror movie. We are the ones who will always keep you covered. We will not back down. We will not surrender our lives to sickness, even though it damn near gets us too.
We are messy, imperfect, frail and tough together. We cry, we laugh, we scream, we suffer.
We are dreaming in miracles even when we don't know we are.
Someday the world will know the truth about our sickness. They will discover what causes it, discover new ways to treat us, validate all of this agony. We will be more than a Lyrica commercial, more than a magazine article, more than someone's story of Fibromyalgia.
We are writing the whole book with our lives.
In our opening of the eyeballs each morning, in the comforting words we offer one another, in the lifting of the milk carton, in the doctors' offices, in the prejudice against our rosy cheeked glow- "you don't look sick"- in our whole lives...
we are telling the tale of how Fibromyalgia was discovered and understood.
Let us dream.
Rest, rest, rest. Not so easy to do after a week... three weeks... a month... a year... three...
This is life. On the daily. No pause. Benadryl, Nyquil, Sudafed, etc. does not work for us. EVER.
Someone lamented to me recently about a bout with the flu. How hard it was to walk through the cold, how they bought all these over the counter meds to get better, just how very, very miserable they were. All I could think about was,"at least your flu went away." I didn't say that, of course. I commiserated. I tried to be empathetic. It's hard though. Anyone who says otherwise might be fibbing a little.
See, this "flu" we've got will not go away in a few days... or even in a week or two. These aching, throbbing, weak limbs will not start to feel strong again in due time. This "pull me to the floor, I'm so exhausted" sensation will not be gone soon.
It's here to stay.
We just do what we need to do anyway. We have no choice. We either give in to the misery, get depressed, and feel like the world is out of reach (This happens regularly. The doldrums come with the territory. Take your recent flu story and utter misery and remember how much you moaned and wanted to be left alone.), ignore the very real physical limitations we now live with and end up crashing & burning hard, or find the silver linings wherever we can because it really is THIS hard to be this sick, and we try to maintain some kind of balance between resting and doing what we actually need to do- take care of our children, cleanse ourselves, wash clothes, interact with the people we live with even when our muscles and minds scream, beg, plead, demand bed only please!
It's a nightmare.
I've been in a particularly brutal season, after a few brief months of sunlight of the soul. After all the chaos and denial... the grueling battle between the onslaught of sickness and processing it, I finally felt somewhat managed. But managing Fibro is not an easy feat. Not at all. One tip too far in one direction can cause a severe backlash.
So, I'm still learning. Still getting up, falling down, getting up again. It's times like this that make me want to isolate. I don't feel a part of the world around me. I feel stuck. Rapunzel in her tower. All sadness or displeasure swims to the surface and makes the eyes all grainy. I look for a flower, a cool breeze caressing my skin, the cheerful sound of the child I love and miss, a really good book. I look for hope and try to cling on because it starts to feel very bleak.
Is this real?
Am I crazy?
Is it really possible to feel this much pain?
Surely this is a dream!
Those are some of the thoughts we go through. When the pain is so bad we beg to have the limb chopped off, when the fatigue is so pressing we cannot even think a single coherent thought, when we realize that tomorrow we will have to go through the exact same thing...
Our own private little obstacle course... except ours is made of other peoples voices, televisions in the background, lifting a floofy to wash our skin, getting dressed- and ouch! It really feels like a sunburn! I can't wear anything! My skin is BURNING!-, the hum of the fridge, the water making a wild song as it cleans the dishes, putting on shoes- wait, why did I walk in here?- and it goes on and on and on.
We live for the "good" days, which are truly only passable days. We find our happy and we try to remember it when the sickness is sucking us dry. Bone dry.
We are survivors. We are lucky. We could give in so easily. It's so excruciating and it never stops. The physical pain, but the emotional pain too. The being judged, dismissed, criticized. The way our self-esteem takes a dive and lifts and dives once more, based on how sick we feel that day. We keep climbing up. We are the lone survivor at the end of the horror movie. We are the ones who will always keep you covered. We will not back down. We will not surrender our lives to sickness, even though it damn near gets us too.
We are messy, imperfect, frail and tough together. We cry, we laugh, we scream, we suffer.
We are dreaming in miracles even when we don't know we are.
Someday the world will know the truth about our sickness. They will discover what causes it, discover new ways to treat us, validate all of this agony. We will be more than a Lyrica commercial, more than a magazine article, more than someone's story of Fibromyalgia.
We are writing the whole book with our lives.
In our opening of the eyeballs each morning, in the comforting words we offer one another, in the lifting of the milk carton, in the doctors' offices, in the prejudice against our rosy cheeked glow- "you don't look sick"- in our whole lives...
we are telling the tale of how Fibromyalgia was discovered and understood.
Let us dream.
Thursday, January 17, 2013
Restless arms & legs have come back to keep me awake these last two nights. It leaves me to wonder why Gabapentin is not doing its job.
I've decided to up from two pills a day to three, just to see if there is a difference.
