Crash and burn
Been hit by a truck
Been put through the blender
Been put through the spin cycle
These are descriptions people use when their bodies hurt from head to toe, and how I usually feel from dawn till dusk
If I could pick a storybook character that I most resemble, it would be the princess in "Princess and the Pea". Being sensitive to the touch is not something new, I've experienced it as long as I can remember. I have had the uncanny ability to feel a wrinkle on my bedsheets or the seams in my cloths all my life. My former husband nicknamed me "Princess and the pea" very shortly after we were married.
Since my dysautonomia diagnosis, my sensitivity to touch has multiplied a hundred fold, and in the past month it has become even more pronounced. I wake up in the morning feeling like I've been hit by a truck, but I push through work and find the ability to mentally ignore the pain until I get home . I often look at different parts of my body for bruises that aren't there.
I was feeling pretty beat up one day last week, and headed for my bath, I went to grab my favorite washcloth, the one that is so soft it feels like a baby chick, and noticed it wasn't as soft as before. The disappointment surprised me, so I began to mull it over while I was soaking in the tub, and realized that I get very little positive physical experiences any more. Dysautonomiahas unfortunately stolen many things that give me pleasure, working out, shopping, gardening, singing, even cleaning makes me smile. Feeling the softness of that washcloth feels wonderful and makes me smile. I realized then that I needed to start filling my life with those small things that make me feel good. I began making a list.
1. Softy washcloths
2. Softy socks
3. Vanilla scented bath salts
4. Mango scented body butter
5. The smell of coffee brewing
6. Pistachio gelato
7. Dark chocolate dipped pretzel
8. The sound of rain
9.The sound of my water fountain
10. My garden when the birds and insects are weaving in and out of the flowers
11. The feeling of my dog Elmo curled up next to me
These are all things that are easy to include in my life every day. But for some reason I always had an excuse for not getting what I need. Family needs or energy spent to get those thing has hindered me every time. I am realizing that those things are my rainbow after the storm. I deserve the little things that make life more tolerable.
This weekend I found a way to get everything on my list. I explained to my children why I was sending them out on my own personal treasure hunt, and they responded with huge smiles on their faces. We all deserve the little things that make life enjoyable, God didn't create cotton or scents by accident, they were designed to enjoy. Even if you don't have an illness, it's important to fill your life with the things that make you smile, so you can be more joyful around those you love. Don't forget to pamper yourself, you and those around you deserve it.
Always inspired,
Michele
Sunday, March 28, 2010
Saturday, March 20, 2010
Friendship and Chronic Illness
Having a disease like dysautonomia can make it easy to be angry and play the blame game. This disease has taken so much away from me, and if you have read my blogs, I surely don't need to list them. When I first thought about writing a blog on friendship a month ago, it would have been other directed. I would have cast blame on friends no longer in my life (or barely there). I would have totally blamed this disease, and never cast the blame on the one most responsible, MYSELF! But I can't lay total blame on dysautonomia or my friends for my isolation. Isolation is a choice, a choice only I can be held responsible for.
This disease can definitely rain on your friendship parade. Working makes me too pooped to do anything else. Weekends for me are spent re cooping from the previous week and building up my strength to go to work the next week. Phone calls are difficult, holding the phone to my ear for more than five minutes is painful (and I don't believe in speaker phone, it's a privacy thing). It's hard to make future plans when I don't know how I'm going to feel at any given time. The meds I'm on can make me a bit sullen and uncommunicative. Then there is the fact that when I am out with friends, I often have to cut it short because I am too tired to continue. There's also the tricky business of having friends over, and telling them they need to leave, because I need to go to bed (what kind of friend is that?).Then there's that voice in my head that whispers little lies such as "you've become quite boring since you got sick" or "who wants to hang out with a couch potato" or "if you call and ask them over, I'm sure they have better things to do than sit with you!" Now some of these things may be true, but believing these lies only fuels the fire of self doubt, and makes that deep hole of isolation even more difficult to climb out of.
To be totally honest, friendship involves some work. It involves time, commitment and communication. And all of these take some energy on my part, and energy is the one thing of which I have so little of, and it is this lack of energy that often derails the friendship train. For me it's easy to allow lethargy to take over, to remain in isolation, which makes it easier to forget what it's like to experience special moments with friends.
