One thing that can be very tricky with RSD/CRPS is the weight of pain that is never ending. The pain shifts and changes, some days I feel like I'm tethered to an anchor and being pulled down to the darkest depths of the ocean floor, other days it's a dark cloud that follows me around blotting out my sunshine as they swirl and gather- bothersome but manageable.
As I've gone through doctors and treatments and the inevitable ups and downs associated with this beast, I have discovered one thing about my personality - I thankfully do not have an addictive personality. It's both baffling and mind blowing to me how many opioids and other crazy drugs they throw at your system in an effort to make something stick on the wall so to speak. That said, it's already well documented that opioids don't do anything for neuropathic pain. I've been fuzzed to within an inch of my life it felt like. I remember crying to my husband- then boyfriend- and telling him that I couldn't handle what they were doing to me. The meds that they had put me on made me feel like Anna Nicole Smith. I phoned into work and slurred my way through an explanation to my boss about a bad reaction to a new med for my RSD and thank god they told me to stay home and hang in there. They were a supportive group at that particular University and I was lucky to have them in my corner. I pulled myself off the drug against doctors orders and never looked back. Being blitzed out of my mind wasn't how I wanted to deal with the crushing pain. While I don't welcome the pain, I certainly don't want to miss out on life as an alternative.
While dealing with pain is difficult in itself, trying to discuss pain with others is another tricky obstacle to navigate. I've found myself struggling to explain how I'm experiencing my pain, how it feels to me on a particular day. I hate the pain ratings that I'm asked to give at the beginning of each doctors appointment. "How would you rate your pain today on a scale of 1 to 10" they ask. It's such a worthless question to be honest.. I loathe that question. I always rate my pain less than what I feel. I don't want to appear a whiny and whingy girl, not to mention you have to save your big numbers for when you are truly dire. As in close to wanting to die and not being able to hold on anymore. I usually figure, well, I haven't jumped off the parking deck on my way here, so I'll give myself a solid 5. Doing good doc. I then find myself rolling my eyes and snarling at my computer screen when I see the in depth photos and detailed messages on FB of some "horrible" tumble that someone has taken. "Pardon?" I think. I'll squint, look again and scoff, I wouldn't waste a Hello Kitty bandaid on that. Stop embarrassing yourself and suck it up! I went through natural childbirth and a childbirth with an epidural, ask me to rate both on a scale of 1 to 10. Well bugger off, it's an impossible rating system. If you're an Office fan, I always think back to the rating system that Michael gives on the Beach Day episode when trying to pick out a new manager.
Michael "Ah...who's ahead in points?"
Pam: "I think they're even. At various times you gave Jim 10 points, Dwight a gold star, and Stanley a thumbs up. And I don't really know how to compare these units."
Michael: "Check the back to see if there's a conversion."
That sums up just about every doctors visit. Let me try to translate these crazy feelings and horrible things inside my body to try to make you understand and oh, while I'm at it, let me put it into a numeric scale for you, maybe even with little happy/sad faces to go with.
Pain is a terribly isolating thing. It makes getting out of your home difficult. Both physically and mentally. It can be so difficult to physically move, to try to experience all of the stimuli in the environment, to focus on what is going on around you while your brain is on fire sending a million mixed up signals and most of them the nasty no good kind. Spending so much time in your closet trying to find something to wear, not because you are going to be fashionable, because that went out the window a long time ago. No, you take forever to get ready because fabrics hurt, waistbands are tricky with how they lay against the internal battery pack and wires that are now implanted in your body. Simple leggings feel like sandpaper and lighter fluid on your skin. Finding the right combination of fabric and flow takes some doing. Don't get me started on footwear. My darling strappy heels of days gone past are but a twinkle in my eye. I spent my youth twirling in my grandmothers heels. She was a real fashion plate and I loved a good high heel. Today I have to look for a sturdy foot bed, soft leather, nothing too tight around the ankle bone where most of the pins are. Jealous yet? All of this leads to a lot of days that are just pajama days. Soft fabrics that don't stress my body out. Not glamorous and certainly nothing I'd go out in public in. I have given up a lot in life but I do have some standards still. This had led to so much isolation. It's hard to stay to connected to friends when you can't even stand to get dressed. It's hard to attend a girls evening when, even if I can work out an outfit for the evening, I have to navigate a bar situation. Most people don't even think about it. It's drinks! Hooray! Me? Is there going to be live music or loud music - that bass line hurts as it cuts through my body. What's the seating situation going to be like? Chairs can be tricky but open backed seating or standing can be even more dangerous. Having my back and ankle exposed leave me open to people touching my back as they pass by or bumping my ankle as they step through. Both actions are minimal to others but feel like a brutal punch or like lightning bolts to me. My brain is overwhelmed trying to stay alert for potential danger and people bumping into me that I can't even process conversations properly. I'm left with a time delay in my speech and feel out of the loop as I struggle to both follow along with the group and process my environment. The very thought is both too overwhelming to attempt and at the same time something I very much don't want to miss out on.