It's been torture, to say the least.
After a frantic bout of continuously being pulled from slumber, and the tight feeling of suffocation in my bones and insides (that's the best way to describe it), I remembered I had this cream (thanks mom!) and eagerly slathered it all over my legs and arms.
I hope it goes away so soon.
Truthfully, it is dreadful.
I'm still supremely exhausted and feeling really ill. Oh winter, how I love you, but Fibromyalgia certainly does not.
On a random note, I've decided to take a break from a couple of social media sites, and from reading particular blogs. I am hesitant to post that information here, but I feel it will help me with accountability. I'm not going to be gone long, and not from every site, but there are a few places in the online world that have been hindering me as of late. This is not a new struggle, but I know that I need some time away to be with God in a deeper way and to stop feeding my mind and spirit with all of the good and bad things available online. Last night I was praying about how much time to fast from these sites and I kept coming back to 7 days. I opened my Bible and what do you know? My eyes fell on to these verses about healing, Leprosy (just the other day I was musing about how Fibro seems like the modern day Leprosy... except instead of the nerves not working, we struggle with overactive nerves), and about 7 days of quarantine.
I hear you, God. I hear you.
I believe I actually gasped out loud in delight. I love, love, love how He never fails to surprise me.
So 7 days, starting today.
I won't publicly announce which sites, because I believe that is between me and God. But it's happening.
;)
I've decided to up from two pills a day to three, just to see if there is a difference.
It's been torture, to say the least.
After a frantic bout of continuously being pulled from slumber, and the tight feeling of suffocation in my bones and insides (that's the best way to describe it), I remembered I had this cream (thanks mom!) and eagerly slathered it all over my legs and arms.
I hope it goes away so soon.
Truthfully, it is dreadful.
I'm still supremely exhausted and feeling really ill. Oh winter, how I love you, but Fibromyalgia certainly does not.
On a random note, I've decided to take a break from a couple of social media sites, and from reading particular blogs. I am hesitant to post that information here, but I feel it will help me with accountability. I'm not going to be gone long, and not from every site, but there are a few places in the online world that have been hindering me as of late. This is not a new struggle, but I know that I need some time away to be with God in a deeper way and to stop feeding my mind and spirit with all of the good and bad things available online. Last night I was praying about how much time to fast from these sites and I kept coming back to 7 days. I opened my Bible and what do you know? My eyes fell on to these verses about healing, Leprosy (just the other day I was musing about how Fibro seems like the modern day Leprosy... except instead of the nerves not working, we struggle with overactive nerves), and about 7 days of quarantine.
I hear you, God. I hear you.
I believe I actually gasped out loud in delight. I love, love, love how He never fails to surprise me.
So 7 days, starting today.
I won't publicly announce which sites, because I believe that is between me and God. But it's happening.
;)
Sunday, January 13, 2013
Candida
Candida die off is hard core.
Every time I go through this I remember how horrible it is.
The scale is 8lbs. down in the week since I have stopped consuming sugar and snacking much. That is a great relief. My insides no longer feel disgustingly full and I can see & feel the changes in my figure and gut. My clothes are fitting better and I am encouraged to keep going, but man, this is severe.
On top of the usual CFS/Fibro I am experiencing the die off symptoms in spades. My exhaustion is paramount and I can hardly stand ANY flicker of the television or movement. More so than usual. I am feeling much more sluggish and drained, dehydrated, achy, and got a random canker sore the other day, which I had no idea was a symptom of die off. Plus my irritability has been full force.
This is a clanging reminder of how serious systematic candida is and how I must be diligent about not consuming sugar. I used to do so well, until I moved and now it will go well for weeks and I will innocently have a piece of chocolate or something and suddenly my body is craving sweets and starches like there is no tomorrow. When the candida is fed it gets greedy.
I am in a new kind of misery. I mentioned a few symptoms but there are a lot more. It's grueling. Blah. I pray this time I would remember how it feels so I don't have to repeat the process.
One of the ways to minimize symptoms is to make sure to rest. Huh. Go figure. THE thing I am supposed to do anyway, per God and per Fibro.
As yucky as this feels I am also quite tickled at the fact that when we ask God to help us obey what He has asked He sure does work all things in and around us to make sure we get there.
Rest. Rest. Rest. Rest. Rest.
Every time I go through this I remember how horrible it is.
The scale is 8lbs. down in the week since I have stopped consuming sugar and snacking much. That is a great relief. My insides no longer feel disgustingly full and I can see & feel the changes in my figure and gut. My clothes are fitting better and I am encouraged to keep going, but man, this is severe.
On top of the usual CFS/Fibro I am experiencing the die off symptoms in spades. My exhaustion is paramount and I can hardly stand ANY flicker of the television or movement. More so than usual. I am feeling much more sluggish and drained, dehydrated, achy, and got a random canker sore the other day, which I had no idea was a symptom of die off. Plus my irritability has been full force.
