My Old Friend, Pain, And The Spoon Theory
I have been very lax about updating my journal. Duh. Facebook is easier, reaches more people, and this laptop is a piece of shit. (updating on my smart phone is a major pain in the ass, so there's that, too.)
Anyway, my back is playing up. I have had x-rays, an MRI, and seen my gp Doctor. Once again, I have herniated disks pressing on nerve roots, with the added bonus of severe osteoarthritis and spinal stenosis, with the accompanying bone spurs also compromising nerve roots. As I type this, I am in patient limbo acting like a football. My gp wants nothing to do with managing the pain, as my choices are narcotics or psuedonarcs that are all addictive. (I say I don't mind getting hooked again, I'll deal with the fallout once a real treatment plan is put into place).
Anyway, The Spoon Theory. Basically, it is a metaphor for how much energy a person with a chronic illness, or chronic pain, has in a day.
For me, the issue isn't about how much energy I have, but how much activity I have (and what types) before I trigger The Big Pain, for which at the moment, I have No Support. It also doesn't address the guilt that comes from relying on other people who have their own stuff to deal with for every day mundane tasks like driving a car, or shopping for groceries, or even something as simple as cleaning the house. Even preparing a meal for my family becomes a Sisyphean Task with the reward of hurting too much to even sit down and enjoy the meal I made. (Yes, folks! Chronic pain will destroy your appetite. Who knew?)
For me, my "condition" feels like I live in a crystal cage with no door. Those fragile crystal bars on my cage are very easy to break through, but they will cut me to ribbons if I do. Some days, the cage is nice and roomy, and I can fit quite a bit of my day-to-day inside those bars, with no fear of having to walk through those bars to get to the rest of my day. Then there are those days that the cage is only as big as my bed, and just to get out of that cage to so much as participate in my day, I'll need to bust through those crystal bars.
Not only are those bars fragile crystal that will cut me to ribbons, but they are coated in Guilt and Self Pity. Guilt and Self Pity will convince me to run face first through those bars and grin through the gouts of blood (pain, actually) and do stuff even if it means by 8 o'clock I'm so crippled I need help to get into bed.
To add to the whole thing, Guilt isn't just made up of not being able to do stuff and needing to rely on other people. The guilt is made up of medical professionals initially blaming my poor choices and lifestyle of being a fat, middle aged woman on why all of my joints are eat up with osteoarthritis (Yes, even the OA in my hands and neck are because I am a great big fat ass according to some people).
I did this to myself, and thusly am slightly less deserving of compassion as someone with RA, whose immune system decided to go gnaw on their connective tissues. (I don't believe for one fraction of a second that I am to blame for the OA. Even skinny fit not-old people get it, but they "earned" it through sports or some other Noble Reason.)
I have treatment goals, and life changing goals from all of this.
Treatment goals this time are radical spinal surgery to remove the arthritic facet joints, remove my spinal disks that are ruptured, and fully fuse my lumbar spine with screws, bone grafts, and rods so that the nerve impingement doesn't get any worse than it already is.
Anyway, this is what is going on right now.
Anyway, my back is playing up. I have had x-rays, an MRI, and seen my gp Doctor. Once again, I have herniated disks pressing on nerve roots, with the added bonus of severe osteoarthritis and spinal stenosis, with the accompanying bone spurs also compromising nerve roots. As I type this, I am in patient limbo acting like a football. My gp wants nothing to do with managing the pain, as my choices are narcotics or psuedonarcs that are all addictive. (I say I don't mind getting hooked again, I'll deal with the fallout once a real treatment plan is put into place).
Anyway, The Spoon Theory. Basically, it is a metaphor for how much energy a person with a chronic illness, or chronic pain, has in a day.
For me, the issue isn't about how much energy I have, but how much activity I have (and what types) before I trigger The Big Pain, for which at the moment, I have No Support. It also doesn't address the guilt that comes from relying on other people who have their own stuff to deal with for every day mundane tasks like driving a car, or shopping for groceries, or even something as simple as cleaning the house. Even preparing a meal for my family becomes a Sisyphean Task with the reward of hurting too much to even sit down and enjoy the meal I made. (Yes, folks! Chronic pain will destroy your appetite. Who knew?)
For me, my "condition" feels like I live in a crystal cage with no door. Those fragile crystal bars on my cage are very easy to break through, but they will cut me to ribbons if I do. Some days, the cage is nice and roomy, and I can fit quite a bit of my day-to-day inside those bars, with no fear of having to walk through those bars to get to the rest of my day. Then there are those days that the cage is only as big as my bed, and just to get out of that cage to so much as participate in my day, I'll need to bust through those crystal bars.
Not only are those bars fragile crystal that will cut me to ribbons, but they are coated in Guilt and Self Pity. Guilt and Self Pity will convince me to run face first through those bars and grin through the gouts of blood (pain, actually) and do stuff even if it means by 8 o'clock I'm so crippled I need help to get into bed.
To add to the whole thing, Guilt isn't just made up of not being able to do stuff and needing to rely on other people. The guilt is made up of medical professionals initially blaming my poor choices and lifestyle of being a fat, middle aged woman on why all of my joints are eat up with osteoarthritis (Yes, even the OA in my hands and neck are because I am a great big fat ass according to some people).
I did this to myself, and thusly am slightly less deserving of compassion as someone with RA, whose immune system decided to go gnaw on their connective tissues. (I don't believe for one fraction of a second that I am to blame for the OA. Even skinny fit not-old people get it, but they "earned" it through sports or some other Noble Reason.)
I have treatment goals, and life changing goals from all of this.
Treatment goals this time are radical spinal surgery to remove the arthritic facet joints, remove my spinal disks that are ruptured, and fully fuse my lumbar spine with screws, bone grafts, and rods so that the nerve impingement doesn't get any worse than it already is.
Anyway, this is what is going on right now.