If Fibromyalgia wasn't invisible you would see...
Hot electric currents of pain running throughout my body. Meeting, blending, touching like red hot cords strung like ropes, criss crossing at the small of my back, the shoulder blades, the legs, everywhere. You would see how the elbows stab when I prop my head in my hands while attempting to lean on a table, the way the bone seems to grind into the soft flesh of the leg. You would see the fire that spreads and stops and spreads again. Arches of feet and inner thighs aching and stabbing and pulling.
If Fibromyalgia wasn't invisible you would see the fatigue stretch heavy over limbs, coating the eyes and causing the world to blur and shift together. You would see that cloud planted in my brain, covering, pulling like a cloak until I cannot think straight.
You would see the exhaustion seep slowly over each muscle, each ligament. Instead of me saying I am so tired, you would be able to watch as my body is taken over and all I can do is lay here with no energy to even go to the bathroom.
If Fibromyalgia wasn't invisible you would stop judging me. You would stop comparing your ailment with mine. You would stop expecting so much. You would see exactly how much it hurts and takes away from me and you would watch me smile and fold the laundry and walk through the house with that pulsing, alive sickness always thrumming inside of me.
You would stop doubting me. You would realize that I don't want this and you would see how very hard I push against it and how it's not something you can just pretend is not real. You would witness my defeat as I learn that again and again.
If Fibromyalgia wan't invisible you would see the reality of it. It would stop being some weird thing you heard about and become real. You would see that the Lyrica commercials are not accurate and you would stop trying to fix me.
If Fibromyalgia wan't invisible....
Saturday, July 21, 2012
Thursday, July 19, 2012
Recovery
Yesterday I met with a dear, cherished friend and we had such a grand time chatting and laughing. I had the best time and a huge part of that is because she was so gracious and allowed me to be honest about Fibromyalgia. She didn't act put off or annoyed when I had to plug one ear or when I lost my train of thought. It was so lovely to be able to go out into the world and feel functional. It's always a treat when that happens.
Midway through I felt the Fibro start to tug. It wan't gone or anything before that but there is a certain point when you can actually feel it creep on a bit stronger- random pain bits in the tuck of the arm, the glaze that creeps slowly over temples and eyes, muscle spasms that you try to ignore. There is still that desire.... that desperate belief that maybe you have mastered it! Maybe you can ignore Fibro! Maybe you don't really have it and it was all a mistake or mis-diagnosis or not a real sickness after all.
But no.... it is real and it does catch up and you cannot ignore it. I do not say this in a defeatist fashion. No, I mean this as more awareness for the self. For the YOU that you keep trying to be. The me I am trying to be. There was a moment when the waiter came to get my plate and I almost lifted it to him, but then I realized how heavy it was and I did not pick it up. I knew instinctively that I could lift it but if I did that would mean my wrists would ache and throb and feel like little knives chasing into skin. So I didn't pick it up! A huge victory! Early on, my pride would have had me lift the plate anyway and not care that I would "pay the price" later. I would have been ashamed, embarrassed, and annoyed at myself. I may have even gotten into a funky mood. But growth has occurred... sometimes it doesn't feel like it, but it has, and it is a huge victory in this altered lifestyle.
I stayed out for many hours yesterday and I had fun. Last night I thought again, "maybe I escaped the aftermath. Maybe this time it'll be different." But I felt it come on as I fell into sleep and today I woke up feeling slammed by a bus. The fatigue is unrelenting, pressing into every space it can find, sounds are a full on assault, and my mood is not so pretty to say the least. Think about it- are you super pleasant when you are sick and all you want is sleep and a warm heater on your face (maybe that's just me), and for the mood to just go away? Feeling only the stifling breath of sickness and being annoyed that you cannot just be better?
It's frustrating to never be able to escape Fibro. To have to weigh everything.... if I go out then I will not be able to do this or that or whatever. Maybe I shouldn't even be blogging right now because I am in a snit and I don't want to say mean things.