This is a clanging reminder of how serious systematic candida is and how I must be diligent about not consuming sugar. I used to do so well, until I moved and now it will go well for weeks and I will innocently have a piece of chocolate or something and suddenly my body is craving sweets and starches like there is no tomorrow. When the candida is fed it gets greedy.
I am in a new kind of misery. I mentioned a few symptoms but there are a lot more. It's grueling. Blah. I pray this time I would remember how it feels so I don't have to repeat the process.
One of the ways to minimize symptoms is to make sure to rest. Huh. Go figure. THE thing I am supposed to do anyway, per God and per Fibro.
As yucky as this feels I am also quite tickled at the fact that when we ask God to help us obey what He has asked He sure does work all things in and around us to make sure we get there.
Rest. Rest. Rest. Rest. Rest.
Sunday
After weeks of EXTREME exhaustion & pain unrelenting in the slightest, I woke up today with a very precious, tiny canister of energy. I've already made the bed and I can feel the strength sapping fast. This is the blessing and curse moment the person with Fibromyalgia waits for. The little bit of normalcy (and not even!) and the quick draw as the body sucks out with alarming fever.
Already the birds outside that just a moment ago sang so gaily are now piercing my ear drums. The water running in the kitchen loud as a roar. The person in the bathroom, separated by one thin wall, constantly clearing their throat, flushing the toilet, my immediate enemy.
It's such a delicate life to lead.
Already my body is settling back into a state of exhaustion, wherein keeping the eyes open is a chore. I have been awake for less than an hour and already I am drained for the entire day.
Still, I am grateful that for a few brief minutes it was a pleasure to hear the birds sing.
God has been speaking to me about this call to rest. His command for me this year, His desire to have me all to Himself. As I wrote in my journal last night I was brought to the startling discovery that of course (of course!) as God ushers me to choose Him over all things, suddenly things will start competing for my time and energy more than ever! And they won't be half appealing or simply satisfactory. No way. They will be tailored to my desires, because the devil knows what I like. And they will even be good things, like a conference or a trip or new books or new worship CDs or magazines. All of it waiting to steal me away from the rest God is telling me I NEED.
So I have to choose. I have to stop. I have to realign my priorities, my heart. Get back to my first love and settle in for as long as this season shall be. Oh, it is hard!
The truest friends of Fibromyalgia are silence and sleep. All else is a madhouse of sorts.
We pray that you'll have the strength to stick it out over the long haul - not the grim strength of gritting your teeth but the glory-strength God gives. It is strength that endures the unendurable and spills over into joy,
Colossians 1:11
"Hang in there. It is astonishing how short a time it can take for very wonderful things to happen."- Frances Hodgson Burnett
“My face set to a grim and determined expression. I speak in all modesty as I say this, but I discovered at that moment that I have a fierce will to live. It's not something evident, in my experience. Some of us give up on life with only a resigned sigh. Others fight a little, then lose hope. Still others - and I am one of those - never give up. We fight and fight and fight. We fight no matter the cost of battle, the losses we take, the improbability of success. We fight to the every end. It's not a question of courage. It's something constitutional, an inability to let go. It may be nothing more than life-hungry stupidity.”
-Yann Martel
"The worst pair of opposites is boredom and terror. Sometimes your life is a pendulum swing from one to the other. The sea is without a wrinkle. There is not a whisper of wind. The hours last forever. You are so bored you sink into a state of apathy close to a coma. Then the sea becomes rough and your emotions are whipped into a frenzy. Yet even these two opposites do not remain distinct. In your boredom there are elements of terror: you break down into tears; you are filled with dread; you scream; you deliberately hurt yourself. And in the grip of terror – the worst storm – you yet feel boredom, a deep weariness with it all.
Only death consistently excites your emotions, whether contemplating it when life is safe and stale, or fleeing it when life is threatened and precious.
Life on a boat isn’t much of a life. It is like an end game in chess, a game with few pieces. The elements couldn’t be more simple, nor the stakes higher. Physically it is extraordinarily arduous, and morally it is killing. You must make adjustments if you want to survive. Much becomes expendable. You get your happiness when you can. You reach a point where you’re at the bottom of hell, yet you have your arms crossed and a smile on your face, and you feel you’re the luckiest person on earth. Why? Because at your feet you have a tiny dead fish."
-Yann Martel
Already the birds outside that just a moment ago sang so gaily are now piercing my ear drums. The water running in the kitchen loud as a roar. The person in the bathroom, separated by one thin wall, constantly clearing their throat, flushing the toilet, my immediate enemy.
It's such a delicate life to lead.
Already my body is settling back into a state of exhaustion, wherein keeping the eyes open is a chore. I have been awake for less than an hour and already I am drained for the entire day.
Still, I am grateful that for a few brief minutes it was a pleasure to hear the birds sing.
