These are some photos I've seen recently on various social media sites & they all have got me thinking, or praying, or smirking in agreement.
Fibromyalgia is a moody booger, and with these returning migraines comes dizziness, mood swings, and irritability (among other things). It's all I can stand to be around even one other human being, let alone several at a time.
I'm so sick of it. Sick of sickness. Sick of the fast sinking feeling that comes over me when I am around motion, conversation, trying in vain to ignore pain, pain everywhere, every second of every day.
It's exhausting, and piled on top of literal sleepy time exhaustion, it's just too much.
So I feverishly paw through scripture, clinging to words, underlining, straining forward even when I don't feel I can stand even one more moment like this, ONLY because God carries me through each of those grueling minutes.
When I say that I am not trying to sound oh so spiritual. I mean to say, very literally, that I WOULD give up if not for God. I do not have the strength to endure Fibromyalgia without Jesus. True story. Probably the truest story I have ever told in my life. Perhaps there are some who power on through without Him, but I am
not one of those people. I have wanted this to be over... Not life exactly. I've not been suicidal, but I could be if I didn't know that God is with me. It's that brutal. I've begged to die sometimes. I've agonized and lamented and pleaded to be free from this life of severe limitation & forever sickness. It's not for the faint of heart. Or perhaps it is, and in that faint, bleary, I just want to give up, that's when God steps in. The cliche Footprints saying hung on walls and plastered on journals, and calendars everywhere.
He carries me.
Every single time I want to close my eyes, fade away, not feel this burden in my very skin & bone, and yes, even the soul after a while (the human spirit can only sustain so much)- that is when I am carried.
It comes as whispers to my heart, shared promises in the Bible, silly gifs on websites, confidences with soul sisters, flowers growing among weeds, the way the fading sunlight hits the trees...
Carried, every single day.
I used to think I was so strong physically. I lifted heavy things, I worked hard from the age of 16. I endured a miscarriage, a near cervical cancer scare, and many other hardships as a young woman. But it took this monster, this Fibromyalgia hell, to show me that my true strength comes only from the source of all of my life's breath.
Jesus.
Alone I fight for awhile. I breathe hard and deep and flail around, but it is only when I draw from Him, put my thirsty limbs and heart and mouth on refreshing holy water, and gulp deep, that I understand the depth and reality of genuine strength.
And that is what gets me out of bed every single day. Gets me into the shower where the hot water wakes me alive again.
I am lucky.
It would be very easy to just drown in this miserable prison. And sometimes I wallow. Sometimes I cry and have an attitude and hate my limitations. That's real. That's sickness.
So, I am much more grateful on the days where living comes just a bit easier.
And I close my so tired eyes, and I beg for this thirst to be quenched daily, that I won't run dry, that I won't stop seeking tomorrow.
And He comes to me, tenderly holds His cup of life to my sagging spirit, and urges: "drink."
And so I do.
Thursday, February 21, 2013
Sunday, February 17, 2013
Let it Snow!
It's been a bear of a time (every time I use that phrase I think of Dan Sierra) lately with Fibro. Then again, when is it ever not a bear?
I've felt particularly grumpy about it. More itchy, more sleepy, more achy, more headache-y, more agitated to be in this vessel that is literally never without pain. Stabbing or aching or spasming or bruise-y or invisible sunburn-y. All the variations, each day a surprise of what hurts and how is my body going to attack itself today (they-whoever they are- need to realize and declare that Fibro IS autoimmune already!), and how exhausted am I going to be. Fibro doesn't care if I want to catch a movie, or ride my bike. It's not like the normals- they get sick, rest, pop back the NyQuil, put life on pause right quick until its back to the regular. Nope, with the Fibro life you've got to do the laundry, ride the bike, feed yourself, shower, get the groceries, and basically do what ya gotta do anyway. Of course rest is essential, and we learn to say no, and the guilt eases after a good long while, but we still have to function in society even though we wish we could just live in a sound proof bubble already!