But I want to be real. It's disappointing. Over and over again. It's like being tricked. Going out for a day and being a part of the outside world and then coming home with high hopes of feeling well and able again, even if we tell ourselves we don't. But when the crash comes it's devastating. It's loss. It's not wanting advice from the normals because as much as they love us they just don't always grasp that our life IS different and they cannot cure us with their magical diets and secret celery juices and hope. They mean oh so well, but when we are struggling to stay afloat in the midst of a flare, the words only deepen our anger and our desperation. The pure need to be well, to be able, to not feel THIS storm is unrelenting and severe and suffocating. It is a battle understood only by those also in it.
We are tired. Of doctors telling us we are too young, belittling us, telling us that our big task a day is not a big task (this actually did happen to my friend), which has the potential to crush someone. When you have Fibro doing laundry, cooking a meal, going to the store, creating projects for ourselves at home as to not go insane with cabin fever or helplessness or depression or isolation.... these are HUGE victories for us. The stuff that normals take for granted. The stuff I used to take for granted too. We are tired of well meaning family and friends and even strangers trying to talk us off of a ledge we aren't even on. We aren't lazy. We aren't just giving in. We aren't passive about this. We fight. Every single day we are strong and brave and we talk with you about the new television show or we pour our glass of almond milk even though the carton feels like it may snap off our wrist. We laugh. We research our conditions and we face prejudice and disregard. We don't tell you every single time it hurts, because we have learned that this is the Fibro life and we have learned through our depression and agony and loss and strife. We have sat in this boat amidst the choppiest of waters and even if we sometimes wanted to just jump overboard and not hold on so tightly anymore, we have and we do.
We are survivors. We are strong. We fight.
So please be sensitive. It may not be a big deal to you when we fold towels or babysit the grandkids, but for us... oh, for us it is a mountaintop.
We do not want your pity. We don't need it. We may be real and transparent with our struggles, but we don't want to be coddled (well sometimes I literally do ask to be held like a fetus but it's more of a joke), we just want compassion. The leeway to be sick and not have to justify it at every turn.
Thank you to my wonderful, supportive friend, Nikki. You made an outing yesterday absolutely tolerable and enjoyable and I will always be grateful for that.
Midway through I felt the Fibro start to tug. It wan't gone or anything before that but there is a certain point when you can actually feel it creep on a bit stronger- random pain bits in the tuck of the arm, the glaze that creeps slowly over temples and eyes, muscle spasms that you try to ignore. There is still that desire.... that desperate belief that maybe you have mastered it! Maybe you can ignore Fibro! Maybe you don't really have it and it was all a mistake or mis-diagnosis or not a real sickness after all.
But no.... it is real and it does catch up and you cannot ignore it. I do not say this in a defeatist fashion. No, I mean this as more awareness for the self. For the YOU that you keep trying to be. The me I am trying to be. There was a moment when the waiter came to get my plate and I almost lifted it to him, but then I realized how heavy it was and I did not pick it up. I knew instinctively that I could lift it but if I did that would mean my wrists would ache and throb and feel like little knives chasing into skin. So I didn't pick it up! A huge victory! Early on, my pride would have had me lift the plate anyway and not care that I would "pay the price" later. I would have been ashamed, embarrassed, and annoyed at myself. I may have even gotten into a funky mood. But growth has occurred... sometimes it doesn't feel like it, but it has, and it is a huge victory in this altered lifestyle.
I stayed out for many hours yesterday and I had fun. Last night I thought again, "maybe I escaped the aftermath. Maybe this time it'll be different." But I felt it come on as I fell into sleep and today I woke up feeling slammed by a bus. The fatigue is unrelenting, pressing into every space it can find, sounds are a full on assault, and my mood is not so pretty to say the least. Think about it- are you super pleasant when you are sick and all you want is sleep and a warm heater on your face (maybe that's just me), and for the mood to just go away? Feeling only the stifling breath of sickness and being annoyed that you cannot just be better?
It's frustrating to never be able to escape Fibro. To have to weigh everything.... if I go out then I will not be able to do this or that or whatever. Maybe I shouldn't even be blogging right now because I am in a snit and I don't want to say mean things.
