It's been so long since I've posted anything. So much time...some things change, but mostly they stay the same as the old saying goes. It's the dead of winter here...another polar vortex, another nasty flare, another week filled with me wondering as I claw my way out of bed "How can I do this? How can I possibly make it through the hour, let alone the day?" The pain is unreal. I just can't explain it to people. I honestly don't want to try to explain it to most. It's too wicked for most to comprehend and for my loved ones I really wouldn't want them to fully understand what it feels like and what I'm going through.
I'm struggling so much with stupid things. Stupid little things that I took for granted pre-RSD. Things like - getting dressed in a flash. Now I take forever to figure out what to wear. Not out of vanity, not because this outfit makes me look hippy or that outfit makes me look "fill in the blank"...no, I take forever because clothes hurt. Clothes hurt where my battery pack is implanted, and when I'm in a big flare, clothes hurt on my legs and arms. So I'll start to try to put on a shirt or a pair of pants and it just feels like concrete or a pair of sandpaper and jagged rocks jeans and nope- off they go. Even yoga pants, sweat pants, you name it, they hurt. It takes forever to find something that doesn't hurt and don't get me started on then finding a shirt, socks and shoes that equally don't hurt. It's an overwhelming task and it makes me just want to curl up in my closet and forget the whole thing. It's just too much for me to accomplish.
Being out in public - anxiety, panic and terror. It's winter too, so it's not just people that I'm terrified of, it's the snow and ice that I've got to deal with as well. When I'm in this much pain I'm in extra high alert mode - getting bumped into when I hurt this much makes me want to scream and my instinct is to shove back. I want to scream. My head is on a swivel and I get sweaty just thinking about having to go someplace with any number of people. It's overwhelming, the grocery store has become my personal war zone and forget preschool pick up - I'm just not able to do that. My husband and mother in law trade off going to the school to usher my daughter out to my waiting car if they are unable to drive her all the way home. I just cannot deal with the congested hallways, ping ponging kids ready to bump into me and parents unaware that I cannot handle being bumped into. I just...melt down thinking about it. Add to that the ice in parking lots, snowy sidewalks and other wintry issues and I just fall apart again. And again. Oh, and did I mention that I fall apart again?
The pain is ramped up so much that my brain is in a constant state of what I call "ping pong". My brain feels like it can never calm down. It's always zinging and it feels like something is just shooting around in there. I also feel like something awful is about to happen...like some sort of doom and gloom is about to drop on my head. My pain therapist said its normal to feel this way when I'm in a flare like I am and in a constant state of pain. Problem is - the small rational part of me knowing this, and the irrational pain engulfed part of me that is otherwised swamped by feelings of impending terror just don't match up. I try to talk myself down from the feelings of terror, but it doesn't work very well. It sucks. I jump, I have have the worst nightmares when I actually do sleep right now and I just...I just want it all to stop. I'm hoping that by getting some of this out "on paper" that it will get out of my head. I'm so tired. I'm exhausted by this pain. I've been getting some naps in - but I'm still so tired from all this pain. I'm just so tired of trying to suffer through winters.
I wish we could move from here. I hate winters. That's easier said than done though. Not to mention where to move to. I know where we lived in the South didn't work for me last time because hurricane season treated me terribly - much like the winteres in the North treat me now. I need to find a happy medium, if there is such a place. I hope there is. I can't handle this.
I want to have hope. I want to believe there is more to life than this. I want to believe that my life will be more than wishing away 6+ months of the year because of how pain-filled those months are. There has to be a better way to live than just simply surviving. This isn't any way to live. I can't believe in this day and age that they can't help me any more than what they have. It's just...it's wrong.
I'm tired of feeling lonely and isolated. I hate that I feel that way- and my husband feels so sad when I tell him that I feel that way- but I do. Not because of anything he's done. He's my bestfriend and he's done so much to make sure I feel loved and happy and taken care of - and he's amazing. I just - feel lonely because he still needs a life outside of these four walls and he has a lot of friends...and when he gets together with them - it really compounds the fact that I have none. I don't have any friends. It makes sense honestly. You can't have friends when you can't get out to make them. I have to stay home, I'm in pain, I can't socialize, I'm not hable to volunteer on school projects, I'm not able to go out with my husband when he's invited to couples things, I can't join a gym, I can't do any of the things that women do to gain friends. I can't go out for drinks, go listen to a band, go for a run - none of that stuff. So...yeah, I'm not making friends, and it makes sense and it's through no fault of my own, it's just life and life with this disease...but it still sucks. It still makes me feel lonely and well...that's just another thing I have to learn to live with when it comes to RSD that I'm struggling with.
