As I sit day after day, awaiting inspiration’s arrival, I have begun to believe it will not arrive… at least not in the form I imagine. My desired muse is to be ushered in on the breath of peace, a wave of love, the flow of freedom. Where is my carefree, pain free day during which I can compose an inspirational message about survival and perseverance? If I was given this affliction for a reason, would it not be to help others through it also? To complete that journey, do I not need to come out on the other side… to witness that this is all for a purpose, a plan? Perhaps it is my own insularity that keeps me blinded from the truth.
More likely it is that on those blessed days I do not feel like sitting at my computer, using what little energy and liberty of spirit I possess, typing an entry for a blog. My good days are not chronicled because I am living them. Who wants to know that I have run a load of laundry on my own, or have gone to the grocery store to choose my own produce? These tasks which were once viewed as menial and every-day are now the very activities I strive to incorporate into my daily existence. It is a good day when I can pretend to be normal, and menial.
Today is a particularly rough day. This week I left my home, in cold weather, three days in a row. The third and longest day was spent in the company of beloved family, mostly in the car, but also included more city walking than my body can now tolerate (maybe 2 city blocks). On each of these days it was important for me to be out of my home, and each time I returned to my bed I knew I would feel the day’s activities in every nerve of my body for days to come… each day compounding the next exponentially. Yesterday I was motionless, leaving my bed perhaps 3 or 4 times all day. It is now 5pm on a Sunday and I have only managed to get myself up once earlier this afternoon.
This punishment I now endure is chosen, for I know the wrath of the beast living inside of me. We are well acquainted after just over a year and a half. Today it consumes my whole body, not just my right foot where it began. Yet I am at peace, as I sit in my gradually darkening bedroom, knowing this time it was my choices that put me in bed for days. I was able to choose the activities important to me. I savor those moments of imagined freedom as I physically escaped my bedroom three glorious days in a row. God blessed me with the time and energy to get to and through my appointed tasks. I was able to engage in conversation, for the most part, and participate in important events. Yes, it was important and worth the pain to make sure my son and I have good, strong, clean teeth. Yes, it was important for me to check in at a doctor’s office. Yes, it was important to spend time with my family traveling to a destination important to them.
Today’s muse arrived in silence, in pain, longing to be released from agony… with the smallest, most beautiful tear resting on its cheek. With this pain comes satisfaction. With this jabbing, searing, aching, poking, slicing, pulling, electric, frozen torture comes the realization that I beat the monster. I was able to be productive, even for a brief moment, while it had its back turned. When the monster roars, I am silent… praying for sleep and more effective pain management tools, and hopefully distracted by the computer. But when it is finally too tired from its rampage through my body, I am in charge… I call the shots… I get to be in control of my own life again… or at least I’m able to pretend.
"As threshing separates the wheat from the chaff, so does affliction purify virtue."
~ Sir Richard Burton
"Everything can be taken from a man but the last of human freedoms, the right to choose one’s attitude in any given set of circumstances - the right to choose one’s own way."
~ Viktor Frankl
"The great art of life is the sensation, to feel that we exist, even in pain."
~ Lord Byron
"In the darkest hour the soul is replenished and given strength to continue and endure."
~ Heart Warrior Chosa
"After great pain, a formal feeling comes. The Nerves sit ceremonious, like tombs." ~ Emily Dickinson
"Life is pain and the enjoyment of love is an anesthetic." ~ Cesare Pavese
"It is easier to find men who will volunteer to die, than to find those who are willing to endure pain with patience." ~ Julius Caesar
"There is no coming to consciousness without pain." ~ Carl Jung
"Pain adds rest unto pleasure, and teaches the luxury of health." ~ Martin Tupper
"Do not undervalue the headache. While it is at its sharpest it seems a bad investment; but when relief begins, the unexpired remainder is worth $4 a minute." ~ Mark Twain
"The space between the tears we cry is the laughter that keeps us coming back for more." ~ Dave Matthews Band
"We cannot learn without pain." ~ Aristotle
"One word frees us of all the weight and pain in life: that word is love." ~ Sophocles
Showing posts with label Depression. Show all posts
Showing posts with label Depression. Show all posts
Sunday, January 17, 2010
Sunday, May 31, 2009
Plans Fall Through? Or Right on Track...