It would definitely be easier that way. Personally I have been having an increasingly more difficult time being around other humans. More than ever. It's always been hard, but now it is downright miserable. My lifestyle is already extremely modified since I moved to NC, but as the months race by, Fibro intensifies. Sometimes I have no idea how I can keep living this way. We all make adjustments with this crazy sickness, and a lot of times it feels downright impossible & possibly like we are going a bit mad. Even watching television is becoming a major deal. The commercials have been muted for the last few years, but now sometimes I cannot even handle it at all.
It's a strange way to live. Lately my eyes have been super irritated. Itchy, aggravated. I can wear my contacts for brief snippets before the eyeballs beg for relief, even wearing glasses is uncomfortable. The migraines have been making their cameos.
Like I said, it's been more brutal. I've been thinking about how my body is directly affected by everything that goes into it. Not merely food, but the pollution and toxins that get in by way of conversation, reading material, social media, movies, television. It all matters. So in that, I am trying to be more intentional about what is feeding my spirit. It's challenging. There sure are a lot of distractions, but with this Fibro life I don't have much of a choice. My body is in constant distress, and I want to do what I can to make sure my emotions are not in the same state of alarm. Of course, to be fair to myself, I must also hold firm to the knowledge that Fibro IS legitimate & sometimes I can make many efforts to stay "in the clear" and still not be feeling emotionally okay. It's incredibly difficult to stay optimistic and good natured with this kind of beast on your back all the time. We fight like the dickens to smile and think positively and look UP. Most people I encounter get a mad case of the grumpies when they are ill, so I think those of us with chronic illnesses do a darn fine job of enduring and thriving despite the tight grip of unceasing sickness hot on
our heels every minute of every single day.
I might sound crazy, but I am proud to be amongst this group of soldiers. These strong warriors who look sickness in the face, feel the hot, stinky hell fire breath of doom and torture (Chinese water torture has to be a sister to Fibro!) and still find time to laugh and read good books and share meal time with their families.
I'm not talking about those who pretend they are fine. Not talking about those who are unwilling to admit how hard this sickness is. I'm talking about my precious sister friends who KNOW how monstrous this lifestyle is, but who fight hard every day to live, despite how much it wants to tear us down, knees scrapping the pavement, palms bloody from the fall.
These are the people I jump to my feet for, hands slapping together in enthusiastic applause. You give me courage! You give me hope! You make me remember, when in the din of my own despair, that we can do this! We ARE doing this!
So I thank you, again.
During this time, when my body is the worst enemy it's ever been, when the cold air wreaks havoc every, EVERYwhere (truly we must be human barometers), when I feel I could literally slumber for whole days on end... I think of you, my spiffy, STRONG friends, and I gather strength from your stories, from your agonies texted and whispered and shared in slivers.
I remember, I am not alone, and I can do this, because YOU are, and we ARE, and we will.
No one understands our pain, even the darling ones who honestly, sincerely try. But they don't have to.
Because I understand, you understand, we understand, and one of these days, oh dear God please, one of these days, maybe there will be more answers, and perhaps even a cure, or at least a pill instead of dozens that don't really work anyway.
Here's to hope.
Love,
Janet
"I know, more surely than I know anything, that any pang of healing or forgiveness or goodness I have ever felt comes solely from the grace of God."
-Philip Yancey
I've felt particularly grumpy about it. More itchy, more sleepy, more achy, more headache-y, more agitated to be in this vessel that is literally never without pain. Stabbing or aching or spasming or bruise-y or invisible sunburn-y. All the variations, each day a surprise of what hurts and how is my body going to attack itself today (they-whoever they are- need to realize and declare that Fibro IS autoimmune already!), and how exhausted am I going to be. Fibro doesn't care if I want to catch a movie, or ride my bike. It's not like the normals- they get sick, rest, pop back the NyQuil, put life on pause right quick until its back to the regular. Nope, with the Fibro life you've got to do the laundry, ride the bike, feed yourself, shower, get the groceries, and basically do what ya gotta do anyway. Of course rest is essential, and we learn to say no, and the guilt eases after a good long while, but we still have to function in society even though we wish we could just live in a sound proof bubble already!