But I want to be real. It's disappointing. Over and over again. It's like being tricked. Going out for a day and being a part of the outside world and then coming home with high hopes of feeling well and able again, even if we tell ourselves we don't. But when the crash comes it's devastating. It's loss. It's not wanting advice from the normals because as much as they love us they just don't always grasp that our life IS different and they cannot cure us with their magical diets and secret celery juices and hope. They mean oh so well, but when we are struggling to stay afloat in the midst of a flare, the words only deepen our anger and our desperation. The pure need to be well, to be able, to not feel THIS storm is unrelenting and severe and suffocating. It is a battle understood only by those also in it.
We are tired. Of doctors telling us we are too young, belittling us, telling us that our big task a day is not a big task (this actually did happen to my friend), which has the potential to crush someone. When you have Fibro doing laundry, cooking a meal, going to the store, creating projects for ourselves at home as to not go insane with cabin fever or helplessness or depression or isolation.... these are HUGE victories for us. The stuff that normals take for granted. The stuff I used to take for granted too. We are tired of well meaning family and friends and even strangers trying to talk us off of a ledge we aren't even on. We aren't lazy. We aren't just giving in. We aren't passive about this. We fight. Every single day we are strong and brave and we talk with you about the new television show or we pour our glass of almond milk even though the carton feels like it may snap off our wrist. We laugh. We research our conditions and we face prejudice and disregard. We don't tell you every single time it hurts, because we have learned that this is the Fibro life and we have learned through our depression and agony and loss and strife. We have sat in this boat amidst the choppiest of waters and even if we sometimes wanted to just jump overboard and not hold on so tightly anymore, we have and we do.
We are survivors. We are strong. We fight.
So please be sensitive. It may not be a big deal to you when we fold towels or babysit the grandkids, but for us... oh, for us it is a mountaintop.
We do not want your pity. We don't need it. We may be real and transparent with our struggles, but we don't want to be coddled (well sometimes I literally do ask to be held like a fetus but it's more of a joke), we just want compassion. The leeway to be sick and not have to justify it at every turn.
Thank you to my wonderful, supportive friend, Nikki. You made an outing yesterday absolutely tolerable and enjoyable and I will always be grateful for that.
Wednesday, July 11, 2012
In the Midst
When I was a little girl I broke my ankle sliding down our stairs in new bunny rabbit slippers. I vaguely recall having a cast and some crutches, but it's a very distant thing to me now.
When I was 19 I hopped off of my bed and CRACK! There went that ankle again. Another cast.
That same ankle is one I have sprained over and over since then. It is weak and I trip on it easily. The last time I sprained it was just about a month or so ago when I got to California. I was told in 2005 that I have a floating bone and would need surgery to remove it. I elected not to have that surgery as they said I would be down for about 3 months if I did have it.
My life was far too busy. Each time I had an ailment over the years, the ankle situation of 1999, the spraining of 2002, my bout with cervical cancer growth and the LEEP procedure to remove the cancer cells, migraines, vertigo, de quervain's tenosynovitis... all of it... I never took days off. I went right to work, I continued my routine of walking 4-5 miles a day or doing pilates or walking on the treadmill. I was busy, active, social, doing everything for everyone and running myself into the ground. Non-stop Janet in action. I didn't have time to be hurt or sick or ailing! Are you kidding? there were kids to take to school, and after school activities and field trips and parent days and girl scout cookie sales and youth group and corporate prayer, and meeting with friends to get counsel or give counsel. It was a bursting, abundant lifestyle and I rarely slowed down, if ever.
Today, numerous ailments later (and all at the same time), my body is no longer capable of ignoring the very real and very persistent demands of illness. It hasn't been for a few years now and although I have come to accept it in certain ways in recent months, I can't say that I fully have just yet. I'm quite alright with that. Where I am now emotionally is far better then I was just months ago, certainly better then years ago, and I know I will be even better mentally in another year from now, and so on.