Ok, this has taken me forever to try to write. I'm not even sure if it makes sense anymore.
"The More things change the more they stay the same
The more things change the more they stay the same
Ah, is it just me or does anybody see
The improved tomorrow isn't what it used to be"
Bon Jovi
I'm struggling so much with stupid things. Stupid little things that I took for granted pre-RSD. Things like - getting dressed in a flash. Now I take forever to figure out what to wear. Not out of vanity, not because this outfit makes me look hippy or that outfit makes me look "fill in the blank"...no, I take forever because clothes hurt. Clothes hurt where my battery pack is implanted, and when I'm in a big flare, clothes hurt on my legs and arms. So I'll start to try to put on a shirt or a pair of pants and it just feels like concrete or a pair of sandpaper and jagged rocks jeans and nope- off they go. Even yoga pants, sweat pants, you name it, they hurt. It takes forever to find something that doesn't hurt and don't get me started on then finding a shirt, socks and shoes that equally don't hurt. It's an overwhelming task and it makes me just want to curl up in my closet and forget the whole thing. It's just too much for me to accomplish.
Being out in public - anxiety, panic and terror. It's winter too, so it's not just people that I'm terrified of, it's the snow and ice that I've got to deal with as well. When I'm in this much pain I'm in extra high alert mode - getting bumped into when I hurt this much makes me want to scream and my instinct is to shove back. I want to scream. My head is on a swivel and I get sweaty just thinking about having to go someplace with any number of people. It's overwhelming, the grocery store has become my personal war zone and forget preschool pick up - I'm just not able to do that. My husband and mother in law trade off going to the school to usher my daughter out to my waiting car if they are unable to drive her all the way home. I just cannot deal with the congested hallways, ping ponging kids ready to bump into me and parents unaware that I cannot handle being bumped into. I just...melt down thinking about it. Add to that the ice in parking lots, snowy sidewalks and other wintry issues and I just fall apart again. And again. Oh, and did I mention that I fall apart again?
The pain is ramped up so much that my brain is in a constant state of what I call "ping pong". My brain feels like it can never calm down. It's always zinging and it feels like something is just shooting around in there. I also feel like something awful is about to happen...like some sort of doom and gloom is about to drop on my head. My pain therapist said its normal to feel this way when I'm in a flare like I am and in a constant state of pain. Problem is - the small rational part of me knowing this, and the irrational pain engulfed part of me that is otherwised swamped by feelings of impending terror just don't match up. I try to talk myself down from the feelings of terror, but it doesn't work very well. It sucks. I jump, I have have the worst nightmares when I actually do sleep right now and I just...I just want it all to stop. I'm hoping that by getting some of this out "on paper" that it will get out of my head. I'm so tired. I'm exhausted by this pain. I've been getting some naps in - but I'm still so tired from all this pain. I'm just so tired of trying to suffer through winters.
I wish we could move from here. I hate winters. That's easier said than done though. Not to mention where to move to. I know where we lived in the South didn't work for me last time because hurricane season treated me terribly - much like the winteres in the North treat me now. I need to find a happy medium, if there is such a place. I hope there is. I can't handle this.
I want to have hope. I want to believe there is more to life than this. I want to believe that my life will be more than wishing away 6+ months of the year because of how pain-filled those months are. There has to be a better way to live than just simply surviving. This isn't any way to live. I can't believe in this day and age that they can't help me any more than what they have. It's just...it's wrong.
I'm tired of feeling lonely and isolated. I hate that I feel that way- and my husband feels so sad when I tell him that I feel that way- but I do. Not because of anything he's done. He's my bestfriend and he's done so much to make sure I feel loved and happy and taken care of - and he's amazing. I just - feel lonely because he still needs a life outside of these four walls and he has a lot of friends...and when he gets together with them - it really compounds the fact that I have none. I don't have any friends. It makes sense honestly. You can't have friends when you can't get out to make them. I have to stay home, I'm in pain, I can't socialize, I'm not hable to volunteer on school projects, I'm not able to go out with my husband when he's invited to couples things, I can't join a gym, I can't do any of the things that women do to gain friends. I can't go out for drinks, go listen to a band, go for a run - none of that stuff. So...yeah, I'm not making friends, and it makes sense and it's through no fault of my own, it's just life and life with this disease...but it still sucks. It still makes me feel lonely and well...that's just another thing I have to learn to live with when it comes to RSD that I'm struggling with.
Ok, this has taken me forever to try to write. I'm not even sure if it makes sense anymore.
"The More things change the more they stay the same
The more things change the more they stay the same
Ah, is it just me or does anybody see
The improved tomorrow isn't what it used to be"
Bon Jovi