God has been speaking to me about this call to rest. His command for me this year, His desire to have me all to Himself. As I wrote in my journal last night I was brought to the startling discovery that of course (of course!) as God ushers me to choose Him over all things, suddenly things will start competing for my time and energy more than ever! And they won't be half appealing or simply satisfactory. No way. They will be tailored to my desires, because the devil knows what I like. And they will even be good things, like a conference or a trip or new books or new worship CDs or magazines. All of it waiting to steal me away from the rest God is telling me I NEED.
So I have to choose. I have to stop. I have to realign my priorities, my heart. Get back to my first love and settle in for as long as this season shall be. Oh, it is hard!
The truest friends of Fibromyalgia are silence and sleep. All else is a madhouse of sorts.
We pray that you'll have the strength to stick it out over the long haul - not the grim strength of gritting your teeth but the glory-strength God gives. It is strength that endures the unendurable and spills over into joy,
Colossians 1:11
"Hang in there. It is astonishing how short a time it can take for very wonderful things to happen."- Frances Hodgson Burnett
“My face set to a grim and determined expression. I speak in all modesty as I say this, but I discovered at that moment that I have a fierce will to live. It's not something evident, in my experience. Some of us give up on life with only a resigned sigh. Others fight a little, then lose hope. Still others - and I am one of those - never give up. We fight and fight and fight. We fight no matter the cost of battle, the losses we take, the improbability of success. We fight to the every end. It's not a question of courage. It's something constitutional, an inability to let go. It may be nothing more than life-hungry stupidity.”
-Yann Martel
"The worst pair of opposites is boredom and terror. Sometimes your life is a pendulum swing from one to the other. The sea is without a wrinkle. There is not a whisper of wind. The hours last forever. You are so bored you sink into a state of apathy close to a coma. Then the sea becomes rough and your emotions are whipped into a frenzy. Yet even these two opposites do not remain distinct. In your boredom there are elements of terror: you break down into tears; you are filled with dread; you scream; you deliberately hurt yourself. And in the grip of terror – the worst storm – you yet feel boredom, a deep weariness with it all.
Only death consistently excites your emotions, whether contemplating it when life is safe and stale, or fleeing it when life is threatened and precious.
Life on a boat isn’t much of a life. It is like an end game in chess, a game with few pieces. The elements couldn’t be more simple, nor the stakes higher. Physically it is extraordinarily arduous, and morally it is killing. You must make adjustments if you want to survive. Much becomes expendable. You get your happiness when you can. You reach a point where you’re at the bottom of hell, yet you have your arms crossed and a smile on your face, and you feel you’re the luckiest person on earth. Why? Because at your feet you have a tiny dead fish."
-Yann Martel
Thursday, January 10, 2013
Choosing Rest
*Rest: 1: sleep 2: freedom from work or activity 3: state of inactivity 4: something used as a support~ 1: get rest 2: cease action or motion 3: give rest to 4: sit or lie fixed or supported 5: depend
Tonight I got all dressed to go to church (I even wore some cute heart earrings)despite the fatigue pressing in. It was a sort of defiant decision to go and as I got ready to leave, I lay back on the bed and closed my eyes. I was exhausted and my limbs were like dead weights. It felt good to actually lie down for once, and in that moment I realized how utterly selfish it would be for me to get in a car and drive anywhere in this state of supreme debilitation. I could fall asleep at the wheel or freak out from the lights so bright, or hit someone because I was too tired to take note of my surroundings.
I thought of how God is calling me to a season of rest. REAL rest. I thought about how we all have different seasons and struggles and how my particular struggle has consistently been to stop. To just be still. It was like that when I was a nanny, when I served in ministries, when I didn't have Fibromyalgia, and surprisingly, it's even worse WITH Fibromyalgia. I tend to push back when my body begs me to rest.
Every year Abba gives me a theme. It started in 2005 and it will come as a whisper. Sometimes I have absolutely no idea what it means until way later, such as one year themed: "open your eyes" or another: "letting go." This year it's: "learning how to rest." Pretty clear, right? You would think so, but my heart is stubborn. Anyway, in that moment, laying on the bed, I knew I had to choose. Myself or God. That may sound funny, but going to church tonight would have been choosing myself. To religious eyes, to the standard of Christian culture today, not going to church every week is taboo. It signifies that one is not "as" spiritual or that they are "lost" or somehow not as in love with Jesus as Delia-Do-Everything is. In layman's terms- it's judgmental. I've been that person. Intentionally or not, I think most Christians have. If last year was accepting this sickness, now is the time that I learn what it means to be still. Fighting against my body tonight would have been feeding my ego. The part of me that is bound and determined to be Janet without Fibromyalgia. That is always my first inclination, and thus, choosing to stay home (for me) is the harder choice. The most spiritual thing I could do is stay home. Imagine that!
I miss corporately worshiping. I miss constant, face to face fellowship (but oh, how I am grateful for technology that enables fellowship from afar). I miss being active and serving. But all of that, it's about me, not God. Because God is speaking to me and I'm not listening. I'm like a child plugging my ears with my fingers. Choosing myself, choosing my way over His.
