I just realized that I wrote more of a narrative instead of a window in. I will leave it on this entry, but move the narrative writing underneath. Here's a glimpse inside the pain window:
As a chew my dinner I wonder if it will help the nausea or make it worse. Did I take pain medicine recently? Surely I did. Honestly I can't remember much as the burning/pounding/swelling in my head has drowned out any memory or reasoning. I really wish whatever I maybe took would work better. Or the nausea meds or something. The car ride from Portland felt like a torture chamber. My head burns and feels like it is going to explode. The sound of my husband's feet feels like a horse is running through the house. I can hear each time he moves in the kitchen. It is so very loud. As are the cars a block away and the train that is even farther, as is the sound of the keys as I type. It's a loud world. There went a car. It was loud too. Maybe the keys are getting louder. Maybe I'm just nuts. When I chew my dinner it hurts my head in a different way. And when I move it feels like my dinner may just come up. I wish somehow I could walk without touching my feet to the floor. Maybe if I could glide across the floor it would hurt my head less. Something fell to the floor and made a bang. Pretty sure I just died a little inside from the spike in pain. Oh sweet doggie, can you chew off your toe nails so they are not so loud. Speaking of doggies, one across the street can you please stop barking? Surely my food is digested enough so I can lay back down because if I sit another minute my head might explode into outer space. Luckily I make it to supine without retching or exploding. Deep breath. Oxygen is good to help the pain levels go down. Whatever they say, it doesn't work. But it lowers stress so that is an added bonus. Anyone wanna step on my foot to distract me? That might help my head pain. Rats. Guess I don't have any takers. At least the dog isn't prancing and the world seems a little less bright and loud. At least for a moment. Yay.
I wrote this yesterday when I was in quite a bit of pain and now tonight after a trip to Portland to OHSU via the I-Cry (I-5)it is just ridiculous. It is hard for me to write about because the pain is truly beyond words.
I open my eyes in the morning. The first activity as I lie there adjusting the body to lesson the back and hip pain from sleeping all night, is to check on the head pain. The hope is that by some miracle I awake one day and it isn't there. This has yet to happen. It often starts off on the lower end of the switch and can worsen as the day goes along. When it begins the day screaming I know I am in for a doozy.
What does it feel like? Well, it's so hard to describe. It doesn't feel like any pain or headache that I have felt before. I refrain from saying, "headaches" because it doesn't go away. It's a single headache since March 20, 2011. There hasn't been one pain free day. Just because I have days where I laugh and have fun and do things in the community doesn't mean it isn't still there. It is. I've just learned to live with a pain that I never thought possible.
In trying to describe it I seem to often say that it feels like my brain is on fire, or that the lining of the brain is inflamed and sloshes against my skull causing extreme pain with every movement. (And extreme nausea, light and sound sensitivity as an added bonus). Sometimes it feels like if my husband drilled a whole in my head some pressure would release and I would feel better. When the pain is off the charts and I can barely move and just lay in bed in tears praying for it to get better, I say that it feels like an alien is trying to get in or out of my head.
But really, what does it feel like to have a chronic head pain for years and years? It feels terrible. It sucks. It makes me willing to do or try just about anything to change it. The way we interact with the world is through our brains. My brain feels like it's on fire. Like fiery mush. Makes life a bit challenging.
I hold on to the belief that this too shall pass and someday the pain will go. I am not the only one dealing with chronic pain. So many of us do. Mostly silently. I speak up in hopes of helping others and making a difference. Putting words to how hard it is to be in pain 24-7, but how we do it anyway.
Getting up and making the best of the day is all there is to do. Somedays just getting up is all that's possible. Other days there is more energy and tolerance for the pain and some glorious days it isn't too bad. But no matter what it is, one just keeps going. There is so much more to one's being than just this body ---- thankfully. Holding onto that gets me through the day. Finding joy in whatever I can makes the days memorable. And giving thanks for as much as possible.
Pain is a drag and I desperately want it to go away. Along with the head pain, the nerve/joint/muscle pain can take a hike too. But regardless of if it is there or not, I will not let it define me. There is so much more to me than this pain.