I miss the old me. I miss the carefree me. I miss happily plunging into a crowd and dancing around to the thump of live music. Being able to hold onto the hand of my guy and squeeze behind in a crowd, free from worry about how someone may bump against my skin. I miss the feeling of running behind and being able to simply vault up a flight of stairs two at a time. There are so many things in life you take for granted when you can simply do them. I'm trying to make sure that I stop and appreciate what all I can do now. That I appreciate what this battered and broken body still does for me. Because I know like a worn out clock, I am slowing down. I am struggling more, yet there are still a lot of things that I am able to do. I want to appreciate them while I can. I want to drink it in. I don't know that I fully appreciated the last time that I could many of the little things that I miss. I'm trying to make sure that I appreciate all that I do have now. Some days that is easier said than others. Many people don't understand why I am what they perceive as withdrawn or changed. But then, I get it. I only go out in public when it is a good day for me. They don't see me at my worst. They don't see how horrible it truly is for me. It's hard to understand what my life is really like. I'm going to grant myself and others some grace here. It's ok that I'm not able to do what I had done before, that I can't be the person I once was and wished I still was. It's ok that others misunderstand me. That I have fallen out of the friend group. It's life. It's all different seasons. Some are just a but sunnier than others.
"You say I'm cold
I'm just not the same
As I was a year ago
And each minute since then"
Set Down Your Glass - Snow Patrol
As I've gone through doctors and treatments and the inevitable ups and downs associated with this beast, I have discovered one thing about my personality - I thankfully do not have an addictive personality. It's both baffling and mind blowing to me how many opioids and other crazy drugs they throw at your system in an effort to make something stick on the wall so to speak. That said, it's already well documented that opioids don't do anything for neuropathic pain. I've been fuzzed to within an inch of my life it felt like. I remember crying to my husband- then boyfriend- and telling him that I couldn't handle what they were doing to me. The meds that they had put me on made me feel like Anna Nicole Smith. I phoned into work and slurred my way through an explanation to my boss about a bad reaction to a new med for my RSD and thank god they told me to stay home and hang in there. They were a supportive group at that particular University and I was lucky to have them in my corner. I pulled myself off the drug against doctors orders and never looked back. Being blitzed out of my mind wasn't how I wanted to deal with the crushing pain. While I don't welcome the pain, I certainly don't want to miss out on life as an alternative.
While dealing with pain is difficult in itself, trying to discuss pain with others is another tricky obstacle to navigate. I've found myself struggling to explain how I'm experiencing my pain, how it feels to me on a particular day. I hate the pain ratings that I'm asked to give at the beginning of each doctors appointment. "How would you rate your pain today on a scale of 1 to 10" they ask. It's such a worthless question to be honest.. I loathe that question. I always rate my pain less than what I feel. I don't want to appear a whiny and whingy girl, not to mention you have to save your big numbers for when you are truly dire. As in close to wanting to die and not being able to hold on anymore. I usually figure, well, I haven't jumped off the parking deck on my way here, so I'll give myself a solid 5. Doing good doc. I then find myself rolling my eyes and snarling at my computer screen when I see the in depth photos and detailed messages on FB of some "horrible" tumble that someone has taken. "Pardon?" I think. I'll squint, look again and scoff, I wouldn't waste a Hello Kitty bandaid on that. Stop embarrassing yourself and suck it up! I went through natural childbirth and a childbirth with an epidural, ask me to rate both on a scale of 1 to 10. Well bugger off, it's an impossible rating system. If you're an Office fan, I always think back to the rating system that Michael gives on the Beach Day episode when trying to pick out a new manager.
