Disabled...
I'm not sure if I'm angry at the word or what images it invokes for me. I have spent 2 months fighting this word. And then yesterday, the thread that I was hanging by the keep me from admitting my defeat, admitting that I am disabled, broke and I cried. Tears rolling down my face as I told my wonderful husband that I can no longer do it all, I am no longer Super Woman, and my kryptonite is RSD.
I always thought that if I got everything right I would be able to return to normal, to the person I was before this diagnosis. I was injured in August 2008, and I clung to the hope that I would get fixed and get better. I now know that I will not, and it's painful to say that, because RSD will not allow me to get better. I'm always going to have balance my activities so as to not cause a flare up, nurse myself, be gentle with myself. It frustrates me, and insults me at the same time.
As I journey through this new half of my life, I need to tell you the small changes that come. First it's noticing that you can't wear just any shoe, because you're foot swells as you walk on it, and if there isn't any room in the shoe then it rubs causing blisters and ulcers on the foot. The next thing I noted is that I couldn't just wear anything, jeans felt so heavy on me. It's not an every day thing, on good days I can still wear jeans, but on bad days it's just too painful. So I adjusted, buying sweat pants, lounge pants and other light cotton pants that wouldn't rub and cause pain. Then it's not being to walk for a long time, frequent breaks are required, my cane is needed, and finally I admitted I need a wheelchair to really be able to get out and do things.
Most of the time I'm house bound, I can't drive more then 15 minutes without pain. Luckily I drive an automatic, because I wouldn't be able to work a clutch. My left foot is constantly in pain, it can vary from a numbing burning pain to a sharp stabbing pain. The RSD has spread from my toes and knees up to my hip. I can barely lay on my left side on a good day, and forget about a bad day. On a good day I can be seen walking to and from my son's school with out my cane as I pick him up from Kindergarten. I can not walk the less then ½ a mile from our house to school though, because that would cause a serious flare up and turn a good day into a bad day.
Here I am again waffling into acceptance.... I'm disabled, but I don't want to be disabled. Who wants to be right. My wonderful group of sisters I have found through facebook tell me I am “re-abled” or “differently abled”, but I still found myself labeling myself as disabled, because I can't do what I use to do, and I can't be who I use to be. I am feeling like saying I am disabled is admitting defeat.
Some days I feel defeated.....
Saturday, May 30, 2009
Friday, May 29, 2009
Hoping & Coping with RSD
Coping & Hoping...hmm.. that's where we are at today.
I feel like I'm in mourning, kind of like the way I felt when I lost my Gramp so many years ago. So I look at The Five Stages of Grief. Denial, Anger, Bargaining, Depression and Acceptance.
As my Therapist told me, I was mourning my former life, the loss of my normalcy, the loss of my job, the loss of being in control. I know she's right, I know this what I feel, the loss of being able to move. It's as simple as that. The freedom to move my body and not have pain. I can not walk heel to toe on my left foot, I have extreme sharp and stabbing pain every time I move. When I'm sitting I have an achy pain that goes from my hip to my toes. The burning pain like having your foot too close to the fire or even on fire that licks up my foot into my shin and calf slowly up to my knee.
The McGill Pain Scale goes from 1-50, RSD sits at about 42, amputation of a digit is 40, child birth is a 32. There are some days when I feel like I can manage the pain, those are the days I tell everyone I'm doing okay, and I hear things like “You look good” or “Glad to see your better”, but that's when I start to get depressed, because I know I'm not going to “get better” there is no cure, I'm going to get where I can manage this monster, where I can figure out what works for me, and only me, because that's how this disease works.
Coping also includes how the bills get paid, and this causes the stress level to go up add that to the burning stabbing pain I'm feeling and there are days I don't want to crawl out of bed, everyday I do though, even if it's just to move to the couch where I sit most of the day and feel pain.
Feeling useless, broken and hurting. I don't know if that makes sense, but that's how the days are.
I didn't go through denial, I was glad to know that what I had, what I was feeling had a name. I am angry, I don't bargain, but I feel some serious depression, and I waffle into acceptance at times.
Now all I have is hope, hoping that I can manage this pain, this monster of a disease...Hoping & Coping makes up my day.
I feel like I'm in mourning, kind of like the way I felt when I lost my Gramp so many years ago. So I look at The Five Stages of Grief. Denial, Anger, Bargaining, Depression and Acceptance.
As my Therapist told me, I was mourning my former life, the loss of my normalcy, the loss of my job, the loss of being in control. I know she's right, I know this what I feel, the loss of being able to move. It's as simple as that. The freedom to move my body and not have pain. I can not walk heel to toe on my left foot, I have extreme sharp and stabbing pain every time I move. When I'm sitting I have an achy pain that goes from my hip to my toes. The burning pain like having your foot too close to the fire or even on fire that licks up my foot into my shin and calf slowly up to my knee.