But the thing is this.... it never stops being frustrating. As a chronically ill person the expectation (no matter how slim) to wake up one morning and be able-bodied again does not ever go away. That me who could ignore ankle pain and throbbing after a walk, or intense back pain after pilates no longer exists. Case in point, today, on day 6 or so of an intense flare, I went outside and walked over 2 houses down to take a picture of some purple flowers. And oh how I hurt! There are no words to explain it. My head is stuffed as if with cotton balls, my back throbs as though I had been hiking up some steep mountains, and everything that seems insignificant (the sides of fingers or a part of an arm)is screaming in agony.
While in a flare that lasts for a period of days or weeks it starts to get more agonizing than usual. It feels like the real world is so far away and these four walls are the only walls I will ever see again. Seriously.
Can you recall when you've had food poisoning and it hurt to move, to breathe even? To be touched? How you had to race to the bathroom to vomit or purge from your digestive tract? How life felt like hell?
Or how about the last time you had the flu or some kind of 24 hour bug that left you curled up like a fetus begging for relief? Can you conjure that up in your mind?
Now couple that with that time you went to that amusement park and you walked all day and when you climbed into your hotel bed that night your feet were screaming and every muscle was on fire?
That's Fibromyalgia.
Everyday.
The word flare is so ridiculous to me, because honestly Fibro is one big flare. From the moment it becomes a reality in your body it is simply the way life is. Pain. Fatigue. They take turns playing bad guy and honestly, the pain is much preferable to the chronic fatigue. At least with pain the head is clear, but when fatigue decides to take the upper hand all bets are off. The head swims in fog, the eyelids urge to close every second, and the grouchy factor kicks up about 20 notches. Who wants to be around people when all you can do is sleep?
What's been bugging me lately is the prejudice people have about invisible illness. From the stink-eye lady on the airplane to people in my daily life, to well meaning family and friends. Here is what you have to understand: FIBROMYALGIA IS DIFFERENT FOR EVERYONE.
Some people who endure it can work, but perhaps they don't have any viruses with their order of Fibromyalgia supreme. Perhaps they do not suffer from chronic fatigue. There are so many different factors that contribute to each individual case of Fibro.
My aunt for example has Fibro and she works full time.
That's great for her, but at my stage, that's not possible. I've tried. For two years I tried out my good ole "ignore it and keep going" pattern and I drove myself almost to the brink of insanity. Seriously.
It makes me sad that people feel like they need to force themselves. That I felt like I needed to force myself. That I sometimes still do, especially, ESPECIALLY during a flare. That is when we are at our most weakest. When the lies become big and we feel like failures because we can't even handle sitting in a room with another human being.
I am so over the prejudice about Fibro.
Look at who you are judging.
Is that person in your life someone who used to be there for everyone else? Was she/he a social butterfly? Were they happy, upbeat individuals who were down for a meal or a spontaneous drive to the city? Were they active? Did they have a job? Did they work hard?
I think one of the most trying things about this sickness is the judgment from people that have known me my whole life. Who saw me with a car full of kids 95% of the time, and knew how dedicated and excited I was about living my life to the fullest.
People who now roll their eyes when I explain why a big television makes me feel like I am going to have a seizure. People who try to fix me with their suggestions or who bury me deeper in quicksand when they tell me how their friend or brother's friend's cousin's neighbor's baby mama can work 70 hours a week or exercise everyday for 3 hours and has Fibromyalgia.
If that is true, kudos to them! That is excellent... and also a little sad, because the truth is, they are probably pushing themselves to the limit and although you may not see it, I can pretty much guarantee they are curled up in a ball of extreme pain and turmoil at the end of the day.
So no thank you. It has taken me over 2 years to reach a place where I can be honest about my limitations and who I am now. I am proud of the places God has brought me through emotionally and physically. A place where I no longer have to act like I have it all together and I can admit I need help. A place where I can admit I am sick and not be ashamed.
So it is you, eye rollers of this world, scoffers of invisible illnesses, that I feel most sorry for. Because one day your whole world just may get pulled out from under you with disease or strife and you will have no idea what to do with yourself.
I only hope that those in your sphere will accept you and love you, and not ignore or belittle your very real pain and sickness, because it hurts, it really does.
When I was 19 I hopped off of my bed and CRACK! There went that ankle again. Another cast.