Michael "Ah...who's ahead in points?"
Pam: "I think they're even. At various times you gave Jim 10 points, Dwight a gold star, and Stanley a thumbs up. And I don't really know how to compare these units."
Michael: "Check the back to see if there's a conversion."
That sums up just about every doctors visit. Let me try to translate these crazy feelings and horrible things inside my body to try to make you understand and oh, while I'm at it, let me put it into a numeric scale for you, maybe even with little happy/sad faces to go with.
Pain is a terribly isolating thing. It makes getting out of your home difficult. Both physically and mentally. It can be so difficult to physically move, to try to experience all of the stimuli in the environment, to focus on what is going on around you while your brain is on fire sending a million mixed up signals and most of them the nasty no good kind. Spending so much time in your closet trying to find something to wear, not because you are going to be fashionable, because that went out the window a long time ago. No, you take forever to get ready because fabrics hurt, waistbands are tricky with how they lay against the internal battery pack and wires that are now implanted in your body. Simple leggings feel like sandpaper and lighter fluid on your skin. Finding the right combination of fabric and flow takes some doing. Don't get me started on footwear. My darling strappy heels of days gone past are but a twinkle in my eye. I spent my youth twirling in my grandmothers heels. She was a real fashion plate and I loved a good high heel. Today I have to look for a sturdy foot bed, soft leather, nothing too tight around the ankle bone where most of the pins are. Jealous yet? All of this leads to a lot of days that are just pajama days. Soft fabrics that don't stress my body out. Not glamorous and certainly nothing I'd go out in public in. I have given up a lot in life but I do have some standards still. This had led to so much isolation. It's hard to stay to connected to friends when you can't even stand to get dressed. It's hard to attend a girls evening when, even if I can work out an outfit for the evening, I have to navigate a bar situation. Most people don't even think about it. It's drinks! Hooray! Me? Is there going to be live music or loud music - that bass line hurts as it cuts through my body. What's the seating situation going to be like? Chairs can be tricky but open backed seating or standing can be even more dangerous. Having my back and ankle exposed leave me open to people touching my back as they pass by or bumping my ankle as they step through. Both actions are minimal to others but feel like a brutal punch or like lightning bolts to me. My brain is overwhelmed trying to stay alert for potential danger and people bumping into me that I can't even process conversations properly. I'm left with a time delay in my speech and feel out of the loop as I struggle to both follow along with the group and process my environment. The very thought is both too overwhelming to attempt and at the same time something I very much don't want to miss out on.
I miss the old me. I miss the carefree me. I miss happily plunging into a crowd and dancing around to the thump of live music. Being able to hold onto the hand of my guy and squeeze behind in a crowd, free from worry about how someone may bump against my skin. I miss the feeling of running behind and being able to simply vault up a flight of stairs two at a time. There are so many things in life you take for granted when you can simply do them. I'm trying to make sure that I stop and appreciate what all I can do now. That I appreciate what this battered and broken body still does for me. Because I know like a worn out clock, I am slowing down. I am struggling more, yet there are still a lot of things that I am able to do. I want to appreciate them while I can. I want to drink it in. I don't know that I fully appreciated the last time that I could many of the little things that I miss. I'm trying to make sure that I appreciate all that I do have now. Some days that is easier said than others. Many people don't understand why I am what they perceive as withdrawn or changed. But then, I get it. I only go out in public when it is a good day for me. They don't see me at my worst. They don't see how horrible it truly is for me. It's hard to understand what my life is really like. I'm going to grant myself and others some grace here. It's ok that I'm not able to do what I had done before, that I can't be the person I once was and wished I still was. It's ok that others misunderstand me. That I have fallen out of the friend group. It's life. It's all different seasons. Some are just a but sunnier than others.
"You say I'm cold
I'm just not the same
As I was a year ago
And each minute since then"
Set Down Your Glass - Snow Patrol