I don't cease. On my very bad days I still force myself to do laundry or create small projects. Though I have come a long way from before, I still struggle with accepting my limitations. I've never been idle. To me that is a waste of time. Hence, my challenge. I'm not boasting in this, I'm saying this is NOT what God calls me to.
“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."
Matthew 11:28-29
Psalm 61:1
“Hear my cry, O God; listen to my prayer. From the ends of the earth I call to you, I call as my heart grows faint; lead me to the rock that is higher than I. For you have been my refuge, a strong tower against the foe. I long to dwell in your tent forever and take refuge in the shelter of your wings.”
Psalm 62:1-2
“My soul finds rest in God alone; my salvation comes from him. He alone is my rock and my salvation; he is my fortress, I will never be shaken.”
Isaiah 40:28- 31
“Do you not know? Have you not heard? The Lord is the everlasting God, the Creator of the ends of the earth. He will not grow tired or weary, and his understanding no one can fathom. He gives strength to the weary and increases the power of the weak. Even youths grow tired and weary, and young men stumble and fall; but those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.”
Psalm 23:2
He lets me rest in green meadows; he leads me beside peaceful streams.
There are moments where all activity must cease and a heart must be still before the Lord. I'm not just talking about prayer. I'm talking about stillness. With NOTHING to distract. No petitions, no words, just the solitude and surrender that comes with bowing before our God. No television, no books, no internet, no music. Just... silence.
Lately my head had been so full of fog. It feels like a bunch a cotton for brains. I try to read and it's difficult. I spend entirely too much time on my iPhone. I don't know what rest looks like for my life yet. I have asked God to lead me down that path and to give me the courage and strength to abide in it. To choose rest feels like gritting my teeth. It feels like defeat. Like I am letting my sickness win. Tonight felt like a big accomplishment.
It's mind boggling to me how we can act so beastly sometimes and yet He still blesses, still loves, and not only loves, but loves HARD. Earlier I had a little tantrum. It happens sometimes with Fibro. It happens to me way less frequently then it used to, but occasionally I will get really hot inside, feel like I can't stand being in this body any longer, and I will snap. It makes me feel embarrassed and guilty and ashamed. I don't like it one little bit, but it happens. Being in pain 24/7, 365 days a year will do that to a person. ;) So I'll feel like a monster, and then God comes quickly to forgive and restore, and His affection is so LOUD that I can only be grateful. So grateful.
Today, after all was said and done, I was checking Instagram and saw that some of my favorite music makers (worship mothers and fathers) will be coming to Wilmington in March. This church is in California, and they are coming to NC?! Let alone my very favorite town in the entire world?! God has healed my heart a few times in Wilmington. Kayaking* for one.
*This was one of the most peaceful experiences of my life. There had been a great deal of strife only the night before and the decision to kayak was random. I just knew I wanted to see Dawson Leery's house and getting there by kayak was the only option. I had never kayaked before and it was hard. I remember the sun beating down furiously. I was not dressed for the occasion, and I was pedaling with all of my might. Halfway there I learned from the guide that it was an intermediate course and I was full of regret for signing up. Surely I would not make it. But suddenly we were there, and it was so worth it. I felt so excited! On the way back it was quiet. The guide and I were silent and I listened to the water lapping against the kayak, saw the blue sky, and heard the birds sing around us. It was beautiful. It was one of the best days of my life.*
Anyway, how random is that?! ONLY God. People may scoff and claim coincidence, but I know... I know His love. I know He is absolutely in the details and the fact that I may have an opportunity to worship with some amazingly free and furious worshipers... in my favorite place... that is not coincidence, that is a loving, beautiful, oh so very attentive God.
And not only that! Oh no, there's more. The perfect devotional today.
How many times have I lamented that I feel like a prisoner? And today I was reminded again of those who have gone before me, and I know that I know that I know that the God of the universe is with me in my "prison." Not fashioned with cells and bars, but a prison made up of sickness and isolation and despair.
He meets me here and reminds me that He's got this. HE HAS GOT THIS. And I cry in release and in joy because this kind of love is insane! It's a fire! It's a river! It's unicorns and babies laughing and flowers everywhere. It's God. In my heart. In my soul. In my spirit. In my very being.
So tonight I chose. Church would have been fun and good and well. I miss it so. But this silence... this rush of God's tangible love-
I feel Him here and He says, "be still & wait,"
and so I will.
Tonight I got all dressed to go to church (I even wore some cute heart earrings)despite the fatigue pressing in. It was a sort of defiant decision to go and as I got ready to leave, I lay back on the bed and closed my eyes. I was exhausted and my limbs were like dead weights. It felt good to actually lie down for once, and in that moment I realized how utterly selfish it would be for me to get in a car and drive anywhere in this state of supreme debilitation. I could fall asleep at the wheel or freak out from the lights so bright, or hit someone because I was too tired to take note of my surroundings.