That same ankle is one I have sprained over and over since then. It is weak and I trip on it easily. The last time I sprained it was just about a month or so ago when I got to California. I was told in 2005 that I have a floating bone and would need surgery to remove it. I elected not to have that surgery as they said I would be down for about 3 months if I did have it.
My life was far too busy. Each time I had an ailment over the years, the ankle situation of 1999, the spraining of 2002, my bout with cervical cancer growth and the LEEP procedure to remove the cancer cells, migraines, vertigo, de quervain's tenosynovitis... all of it... I never took days off. I went right to work, I continued my routine of walking 4-5 miles a day or doing pilates or walking on the treadmill. I was busy, active, social, doing everything for everyone and running myself into the ground. Non-stop Janet in action. I didn't have time to be hurt or sick or ailing! Are you kidding? there were kids to take to school, and after school activities and field trips and parent days and girl scout cookie sales and youth group and corporate prayer, and meeting with friends to get counsel or give counsel. It was a bursting, abundant lifestyle and I rarely slowed down, if ever.
Today, numerous ailments later (and all at the same time), my body is no longer capable of ignoring the very real and very persistent demands of illness. It hasn't been for a few years now and although I have come to accept it in certain ways in recent months, I can't say that I fully have just yet. I'm quite alright with that. Where I am now emotionally is far better then I was just months ago, certainly better then years ago, and I know I will be even better mentally in another year from now, and so on.
But the thing is this.... it never stops being frustrating. As a chronically ill person the expectation (no matter how slim) to wake up one morning and be able-bodied again does not ever go away. That me who could ignore ankle pain and throbbing after a walk, or intense back pain after pilates no longer exists. Case in point, today, on day 6 or so of an intense flare, I went outside and walked over 2 houses down to take a picture of some purple flowers. And oh how I hurt! There are no words to explain it. My head is stuffed as if with cotton balls, my back throbs as though I had been hiking up some steep mountains, and everything that seems insignificant (the sides of fingers or a part of an arm)is screaming in agony.
While in a flare that lasts for a period of days or weeks it starts to get more agonizing than usual. It feels like the real world is so far away and these four walls are the only walls I will ever see again. Seriously.
Can you recall when you've had food poisoning and it hurt to move, to breathe even? To be touched? How you had to race to the bathroom to vomit or purge from your digestive tract? How life felt like hell?
Or how about the last time you had the flu or some kind of 24 hour bug that left you curled up like a fetus begging for relief? Can you conjure that up in your mind?
Now couple that with that time you went to that amusement park and you walked all day and when you climbed into your hotel bed that night your feet were screaming and every muscle was on fire?
That's Fibromyalgia.
Everyday.
The word flare is so ridiculous to me, because honestly Fibro is one big flare. From the moment it becomes a reality in your body it is simply the way life is. Pain. Fatigue. They take turns playing bad guy and honestly, the pain is much preferable to the chronic fatigue. At least with pain the head is clear, but when fatigue decides to take the upper hand all bets are off. The head swims in fog, the eyelids urge to close every second, and the grouchy factor kicks up about 20 notches. Who wants to be around people when all you can do is sleep?
What's been bugging me lately is the prejudice people have about invisible illness. From the stink-eye lady on the airplane to people in my daily life, to well meaning family and friends. Here is what you have to understand: FIBROMYALGIA IS DIFFERENT FOR EVERYONE.
Some people who endure it can work, but perhaps they don't have any viruses with their order of Fibromyalgia supreme. Perhaps they do not suffer from chronic fatigue. There are so many different factors that contribute to each individual case of Fibro.
My aunt for example has Fibro and she works full time.
That's great for her, but at my stage, that's not possible. I've tried. For two years I tried out my good ole "ignore it and keep going" pattern and I drove myself almost to the brink of insanity. Seriously.
It makes me sad that people feel like they need to force themselves. That I felt like I needed to force myself. That I sometimes still do, especially, ESPECIALLY during a flare. That is when we are at our most weakest. When the lies become big and we feel like failures because we can't even handle sitting in a room with another human being.
I am so over the prejudice about Fibro.
Look at who you are judging.