It would definitely be easier that way. Personally I have been having an increasingly more difficult time being around other humans. More than ever. It's always been hard, but now it is downright miserable. My lifestyle is already extremely modified since I moved to NC, but as the months race by, Fibro intensifies. Sometimes I have no idea how I can keep living this way. We all make adjustments with this crazy sickness, and a lot of times it feels downright impossible & possibly like we are going a bit mad. Even watching television is becoming a major deal. The commercials have been muted for the last few years, but now sometimes I cannot even handle it at all.
It's a strange way to live. Lately my eyes have been super irritated. Itchy, aggravated. I can wear my contacts for brief snippets before the eyeballs beg for relief, even wearing glasses is uncomfortable. The migraines have been making their cameos.
Like I said, it's been more brutal. I've been thinking about how my body is directly affected by everything that goes into it. Not merely food, but the pollution and toxins that get in by way of conversation, reading material, social media, movies, television. It all matters. So in that, I am trying to be more intentional about what is feeding my spirit. It's challenging. There sure are a lot of distractions, but with this Fibro life I don't have much of a choice. My body is in constant distress, and I want to do what I can to make sure my emotions are not in the same state of alarm. Of course, to be fair to myself, I must also hold firm to the knowledge that Fibro IS legitimate & sometimes I can make many efforts to stay "in the clear" and still not be feeling emotionally okay. It's incredibly difficult to stay optimistic and good natured with this kind of beast on your back all the time. We fight like the dickens to smile and think positively and look UP. Most people I encounter get a mad case of the grumpies when they are ill, so I think those of us with chronic illnesses do a darn fine job of enduring and thriving despite the tight grip of unceasing sickness hot on
our heels every minute of every single day.
I might sound crazy, but I am proud to be amongst this group of soldiers. These strong warriors who look sickness in the face, feel the hot, stinky hell fire breath of doom and torture (Chinese water torture has to be a sister to Fibro!) and still find time to laugh and read good books and share meal time with their families.
I'm not talking about those who pretend they are fine. Not talking about those who are unwilling to admit how hard this sickness is. I'm talking about my precious sister friends who KNOW how monstrous this lifestyle is, but who fight hard every day to live, despite how much it wants to tear us down, knees scrapping the pavement, palms bloody from the fall.
These are the people I jump to my feet for, hands slapping together in enthusiastic applause. You give me courage! You give me hope! You make me remember, when in the din of my own despair, that we can do this! We ARE doing this!
So I thank you, again.
During this time, when my body is the worst enemy it's ever been, when the cold air wreaks havoc every, EVERYwhere (truly we must be human barometers), when I feel I could literally slumber for whole days on end... I think of you, my spiffy, STRONG friends, and I gather strength from your stories, from your agonies texted and whispered and shared in slivers.
I remember, I am not alone, and I can do this, because YOU are, and we ARE, and we will.
No one understands our pain, even the darling ones who honestly, sincerely try. But they don't have to.
Because I understand, you understand, we understand, and one of these days, oh dear God please, one of these days, maybe there will be more answers, and perhaps even a cure, or at least a pill instead of dozens that don't really work anyway.
Here's to hope.
Love,
Janet
"I know, more surely than I know anything, that any pang of healing or forgiveness or goodness I have ever felt comes solely from the grace of God."
-Philip Yancey
Saturday, February 9, 2013
Choice
I've decided not to go to that worship night in Wilmington. I've known in my gut that it would be a bad choice to go but rebellion made me think it was an option. I COULD go but it's not in the best interest with Fibro.
I convinced myself it was going to be some polite little affair, but the reality is that it would be hundreds of people in one building, bright lights like a concert, and loud music. In this case choosing not to go takes more effort and strength (A reminded me). To drive 2 hours, go to a concert (cause lets not mince words, that's what it would be), stay overnight, and drive 2 hours home is not a smart choice.
I feel sad at realizing yet again another "loss" and thing that Fibro makes unenjoyable, but I feel kinda proud too.
It makes me feel like I'm taking care of myself better.
Most people without Fibro (and even some that do) would tell me it would be good to go. I agree. It really would. However, it is even better NOT to go. This shows that all of my self work and hard nights have transformed into my ability to recognize my very real sickness and limitations. It means I have reached a point where, yes, a part of me still rebels against the reality of having a Neuro-Immune illness, but I now grasp how vital it is to pay attention to what having Fibromyalgia really means in my life.