I thought of how God is calling me to a season of rest. REAL rest. I thought about how we all have different seasons and struggles and how my particular struggle has consistently been to stop. To just be still. It was like that when I was a nanny, when I served in ministries, when I didn't have Fibromyalgia, and surprisingly, it's even worse WITH Fibromyalgia. I tend to push back when my body begs me to rest.
Every year Abba gives me a theme. It started in 2005 and it will come as a whisper. Sometimes I have absolutely no idea what it means until way later, such as one year themed: "open your eyes" or another: "letting go." This year it's: "learning how to rest." Pretty clear, right? You would think so, but my heart is stubborn. Anyway, in that moment, laying on the bed, I knew I had to choose. Myself or God. That may sound funny, but going to church tonight would have been choosing myself. To religious eyes, to the standard of Christian culture today, not going to church every week is taboo. It signifies that one is not "as" spiritual or that they are "lost" or somehow not as in love with Jesus as Delia-Do-Everything is. In layman's terms- it's judgmental. I've been that person. Intentionally or not, I think most Christians have. If last year was accepting this sickness, now is the time that I learn what it means to be still. Fighting against my body tonight would have been feeding my ego. The part of me that is bound and determined to be Janet without Fibromyalgia. That is always my first inclination, and thus, choosing to stay home (for me) is the harder choice. The most spiritual thing I could do is stay home. Imagine that!
I miss corporately worshiping. I miss constant, face to face fellowship (but oh, how I am grateful for technology that enables fellowship from afar). I miss being active and serving. But all of that, it's about me, not God. Because God is speaking to me and I'm not listening. I'm like a child plugging my ears with my fingers. Choosing myself, choosing my way over His.
I don't cease. On my very bad days I still force myself to do laundry or create small projects. Though I have come a long way from before, I still struggle with accepting my limitations. I've never been idle. To me that is a waste of time. Hence, my challenge. I'm not boasting in this, I'm saying this is NOT what God calls me to.
“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."
Matthew 11:28-29
Psalm 61:1
“Hear my cry, O God; listen to my prayer. From the ends of the earth I call to you, I call as my heart grows faint; lead me to the rock that is higher than I. For you have been my refuge, a strong tower against the foe. I long to dwell in your tent forever and take refuge in the shelter of your wings.”
Psalm 62:1-2
“My soul finds rest in God alone; my salvation comes from him. He alone is my rock and my salvation; he is my fortress, I will never be shaken.”
Isaiah 40:28- 31
“Do you not know? Have you not heard? The Lord is the everlasting God, the Creator of the ends of the earth. He will not grow tired or weary, and his understanding no one can fathom. He gives strength to the weary and increases the power of the weak. Even youths grow tired and weary, and young men stumble and fall; but those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.”
Psalm 23:2
He lets me rest in green meadows; he leads me beside peaceful streams.
There are moments where all activity must cease and a heart must be still before the Lord. I'm not just talking about prayer. I'm talking about stillness. With NOTHING to distract. No petitions, no words, just the solitude and surrender that comes with bowing before our God. No television, no books, no internet, no music. Just... silence.
Lately my head had been so full of fog. It feels like a bunch a cotton for brains. I try to read and it's difficult. I spend entirely too much time on my iPhone. I don't know what rest looks like for my life yet. I have asked God to lead me down that path and to give me the courage and strength to abide in it. To choose rest feels like gritting my teeth. It feels like defeat. Like I am letting my sickness win. Tonight felt like a big accomplishment.
It's mind boggling to me how we can act so beastly sometimes and yet He still blesses, still loves, and not only loves, but loves HARD. Earlier I had a little tantrum. It happens sometimes with Fibro. It happens to me way less frequently then it used to, but occasionally I will get really hot inside, feel like I can't stand being in this body any longer, and I will snap. It makes me feel embarrassed and guilty and ashamed. I don't like it one little bit, but it happens. Being in pain 24/7, 365 days a year will do that to a person. ;) So I'll feel like a monster, and then God comes quickly to forgive and restore, and His affection is so LOUD that I can only be grateful. So grateful.
Today, after all was said and done, I was checking Instagram and saw that some of my favorite music makers (worship mothers and fathers) will be coming to Wilmington in March. This church is in California, and they are coming to NC?! Let alone my very favorite town in the entire world?! God has healed my heart a few times in Wilmington. Kayaking* for one.
*This was one of the most peaceful experiences of my life. There had been a great deal of strife only the night before and the decision to kayak was random. I just knew I wanted to see Dawson Leery's house and getting there by kayak was the only option. I had never kayaked before and it was hard. I remember the sun beating down furiously. I was not dressed for the occasion, and I was pedaling with all of my might. Halfway there I learned from the guide that it was an intermediate course and I was full of regret for signing up. Surely I would not make it. But suddenly we were there, and it was so worth it. I felt so excited! On the way back it was quiet. The guide and I were silent and I listened to the water lapping against the kayak, saw the blue sky, and heard the birds sing around us. It was beautiful. It was one of the best days of my life.*
Anyway, how random is that?! ONLY God. People may scoff and claim coincidence, but I know... I know His love. I know He is absolutely in the details and the fact that I may have an opportunity to worship with some amazingly free and furious worshipers... in my favorite place... that is not coincidence, that is a loving, beautiful, oh so very attentive God.