Is that person in your life someone who used to be there for everyone else? Was she/he a social butterfly? Were they happy, upbeat individuals who were down for a meal or a spontaneous drive to the city? Were they active? Did they have a job? Did they work hard?
I think one of the most trying things about this sickness is the judgment from people that have known me my whole life. Who saw me with a car full of kids 95% of the time, and knew how dedicated and excited I was about living my life to the fullest.
People who now roll their eyes when I explain why a big television makes me feel like I am going to have a seizure. People who try to fix me with their suggestions or who bury me deeper in quicksand when they tell me how their friend or brother's friend's cousin's neighbor's baby mama can work 70 hours a week or exercise everyday for 3 hours and has Fibromyalgia.
If that is true, kudos to them! That is excellent... and also a little sad, because the truth is, they are probably pushing themselves to the limit and although you may not see it, I can pretty much guarantee they are curled up in a ball of extreme pain and turmoil at the end of the day.
So no thank you. It has taken me over 2 years to reach a place where I can be honest about my limitations and who I am now. I am proud of the places God has brought me through emotionally and physically. A place where I no longer have to act like I have it all together and I can admit I need help. A place where I can admit I am sick and not be ashamed.
So it is you, eye rollers of this world, scoffers of invisible illnesses, that I feel most sorry for. Because one day your whole world just may get pulled out from under you with disease or strife and you will have no idea what to do with yourself.
I only hope that those in your sphere will accept you and love you, and not ignore or belittle your very real pain and sickness, because it hurts, it really does.
Monday, July 2, 2012
Desensitized
When one lives with chronic pain non-stop for years on end, it becomes a bit uncomfortable to handle talking to people who are going through some kind of temporary pain. It's not that we don't care, not that we think our pain is soooooo much worse (though sometimes it just may be the truth), but rather the fact that we have learned pain as a language and it is the one we speak most fluently.
We don't have the luxury of feeling it only on occasion. In most cases our pain is the sort that has not left since the day it came on us. That includes our exhaustion too. There is no break. Oh, how we long for those days where we'd get hit with just a simple cold or flu and know that it would break in a few days and we could resume our normal lives.... that's just it... THIS is normal. Feeling flu like, feeling the cramps twist and ache and tear in our muscles and bones, the sensation of eyelids so heavy and begging to close.... the stabs in the ribs and fingers and arches of our feet.... they never go away. They simply move around, or take different forms each day. One day it may be stabbing, the next aching, and still the next a furious storm of a whole bunch of pain we never could imagine existed.
It is our life.
When someone speaks to me about being tired, or having a headache, or what have you, I genuinely care. I honestly wish for that pain to go away. I pray for you. But I don't have words to give you, because I feel it everyday and it's normal to me. I don't remember what it feels like to not have pain, in some kind of form, at all times. I have a hazy memory of being a woman without pain, but the actual physical sensation? Oh, that is long gone.
So when my lips grip in that compressed line when you tell me that you ache, or when I smile tersely, it's not because I don't care. It's because I feel pain everyday and I have no idea what to say to someone who has it in a fleeting fashion.
If I did open my mouth I would likely tell you all about Fibromyalgia and I notice how eyes glaze over when I try to share, or I would try to remind you that it is temporary and point you to the good things, and you would get frustrated because your pain is just as valid as mine is, but I cannot validate it for you.
Your right now pain is my everyday, this is my life pain and I don't know what else to do except tell you it will get better.
Because it will.
You are blessed. You are so very, marvelously lucky that your pain is going to go away.
Do you know that?
Please try to be grateful that your pain will go away. Please try to be grateful that your cold or your flu or your broken bone will heal. You will resume your normal lifestyle. You will still be able to hold down a job, go to weddings, be there for your friends and family, have a social life.... after a few days or weeks of resting.
Please try to think about how you feel at this very moment... sick, in bed, your body demanding things from you that you don't even know how to give....
and realize that that pain, that exhaustion, that "please, please leave me alone" feeling is what we Fibromyalgia sufferers feel every single day of our lives. We feel that way 24;7 with no reprieve and we still have to do things like laundry and dishes and errands and live life.