I CAN go to a concert, but since my nervous system is already overloaded, I will not be taking care of myself in doing so.I can barely stand the noise of the television and am NEVER around others without ear plugs, and cannot tolerate even going to church regularly, so a concert would just be asking for the ramifications. Perhaps there are some of you that can do these things with no problem. And while I applaud you, I'm not you. I DO get exhausted easily. Most of the time for no reason. I do stay home 95% of the time. I require tons of quiet and extremely limited activity.
This is not defeatist. I don't feel bad for myself. Sure, I'm disappointed and angry that I have this beastly condition, however, I am aware that this is a HUGE accomplishment! A year ago I probably would have went anyway, at the pressure from both fibro and non-fibro friends. I would have went against my gut and tried to fit myself neatly into the world that I honestly don't belong in anymore.
This is a milestone and I'm too grateful not to share.
:)
I convinced myself it was going to be some polite little affair, but the reality is that it would be hundreds of people in one building, bright lights like a concert, and loud music. In this case choosing not to go takes more effort and strength (A reminded me). To drive 2 hours, go to a concert (cause lets not mince words, that's what it would be), stay overnight, and drive 2 hours home is not a smart choice.
I feel sad at realizing yet again another "loss" and thing that Fibro makes unenjoyable, but I feel kinda proud too.
It makes me feel like I'm taking care of myself better.
Most people without Fibro (and even some that do) would tell me it would be good to go. I agree. It really would. However, it is even better NOT to go. This shows that all of my self work and hard nights have transformed into my ability to recognize my very real sickness and limitations. It means I have reached a point where, yes, a part of me still rebels against the reality of having a Neuro-Immune illness, but I now grasp how vital it is to pay attention to what having Fibromyalgia really means in my life.
I CAN go to a concert, but since my nervous system is already overloaded, I will not be taking care of myself in doing so.I can barely stand the noise of the television and am NEVER around others without ear plugs, and cannot tolerate even going to church regularly, so a concert would just be asking for the ramifications. Perhaps there are some of you that can do these things with no problem. And while I applaud you, I'm not you. I DO get exhausted easily. Most of the time for no reason. I do stay home 95% of the time. I require tons of quiet and extremely limited activity.
This is not defeatist. I don't feel bad for myself. Sure, I'm disappointed and angry that I have this beastly condition, however, I am aware that this is a HUGE accomplishment! A year ago I probably would have went anyway, at the pressure from both fibro and non-fibro friends. I would have went against my gut and tried to fit myself neatly into the world that I honestly don't belong in anymore.
This is a milestone and I'm too grateful not to share.
:)
Tuesday, February 5, 2013
My Soul Sings
Sometimes the presence of Jesus is so sweet that it feels as though one earthly body cannot hold it all in. I suppose that is the point. It's not meant to be held in, but rather to pour so richly in us that we cannot help but spill out. Not us, but Him.
It makes me so ecstatically overwhelmed.
Grace. Kindness. Joy.
Not Janet, but JESUS.
Doesn't that sound beautiful rolling off the tongue?
Jesus.
Today I got up after these last few days of that kind of pain in my hip/back/leg that begs to be ripped from my body, with the purpose of going somewhere. Nowhere fancy, just the library or to look for Snapple at a gas station. Sometimes with Fibro (okay, honestly, ALL the time) these simple outings are extravaganzas. Like having an off campus day from a hospital of let out of the cage of a prison cell. Except my prison comes with me wherever I go, the boundary line just moves around. I took a shower
(I am so in love with hot showers lately. It's my crush. It soothes this pain filled body so good.) and decided to get out into the sunshine.
In the car I put on my current favorite worship album and felt the deliciousness of the day come over me. I sang to Jesus and smiled goofy to myself, thinking deeply about how truly wonderful He is. How generous and marvelous and sweet. He is REALLY the sweetest. No one knows how to woo like Jesus does.
My first stop was to the local thrift shop. I love to peruse the collection of books and usually find some treasures for my own library. There wasn't really anything I wanted until I got to the last row. That was when I spotted it... Could it be? The very same book I had heard about a month ago? The one I desperately wanted to order but could not afford? The one the library here does not carry so I had to put it on hold in CA for my Auntie to pick up and ship to me?