And not only that! Oh no, there's more. The perfect devotional today.
How many times have I lamented that I feel like a prisoner? And today I was reminded again of those who have gone before me, and I know that I know that I know that the God of the universe is with me in my "prison." Not fashioned with cells and bars, but a prison made up of sickness and isolation and despair.
He meets me here and reminds me that He's got this. HE HAS GOT THIS. And I cry in release and in joy because this kind of love is insane! It's a fire! It's a river! It's unicorns and babies laughing and flowers everywhere. It's God. In my heart. In my soul. In my spirit. In my very being.
So tonight I chose. Church would have been fun and good and well. I miss it so. But this silence... this rush of God's tangible love-
I feel Him here and He says, "be still & wait,"
and so I will.
Peeved
Fakers piss me off. I abhor lies in general, so that is half of my displeasure & I don't know if it can be adequately expressed but I shall try. It is like they claim the hardship of this illness without going through the trauma of it. They rob us of our grief and sorrow and anger by trivializing the whole blasted thing.
Because sickness is not some polite, tidy thing. It cannot be compartmentalized. It IS. We do the best we can but it still invades our laughter, our thoughts, our ability to function. Even the most positive of souls is affected.
This... These long stretches of SEVERE (not to be mistaken for the regular, daily pain and fatigue) exhaustion & crushing pain, are no joke. These days are maddening. It is if our very bones are weary and crying out for relief. Every sound is a slam to the system. So to have people out there who claim it, but still do everything they want ALL of the time, saying it is possible because they "won't let fibro get me down" is so dismissive of the fact that it is an actual illness.
It's partnering with those scoffers who think yoga or diet will heal or give us super powers.
It says that the doctors who mistreat us are justified, and that the "mind over matter" comments have merit. It says that we (the ACTUAL sufferers) are responsible for our illness. Responsible to educate ourselves about it? Yes. Responsible to eat properly for our unique digestive systems? Yes. Responsible for exercise when possible and doing what we can to have a functioning life despite the illness? Oh yes, yes, yes.
But responsible to cure ourselves with tai chi? To push past (For the record, we do this on the daily as we make small talk, sit at the dinner table, celebrate birthdays, take showers, do laundry... Ya know, LIFE.) our constantly overloaded, freaked out nervous system? No.
Responsible for being sick in the first place? Oh, NO! We did not ask for this. We do not want it. In fact, a daily plea is to wake up without it! This life sucking villain who never leaves our side.
Fibromyalgia is not some delicate, polite little disease. It's maddening. It's all encompassing. Sight, sound, touch, taste, and smell. Throw in Chronic Fatigue & we've got ourselves a party. We must pick and choose. A trip to the movies sure is fun but it also collects huge afterward. Going to church? All those lights and motion and socializing and music? It's a Fibro nightmare. Best to watch online services.
Sure, some people with Fibro can work. A limited few. Sure, some do all the things they used to do. That's super for them, but the majority? Well, we are the ones who have tried in vain to "push past" sickness. The ones who have fought (or still fight) anger, depression, denial. We have bargained and pleaded with God. We have faced our ugliest, darkest selves and have batches of acceptance, only to cycle through the darkness again.
We try different medications. We rejoice with one another at the accomplishments... A book published, a trip taken, a successful pregnancy. We cry over each others losses. We protect one another, because we know in this world we are disbelieved, belittled, copied (as if sickness is glorifying!), mocked, written off. We face our inner demons and we cry out to the God who created our bodies and we ask why and we wish not to exist, just as we laugh, find joy in unexpected places, and love in ways we never thought we could. Through our pain comes the treasure of beauty from ashes.
Fibromyalgia is not in our heads. It is not something one can escape. It is not an illness that should be copied because it sounds good on paper.
That's the trouble. Anyone can claim this disease. It's freaking invisible!
But for those of us in the trenches, we can spot another sufferer plain as day, just as a Christ follower can step onto an elevator and know a fellow brother just by sight. This means we generally can spot the phonies... There's only so much that can be faked. The pain & reality of our condition makes itself known quite quickly in mixed company. The blanket list of aches and pains splayed all over the web or those annoying, insensitive, unrealistic Lyrica commercials does not even depict a fraction of the reality of Fibromyalgia. Truth. So, saying you are in pain will only last so long in the presence of a true sufferer. You can claim it, but if it's true, it's not really as invisible as the world thinks. Those who are with us every day know what I'm talking about. And let's not even get started on other sufferers who compete with one another as to who has it worse. It's all bad, friends! Let's join together, not try to win for who is the sickest! Good grief! As you can see, dear reader, I am not feeling so sunshine-y today. This must be said though & I make no apology.