We have learned to work with it. Ignoring the silent screams and moans that the muscles are screeching. Pretending we are not going to keel over as we stand in the garage talking with the neighbor.
You can't see it. It's invisible. We look spry. We smile, we laugh. We reach for that plate to put our spaghetti dinner on, we may even walk around the block.
That's because we have no choice. If we gave in every time our bodies demanded, we would never move. EVER. That is not an exaggeration.
There is literally no break. We have learned to live this way.
Your pain is just as valid as ours.
I'm sorry you hurt.
But you will get better.
We don't have the luxury of feeling it only on occasion. In most cases our pain is the sort that has not left since the day it came on us. That includes our exhaustion too. There is no break. Oh, how we long for those days where we'd get hit with just a simple cold or flu and know that it would break in a few days and we could resume our normal lives.... that's just it... THIS is normal. Feeling flu like, feeling the cramps twist and ache and tear in our muscles and bones, the sensation of eyelids so heavy and begging to close.... the stabs in the ribs and fingers and arches of our feet.... they never go away. They simply move around, or take different forms each day. One day it may be stabbing, the next aching, and still the next a furious storm of a whole bunch of pain we never could imagine existed.
It is our life.
When someone speaks to me about being tired, or having a headache, or what have you, I genuinely care. I honestly wish for that pain to go away. I pray for you. But I don't have words to give you, because I feel it everyday and it's normal to me. I don't remember what it feels like to not have pain, in some kind of form, at all times. I have a hazy memory of being a woman without pain, but the actual physical sensation? Oh, that is long gone.
So when my lips grip in that compressed line when you tell me that you ache, or when I smile tersely, it's not because I don't care. It's because I feel pain everyday and I have no idea what to say to someone who has it in a fleeting fashion.
If I did open my mouth I would likely tell you all about Fibromyalgia and I notice how eyes glaze over when I try to share, or I would try to remind you that it is temporary and point you to the good things, and you would get frustrated because your pain is just as valid as mine is, but I cannot validate it for you.
Your right now pain is my everyday, this is my life pain and I don't know what else to do except tell you it will get better.
Because it will.
You are blessed. You are so very, marvelously lucky that your pain is going to go away.
Do you know that?
Please try to be grateful that your pain will go away. Please try to be grateful that your cold or your flu or your broken bone will heal. You will resume your normal lifestyle. You will still be able to hold down a job, go to weddings, be there for your friends and family, have a social life.... after a few days or weeks of resting.
Please try to think about how you feel at this very moment... sick, in bed, your body demanding things from you that you don't even know how to give....
and realize that that pain, that exhaustion, that "please, please leave me alone" feeling is what we Fibromyalgia sufferers feel every single day of our lives. We feel that way 24;7 with no reprieve and we still have to do things like laundry and dishes and errands and live life.
We have learned to work with it. Ignoring the silent screams and moans that the muscles are screeching. Pretending we are not going to keel over as we stand in the garage talking with the neighbor.
You can't see it. It's invisible. We look spry. We smile, we laugh. We reach for that plate to put our spaghetti dinner on, we may even walk around the block.
That's because we have no choice. If we gave in every time our bodies demanded, we would never move. EVER. That is not an exaggeration.
There is literally no break. We have learned to live this way.
Your pain is just as valid as ours.
I'm sorry you hurt.
But you will get better.
Life is but a Breath
There was this kid who died earlier today. He was only 17.
17.
Two days ago my uncle got into an accident when a truck crashed into his scooter and he flew into the air. He walked away with no broken bones but severely banged up. He should have died, according to the people on the scene.
The day before that I was driving to Starbucks when I saw the scene of a small accident. No one was injured but one of the cars was smashed up in the front. I could not see the woman, but for her back and I could see that she was shaking and crying. My own eyes welled with tears.
3 separate accidents, 3 different people, 3 different outcomes.
My heart aches. I feel so much. Way more than I could express in a blog post right now, but the most dominant feeling is remembering how fleeting life is. Birth, the dash, and death.
We go around everyday worrying and fretting over out trivial concerns. We have conversations, grab our food to go, drive around, take trips, make friends, we laugh. And suddenly, without warning, it's just done. Only God knows our expiration date. It gives a lot of weight to what we are doing while we are alive.