While I’d like to fill a page with glorious, triumphant stories detailing all I’ve done to help promote RSD/CRPS awareness this month, the sad truth is I’ve done very little. Instead of finally ordering those brochures from http://www.rsds.org/ and handing them out to everyone I came in contact with, my month was filled with battling pain, fatigue, depression, doctors, insurance companies and my own tendencies to hide from it all. My goal of posting a new blog entry every few days was replaced with repeat migraines and the spread of RSD into my right side and back. On FaceBook I really wanted to find more facts to list, pictures to share and reasons to fight. At the end of Worldwide RSD/CRPS Awareness Month I can honestly say I’m truly amazed with how little I accomplished. But while feeling imperfect, disabled and vulnerable a miracle happened. Instead of educating others this month, I became the student… learning about compassion, humility and community. For within the jagged barbed wire walls tethering me to this disease a group of angels emerged feeding me encouragement and hope, sharing stories of their trials and successes, holding my hand to let me know I am truly not alone. These genuine, selfless, kindhearted souls fed me life.
I’ve always been a very independent person. When I was younger I was shy and observant, but willingly took on the role of the big sister, the little mom, to my younger siblings. Having my son James at an early age simply encouraged my role as a caretaker. Loving my son James turned me into a momma bear building an impenetrable den around the two of us. My son, family, friends and even my church could always depend on me to organize an outing, move them to another state, be the designated driver, and always be available to listen if they should call. RSD has robbed me of my persona. Not only am I no longer physically able to help with simple household tasks on a routine basis, but the tables have turned making me the one in need, learning how to ask for help and how not to be ashamed in accepting it.
Thank you my wonderful James for all you do. As a 16 year-old boy/young man/teen you should be more worried about friends and activities than chores your mother should not be attempting. The dog is well taken care of, the garbage is always out and you even clean up without prompting. Your dinners are wonderful. God blessed me with allowing me to be your Mom. Ashley, Mom & Gran – although I know it has been difficult for you to watch me in so much pain, you have each managed to find time to drive me to Dr’s appointments and run errands my body would not agree to. Thank you friends, old and new, for visiting. I am so used to running to your homes when you need me that I’ve found I lack the social skills for inviting you to my own. Please visit more! Cards, letters and emails fill my heart with joy. I may not always respond in a timely fashion, but know you have my undying gratitude for even the smallest gesture. I am truly blessed to have each and every one of you in my life. I love you all!
I’ve always been a very independent person. When I was younger I was shy and observant, but willingly took on the role of the big sister, the little mom, to my younger siblings. Having my son James at an early age simply encouraged my role as a caretaker. Loving my son James turned me into a momma bear building an impenetrable den around the two of us. My son, family, friends and even my church could always depend on me to organize an outing, move them to another state, be the designated driver, and always be available to listen if they should call. RSD has robbed me of my persona. Not only am I no longer physically able to help with simple household tasks on a routine basis, but the tables have turned making me the one in need, learning how to ask for help and how not to be ashamed in accepting it.
Thank you my wonderful James for all you do. As a 16 year-old boy/young man/teen you should be more worried about friends and activities than chores your mother should not be attempting. The dog is well taken care of, the garbage is always out and you even clean up without prompting. Your dinners are wonderful. God blessed me with allowing me to be your Mom. Ashley, Mom & Gran – although I know it has been difficult for you to watch me in so much pain, you have each managed to find time to drive me to Dr’s appointments and run errands my body would not agree to. Thank you friends, old and new, for visiting. I am so used to running to your homes when you need me that I’ve found I lack the social skills for inviting you to my own. Please visit more! Cards, letters and emails fill my heart with joy. I may not always respond in a timely fashion, but know you have my undying gratitude for even the smallest gesture. I am truly blessed to have each and every one of you in my life. I love you all!
Saturday, May 2, 2009
An Attempt at Normality
Imagine a beautiful summer day attending a friend’s backyard cookout. The company is great – cross talking about old times, politics and various family hijinks. Kiddos are running around the house chasing each other, playing ball and eventually breaking out into a full fledged water gun fight, at which point some of the guys join in. And food… so much food! Smell the grill, the ribs, the burgers… all mixing with the scent of a neighbor’s fresh cut lawn. The sun gets so warm a bead of sweat forms across your brow as you search for something to fan yourself with. Before you know it half of your body feels like you just walked into a sauna.
Then you realize trying to cool off is a futile attempt. As you look around you’re the only one sweating, besides the male “adults” now chasing children with buckets of water. Perhaps it’s because at least a quarter of your body feels frozen and is wrapped up as if you’re expecting snow at any moment. Or perhaps it’s just the normal sweating you’ll never fully get used to. You push that irritation out of your mind and try to concentrate on the conversation you were just having… only now you have no idea what you were saying, even though the others are still on the same subject. With a glazed over expression you consciously try really, really hard to focus, but it doesn’t help. A beautiful breeze arrives finally cooling your forehead yet causing other areas of your skin to sting and feel raw. Readjusting your blanket or knee sock or arm-length glove to cover the raw spot irritates the rest of your skin that had just settled down. Never letting on how much pain you’re truly in, you eventually find a way back into the laughter. You have to. If you don’t you’ll scream.