As a chew my dinner I wonder if it will help the nausea or make it worse. Did I take pain medicine recently? Surely I did. Honestly I can't remember much as the burning/pounding/swelling in my head has drowned out any memory or reasoning. I really wish whatever I maybe took would work better. Or the nausea meds or something. The car ride from Portland felt like a torture chamber. My head burns and feels like it is going to explode. The sound of my husband's feet feels like a horse is running through the house. I can hear each time he moves in the kitchen. It is so very loud. As are the cars a block away and the train that is even farther, as is the sound of the keys as I type. It's a loud world. There went a car. It was loud too. Maybe the keys are getting louder. Maybe I'm just nuts. When I chew my dinner it hurts my head in a different way. And when I move it feels like my dinner may just come up. I wish somehow I could walk without touching my feet to the floor. Maybe if I could glide across the floor it would hurt my head less. Something fell to the floor and made a bang. Pretty sure I just died a little inside from the spike in pain. Oh sweet doggie, can you chew off your toe nails so they are not so loud. Speaking of doggies, one across the street can you please stop barking? Surely my food is digested enough so I can lay back down because if I sit another minute my head might explode into outer space. Luckily I make it to supine without retching or exploding. Deep breath. Oxygen is good to help the pain levels go down. Whatever they say, it doesn't work. But it lowers stress so that is an added bonus. Anyone wanna step on my foot to distract me? That might help my head pain. Rats. Guess I don't have any takers. At least the dog isn't prancing and the world seems a little less bright and loud. At least for a moment. Yay.
I wrote this yesterday when I was in quite a bit of pain and now tonight after a trip to Portland to OHSU via the I-Cry (I-5)it is just ridiculous. It is hard for me to write about because the pain is truly beyond words.
I open my eyes in the morning. The first activity as I lie there adjusting the body to lesson the back and hip pain from sleeping all night, is to check on the head pain. The hope is that by some miracle I awake one day and it isn't there. This has yet to happen. It often starts off on the lower end of the switch and can worsen as the day goes along. When it begins the day screaming I know I am in for a doozy.
What does it feel like? Well, it's so hard to describe. It doesn't feel like any pain or headache that I have felt before. I refrain from saying, "headaches" because it doesn't go away. It's a single headache since March 20, 2011. There hasn't been one pain free day. Just because I have days where I laugh and have fun and do things in the community doesn't mean it isn't still there. It is. I've just learned to live with a pain that I never thought possible.
In trying to describe it I seem to often say that it feels like my brain is on fire, or that the lining of the brain is inflamed and sloshes against my skull causing extreme pain with every movement. (And extreme nausea, light and sound sensitivity as an added bonus). Sometimes it feels like if my husband drilled a whole in my head some pressure would release and I would feel better. When the pain is off the charts and I can barely move and just lay in bed in tears praying for it to get better, I say that it feels like an alien is trying to get in or out of my head.
But really, what does it feel like to have a chronic head pain for years and years? It feels terrible. It sucks. It makes me willing to do or try just about anything to change it. The way we interact with the world is through our brains. My brain feels like it's on fire. Like fiery mush. Makes life a bit challenging.
I hold on to the belief that this too shall pass and someday the pain will go. I am not the only one dealing with chronic pain. So many of us do. Mostly silently. I speak up in hopes of helping others and making a difference. Putting words to how hard it is to be in pain 24-7, but how we do it anyway.
Getting up and making the best of the day is all there is to do. Somedays just getting up is all that's possible. Other days there is more energy and tolerance for the pain and some glorious days it isn't too bad. But no matter what it is, one just keeps going. There is so much more to one's being than just this body ---- thankfully. Holding onto that gets me through the day. Finding joy in whatever I can makes the days memorable. And giving thanks for as much as possible.
Pain is a drag and I desperately want it to go away. Along with the head pain, the nerve/joint/muscle pain can take a hike too. But regardless of if it is there or not, I will not let it define me. There is so much more to me than this pain.
No comments:
Post a Comment