The McGill Pain Scale goes from 1-50, RSD sits at about 42, amputation of a digit is 40, child birth is a 32. There are some days when I feel like I can manage the pain, those are the days I tell everyone I'm doing okay, and I hear things like “You look good” or “Glad to see your better”, but that's when I start to get depressed, because I know I'm not going to “get better” there is no cure, I'm going to get where I can manage this monster, where I can figure out what works for me, and only me, because that's how this disease works.
Coping also includes how the bills get paid, and this causes the stress level to go up add that to the burning stabbing pain I'm feeling and there are days I don't want to crawl out of bed, everyday I do though, even if it's just to move to the couch where I sit most of the day and feel pain.
Feeling useless, broken and hurting. I don't know if that makes sense, but that's how the days are.
I didn't go through denial, I was glad to know that what I had, what I was feeling had a name. I am angry, I don't bargain, but I feel some serious depression, and I waffle into acceptance at times.
Now all I have is hope, hoping that I can manage this pain, this monster of a disease...Hoping & Coping makes up my day.
Thursday, May 28, 2009
"The Day The Music Died...." ~ Don McLean
I wasn't driving my Chevy to the levy, but it was like a life altering moment.
The day my Doctor told me I had RSD, I didn't even know what it was. I had never heard of it, and yet that acronym would have such an impact on my life..one I'm still trying to figure out.
Complex Regional Pain Syndrome (CRPS) or Reflex Sympathetic Dystrophy (RSD) the two are interchangeable, they are the same disease. RSD became CRPS, it's such a squirrelly disease, had to pin down. The effects I have can be totally different from another person suffering the disease, but we all, as I have some to realize have one thing in common, the constant chronic pain.
RSD can be caused from something as simple as a bump, a fall, it doesn't take much, but once you have it, it alters your existence. I started this journey with a dislocated knee, and a surgery to clean up scar tissue that had formed around my knee. My hopes were to get my knee back to 100%, return to work full time, and be able to run, hike, bike, play with my kids, get dressed with out the pain. The day I found out I had RSD that dream slowly began to fall apart.
First came the realization that my knee was as good as it was going to get. I would have to figure out how to do the things I wanted to do with it as it, that is if I could get past the pain I felt to do those things.
Secondly, my dream of returning to work crashed down when I was placed on long term disability and had to "mourn" the loss of my job
I wasn't just mourning the loss of my job, I was mourning the loss of my lovely normal life. I shouldn't miss it though, it had already been eight months since I had been "normal", but I was mourning the dream of returning to normalcy.
I was given medication, and no hope for a cure. A hope of remission if..and a hope for some sort of maybe a kind of normal, but nobody could tell me what that normal would be.
That's possibly the hardest thing about RSD, it's day by day, hour by hour, moment to moment. I may feel good enough to walk without my cane, but then I may need a wheel chair. I might try to walk the mall for a few hours, and the next day not be able to leave my bed. Sleep like the dead for a day and a half and not sleep at all for two... I never know, I can't make plans except to go to the Doctors and physical therapy. The constants in my life.
I rail at myself for being broken, and I feel broken physically, mentally, and emotionally, as I try to live with chronic pain...
Day number~ 61 days since diagnosed
The day my Doctor told me I had RSD, I didn't even know what it was. I had never heard of it, and yet that acronym would have such an impact on my life..one I'm still trying to figure out.
Complex Regional Pain Syndrome (CRPS) or Reflex Sympathetic Dystrophy (RSD) the two are interchangeable, they are the same disease. RSD became CRPS, it's such a squirrelly disease, had to pin down. The effects I have can be totally different from another person suffering the disease, but we all, as I have some to realize have one thing in common, the constant chronic pain.
RSD can be caused from something as simple as a bump, a fall, it doesn't take much, but once you have it, it alters your existence. I started this journey with a dislocated knee, and a surgery to clean up scar tissue that had formed around my knee. My hopes were to get my knee back to 100%, return to work full time, and be able to run, hike, bike, play with my kids, get dressed with out the pain. The day I found out I had RSD that dream slowly began to fall apart.
First came the realization that my knee was as good as it was going to get. I would have to figure out how to do the things I wanted to do with it as it, that is if I could get past the pain I felt to do those things.
Secondly, my dream of returning to work crashed down when I was placed on long term disability and had to "mourn" the loss of my job
I wasn't just mourning the loss of my job, I was mourning the loss of my lovely normal life. I shouldn't miss it though, it had already been eight months since I had been "normal", but I was mourning the dream of returning to normalcy.
I was given medication, and no hope for a cure. A hope of remission if..and a hope for some sort of maybe a kind of normal, but nobody could tell me what that normal would be.
That's possibly the hardest thing about RSD, it's day by day, hour by hour, moment to moment. I may feel good enough to walk without my cane, but then I may need a wheel chair. I might try to walk the mall for a few hours, and the next day not be able to leave my bed. Sleep like the dead for a day and a half and not sleep at all for two... I never know, I can't make plans except to go to the Doctors and physical therapy. The constants in my life.
I rail at myself for being broken, and I feel broken physically, mentally, and emotionally, as I try to live with chronic pain...
Day number~ 61 days since diagnosed
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