To my friends alongside me in this battle: I applaud you! I pray your strength and dignity and color will abound and that I might have even a shred of your bravery and character. Thank you for being my teachers in this fight we endure. I am sincerely grateful for you.
And to those in my sphere who love me despite my illness, who can see beyond a tantrum or a bad day (or weeks), BLESS you. You have been most merciful and I adore you for loving me.
A million thank yous will never be enough.
Recently a friend shared some new information about Fibromyalgia on Facebook. It gives more weight to the fact that this is autoimmune. Take a peek:
http://www.fmnetnews.com/free-articles/article-samples/why-head-to-toe-pain
Because sickness is not some polite, tidy thing. It cannot be compartmentalized. It IS. We do the best we can but it still invades our laughter, our thoughts, our ability to function. Even the most positive of souls is affected.
This... These long stretches of SEVERE (not to be mistaken for the regular, daily pain and fatigue) exhaustion & crushing pain, are no joke. These days are maddening. It is if our very bones are weary and crying out for relief. Every sound is a slam to the system. So to have people out there who claim it, but still do everything they want ALL of the time, saying it is possible because they "won't let fibro get me down" is so dismissive of the fact that it is an actual illness.
It's partnering with those scoffers who think yoga or diet will heal or give us super powers.
It says that the doctors who mistreat us are justified, and that the "mind over matter" comments have merit. It says that we (the ACTUAL sufferers) are responsible for our illness. Responsible to educate ourselves about it? Yes. Responsible to eat properly for our unique digestive systems? Yes. Responsible for exercise when possible and doing what we can to have a functioning life despite the illness? Oh yes, yes, yes.
But responsible to cure ourselves with tai chi? To push past (For the record, we do this on the daily as we make small talk, sit at the dinner table, celebrate birthdays, take showers, do laundry... Ya know, LIFE.) our constantly overloaded, freaked out nervous system? No.
Responsible for being sick in the first place? Oh, NO! We did not ask for this. We do not want it. In fact, a daily plea is to wake up without it! This life sucking villain who never leaves our side.
Fibromyalgia is not some delicate, polite little disease. It's maddening. It's all encompassing. Sight, sound, touch, taste, and smell. Throw in Chronic Fatigue & we've got ourselves a party. We must pick and choose. A trip to the movies sure is fun but it also collects huge afterward. Going to church? All those lights and motion and socializing and music? It's a Fibro nightmare. Best to watch online services.
Sure, some people with Fibro can work. A limited few. Sure, some do all the things they used to do. That's super for them, but the majority? Well, we are the ones who have tried in vain to "push past" sickness. The ones who have fought (or still fight) anger, depression, denial. We have bargained and pleaded with God. We have faced our ugliest, darkest selves and have batches of acceptance, only to cycle through the darkness again.
We try different medications. We rejoice with one another at the accomplishments... A book published, a trip taken, a successful pregnancy. We cry over each others losses. We protect one another, because we know in this world we are disbelieved, belittled, copied (as if sickness is glorifying!), mocked, written off. We face our inner demons and we cry out to the God who created our bodies and we ask why and we wish not to exist, just as we laugh, find joy in unexpected places, and love in ways we never thought we could. Through our pain comes the treasure of beauty from ashes.
Fibromyalgia is not in our heads. It is not something one can escape. It is not an illness that should be copied because it sounds good on paper.
That's the trouble. Anyone can claim this disease. It's freaking invisible!
But for those of us in the trenches, we can spot another sufferer plain as day, just as a Christ follower can step onto an elevator and know a fellow brother just by sight. This means we generally can spot the phonies... There's only so much that can be faked. The pain & reality of our condition makes itself known quite quickly in mixed company. The blanket list of aches and pains splayed all over the web or those annoying, insensitive, unrealistic Lyrica commercials does not even depict a fraction of the reality of Fibromyalgia. Truth. So, saying you are in pain will only last so long in the presence of a true sufferer. You can claim it, but if it's true, it's not really as invisible as the world thinks. Those who are with us every day know what I'm talking about. And let's not even get started on other sufferers who compete with one another as to who has it worse. It's all bad, friends! Let's join together, not try to win for who is the sickest! Good grief! As you can see, dear reader, I am not feeling so sunshine-y today. This must be said though & I make no apology.
To my friends alongside me in this battle: I applaud you! I pray your strength and dignity and color will abound and that I might have even a shred of your bravery and character. Thank you for being my teachers in this fight we endure. I am sincerely grateful for you.
And to those in my sphere who love me despite my illness, who can see beyond a tantrum or a bad day (or weeks), BLESS you. You have been most merciful and I adore you for loving me.
A million thank yous will never be enough.
Recently a friend shared some new information about Fibromyalgia on Facebook. It gives more weight to the fact that this is autoimmune. Take a peek:
http://www.fmnetnews.com/free-articles/article-samples/why-head-to-toe-pain
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