I didn't know this kid who passed away, but seems that many of the teens in my life DID know him, and maybe some of them even knew him well. I imagine their sadness, the heavy cloaks of grief his parents and family must feel as they think about how they just saw him yesterday.
When someone dies I always think about weird things. What was their last meal? Did they have to go to the bathroom?
What was this boy thinking about as he drove? What passed his mind before that car slammed into him ending his life forever?
I took a peek at his Facebook page and just a few days ago he "liked" In and Out Burger.
A few days ago.
I sit here sobbing.
I didn't know this kid, but it doesn't matter. He is all of us and we are him.
Not one of us is invincible. Whether we die in old age or die young, the end result is always going to be death.
I am reminded to love life and to cherish it, even in the difficult moments. Because a difficult moment is still an alive moment. It's still ours.
I feel challenged to be aware of my own breathing. The one thing we take advantage of more than anything else. In, out, in, out. A heart beating, a brain creating thoughts, lips that open and speak.
Today may be our only day to love people, our only day to make a difference in our sphere of influence. Let us be oh so grateful.
You don't know the first thing about tomorrow. You're nothing but a wisp of fog, catching a brief bit of sun before disappearing.
James 4:14
Man is like a breath; his days are like a fleeting shadow.
Psalm 144:4
Show me, O LORD, my life's end and the number of my days; let me know how fleeting is my life.
Psalm 39:4
This kid had likes, dislikes, friends, a family. He was probably planning for his future. And now he is gone.
It happens everyday, to so many people. Let us value life and the gift we have in it right now, at this very moment.
Celebrate.
17.
Two days ago my uncle got into an accident when a truck crashed into his scooter and he flew into the air. He walked away with no broken bones but severely banged up. He should have died, according to the people on the scene.
The day before that I was driving to Starbucks when I saw the scene of a small accident. No one was injured but one of the cars was smashed up in the front. I could not see the woman, but for her back and I could see that she was shaking and crying. My own eyes welled with tears.
3 separate accidents, 3 different people, 3 different outcomes.
My heart aches. I feel so much. Way more than I could express in a blog post right now, but the most dominant feeling is remembering how fleeting life is. Birth, the dash, and death.
We go around everyday worrying and fretting over out trivial concerns. We have conversations, grab our food to go, drive around, take trips, make friends, we laugh. And suddenly, without warning, it's just done. Only God knows our expiration date. It gives a lot of weight to what we are doing while we are alive.
I didn't know this kid who passed away, but seems that many of the teens in my life DID know him, and maybe some of them even knew him well. I imagine their sadness, the heavy cloaks of grief his parents and family must feel as they think about how they just saw him yesterday.
When someone dies I always think about weird things. What was their last meal? Did they have to go to the bathroom?
What was this boy thinking about as he drove? What passed his mind before that car slammed into him ending his life forever?
I took a peek at his Facebook page and just a few days ago he "liked" In and Out Burger.
A few days ago.
I sit here sobbing.
I didn't know this kid, but it doesn't matter. He is all of us and we are him.
Not one of us is invincible. Whether we die in old age or die young, the end result is always going to be death.
I am reminded to love life and to cherish it, even in the difficult moments. Because a difficult moment is still an alive moment. It's still ours.
I feel challenged to be aware of my own breathing. The one thing we take advantage of more than anything else. In, out, in, out. A heart beating, a brain creating thoughts, lips that open and speak.
Today may be our only day to love people, our only day to make a difference in our sphere of influence. Let us be oh so grateful.
You don't know the first thing about tomorrow. You're nothing but a wisp of fog, catching a brief bit of sun before disappearing.
James 4:14
Man is like a breath; his days are like a fleeting shadow.
Psalm 144:4
Show me, O LORD, my life's end and the number of my days; let me know how fleeting is my life.
Psalm 39:4
This kid had likes, dislikes, friends, a family. He was probably planning for his future. And now he is gone.
It happens everyday, to so many people. Let us value life and the gift we have in it right now, at this very moment.
Celebrate.
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