Yes, yes it was!
This is not a common book. The chances of the thrift store carrying it was slim to none, and yet there it was!
I carried my new treasure to the check out and paid $1.
I smile now as I type this. Once more I am reminded of how much God is in the details. He didn't have to put that book there, but He did. His romance for me today was in the brilliant blue sunshine of the big, big sky and a beautiful book I was aching to read. It was in the basket of library books and the magazines I got to leaf through, in the random guy who told me I am pretty, and in the strawberry lemonade I guzzled cold.
Some days the hurting is far more then physical. Endless pain and fatigue starts to cloud the soul, until it clogs. It gets dark and nothing seems enjoyable. It's all one can do to keep going. So when the beauty starts to tug hard at my heels, begging "see me!" I am hungry for more. Instantly amazed at what I am missing when my eyes are downcast. Those bleak days make these shiny ones so much more cherished. It restores HOPE. And that hope fuels me through the cloudy days when they slam into me again, leaving me breathless and overwhelmed.
His love, it IS extravagant. Wildly so.
The pain is still here. Surely my heating pad will be pressed against my hip and thigh in a matter of minutes, but my soul... My soul it soars and sings and rests all at once. I am loved by God. I am dazzled by God. I am lost in love and wanting more still.
Thank you for today, my Jesus.
Thank you for every day.
It makes me so ecstatically overwhelmed.
Grace. Kindness. Joy.
Not Janet, but JESUS.
Doesn't that sound beautiful rolling off the tongue?
Jesus.
Today I got up after these last few days of that kind of pain in my hip/back/leg that begs to be ripped from my body, with the purpose of going somewhere. Nowhere fancy, just the library or to look for Snapple at a gas station. Sometimes with Fibro (okay, honestly, ALL the time) these simple outings are extravaganzas. Like having an off campus day from a hospital of let out of the cage of a prison cell. Except my prison comes with me wherever I go, the boundary line just moves around. I took a shower
(I am so in love with hot showers lately. It's my crush. It soothes this pain filled body so good.) and decided to get out into the sunshine.
In the car I put on my current favorite worship album and felt the deliciousness of the day come over me. I sang to Jesus and smiled goofy to myself, thinking deeply about how truly wonderful He is. How generous and marvelous and sweet. He is REALLY the sweetest. No one knows how to woo like Jesus does.
My first stop was to the local thrift shop. I love to peruse the collection of books and usually find some treasures for my own library. There wasn't really anything I wanted until I got to the last row. That was when I spotted it... Could it be? The very same book I had heard about a month ago? The one I desperately wanted to order but could not afford? The one the library here does not carry so I had to put it on hold in CA for my Auntie to pick up and ship to me?
Yes, yes it was!
This is not a common book. The chances of the thrift store carrying it was slim to none, and yet there it was!
I carried my new treasure to the check out and paid $1.
I smile now as I type this. Once more I am reminded of how much God is in the details. He didn't have to put that book there, but He did. His romance for me today was in the brilliant blue sunshine of the big, big sky and a beautiful book I was aching to read. It was in the basket of library books and the magazines I got to leaf through, in the random guy who told me I am pretty, and in the strawberry lemonade I guzzled cold.
Some days the hurting is far more then physical. Endless pain and fatigue starts to cloud the soul, until it clogs. It gets dark and nothing seems enjoyable. It's all one can do to keep going. So when the beauty starts to tug hard at my heels, begging "see me!" I am hungry for more. Instantly amazed at what I am missing when my eyes are downcast. Those bleak days make these shiny ones so much more cherished. It restores HOPE. And that hope fuels me through the cloudy days when they slam into me again, leaving me breathless and overwhelmed.
His love, it IS extravagant. Wildly so.
The pain is still here. Surely my heating pad will be pressed against my hip and thigh in a matter of minutes, but my soul... My soul it soars and sings and rests all at once. I am loved by God. I am dazzled by God. I am lost in love and wanting more still.
Thank you for today, my Jesus.
Thank you for every day.
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