In time distractions stop working. In fact, they’re making things worse. You feel the happy voices and laughter tighten the muscles in your shoulders and neck as you withdraw. Sunshine blocked by a hat and sunglasses manages to make your eyes feel tired and dry. The extra pain meds you took to get through the day aren’t helping either. Your leg/arm/back screams to be out of your nice clothes and stretched out in bed. Even though your partner is having a blast they recognize the “look” and help you say your goodbyes.
Home at last you are thankful for the sun, the fresh air, the fabulous company and abundant food. But you’ll think about that more in a few days, when the flare-up you just caused passes. Yes, you knew there would be a price to pay for traveling that half hour in the car, sitting in a lawn chair for a couple of hours, and spending your energy on being social. Fighting off disappointment and depression you adjust back to your reality – this is just how things are, forever… or until they find a cure.
What can you do to help?
Asking questions, being informed and sharing information would be a huge contribution to the RSD/CRPS community. The more educated the general public is about this disease, the more attention it will get. For websites with tons of reader-friendly info try:
RSDSA: http://www.rsds.org
Of course, if you’d like to contribute financially there are several organizations collecting funds for research grants and education. Although I am not currently physically able to participate in either of these walk/run/roll events, I am participating virtually. PLEASE check out:
Then you realize trying to cool off is a futile attempt. As you look around you’re the only one sweating, besides the male “adults” now chasing children with buckets of water. Perhaps it’s because at least a quarter of your body feels frozen and is wrapped up as if you’re expecting snow at any moment. Or perhaps it’s just the normal sweating you’ll never fully get used to. You push that irritation out of your mind and try to concentrate on the conversation you were just having… only now you have no idea what you were saying, even though the others are still on the same subject. With a glazed over expression you consciously try really, really hard to focus, but it doesn’t help. A beautiful breeze arrives finally cooling your forehead yet causing other areas of your skin to sting and feel raw. Readjusting your blanket or knee sock or arm-length glove to cover the raw spot irritates the rest of your skin that had just settled down. Never letting on how much pain you’re truly in, you eventually find a way back into the laughter. You have to. If you don’t you’ll scream.
In time distractions stop working. In fact, they’re making things worse. You feel the happy voices and laughter tighten the muscles in your shoulders and neck as you withdraw. Sunshine blocked by a hat and sunglasses manages to make your eyes feel tired and dry. The extra pain meds you took to get through the day aren’t helping either. Your leg/arm/back screams to be out of your nice clothes and stretched out in bed. Even though your partner is having a blast they recognize the “look” and help you say your goodbyes.
Home at last you are thankful for the sun, the fresh air, the fabulous company and abundant food. But you’ll think about that more in a few days, when the flare-up you just caused passes. Yes, you knew there would be a price to pay for traveling that half hour in the car, sitting in a lawn chair for a couple of hours, and spending your energy on being social. Fighting off disappointment and depression you adjust back to your reality – this is just how things are, forever… or until they find a cure.
What can you do to help?
Asking questions, being informed and sharing information would be a huge contribution to the RSD/CRPS community. The more educated the general public is about this disease, the more attention it will get. For websites with tons of reader-friendly info try:
RSDSA: http://www.rsds.org
American RSD Hope: http://www.rsdhope.org
International RSD Organization: http://www.rsdinfo.com
International Research Foundation for RSD/CRPS: http://www.rsdfoundation.org
Of course, if you’d like to contribute financially there are several organizations collecting funds for research grants and education. Although I am not currently physically able to participate in either of these walk/run/roll events, I am participating virtually. PLEASE check out:
http://www.triumphoverpain.org
My RSDSA fundraiser page:
One of my fellow RSD’ers on FaceBook is hand making bracelets such as these. (I should have mine soon! Can’t wait!) All monies, less her expenses for materials, are being donated directly to RSD organizations. Let me know if you’d like to purchase one of these 14 dollar beauties and I’ll make the connection for you.
However, the absolute best thing you can do to help as an individual person is to support your friends and family members who have RSD. We can’t always attend social gatherings, but a courtesy invite makes us feel wanted. We may not always answer your phone call or email right away, because we’re probably napping. We may not ask for help with everyday routines or chores, but even the smallest gesture means the world to us. Please try to understand that we are stuck inside these hurting bodies and foggy minds with no definite way out. Although pain makes us want to crawl into a hole and hide, we do not want to lose touch with those who we know and love. It is your thoughts, words and actions that help us through the week, day or even hour. Really!
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