It would be very easy for me to submit to a life of isolation, to accept it as my new normal, like everything else I've learned to accept since my dysautonomia diagnosis. But thankfully there is another voice that speaks louder than the self doubt. A strong voice of determination for what I really need. I wasn't placed here on this earth to be in isolation. I'm meant to be connected with others. I'm at my weakest when I'm alone and vulnerable, I'm stronger in unity with others. It's not just for my sanity, but for theirs as well. My choice to isolate myself hurts them as well, it robs them of the purpose I was placed in their lives for, to be their friend.
What I'm learning from this, is that my true friends will sit with the couch potato, they won't baulk when I have to leave early, and they will only want what's best for me, if I send them home early. The fair weather friends will do exactly as the voices of doubt said they would, and those are not my friends. In order to have friends I need to be one, and joyfully invest the energy to be with them, and reap the rewards of my small investment.
Inspired,
Michele
P.S. I'm thankful for this outlet to express the areas in my life I'm struggling with. It often forces me to seek solutions to these problems that I wasn't ready to deal with until I decided to blog them. Thank you for your continued support and encouragement, without it, I would probably be floundering in self pity and doubt.
This disease can definitely rain on your friendship parade. Working makes me too pooped to do anything else. Weekends for me are spent re cooping from the previous week and building up my strength to go to work the next week. Phone calls are difficult, holding the phone to my ear for more than five minutes is painful (and I don't believe in speaker phone, it's a privacy thing). It's hard to make future plans when I don't know how I'm going to feel at any given time. The meds I'm on can make me a bit sullen and uncommunicative. Then there is the fact that when I am out with friends, I often have to cut it short because I am too tired to continue. There's also the tricky business of having friends over, and telling them they need to leave, because I need to go to bed (what kind of friend is that?).Then there's that voice in my head that whispers little lies such as "you've become quite boring since you got sick" or "who wants to hang out with a couch potato" or "if you call and ask them over, I'm sure they have better things to do than sit with you!" Now some of these things may be true, but believing these lies only fuels the fire of self doubt, and makes that deep hole of isolation even more difficult to climb out of.
To be totally honest, friendship involves some work. It involves time, commitment and communication. And all of these take some energy on my part, and energy is the one thing of which I have so little of, and it is this lack of energy that often derails the friendship train. For me it's easy to allow lethargy to take over, to remain in isolation, which makes it easier to forget what it's like to experience special moments with friends.
It would be very easy for me to submit to a life of isolation, to accept it as my new normal, like everything else I've learned to accept since my dysautonomia diagnosis. But thankfully there is another voice that speaks louder than the self doubt. A strong voice of determination for what I really need. I wasn't placed here on this earth to be in isolation. I'm meant to be connected with others. I'm at my weakest when I'm alone and vulnerable, I'm stronger in unity with others. It's not just for my sanity, but for theirs as well. My choice to isolate myself hurts them as well, it robs them of the purpose I was placed in their lives for, to be their friend.
What I'm learning from this, is that my true friends will sit with the couch potato, they won't baulk when I have to leave early, and they will only want what's best for me, if I send them home early. The fair weather friends will do exactly as the voices of doubt said they would, and those are not my friends. In order to have friends I need to be one, and joyfully invest the energy to be with them, and reap the rewards of my small investment.
Inspired,
Michele
P.S. I'm thankful for this outlet to express the areas in my life I'm struggling with. It often forces me to seek solutions to these problems that I wasn't ready to deal with until I decided to blog them. Thank you for your continued support and encouragement, without it, I would probably be floundering in self pity and doubt.
Friday, March 12, 2010
Chronic Pain Drain
The reality of my chronic pain came to the surface this week when I snapped at my 23 year old son over the laundry. If you know anything about me, I'm a pretty easy going gal. I don't lose my temper, I think before I speak, and when I do speak it's pretty well thought out. There is no purpose or sane reason behind raising my voice over something as simple as the laundry. After I left the wrath of Mount St. Helen's spewed all over my now shocked and peeved son, I had to evaluate what could have possibly brought me to that uncharacteristic snapping point. I began to make a list.
1. My wet laundry is sitting on the floor, and my sons laundry is bouncing happily in the dryer.
2. Every task is twice as hard as it use to be, and I need to finish the laundry while I still have some strength left in me.
3. Nausiated (most of the day, every day)
4. Dizzy (off and on all day)
5. Tired (always)
6. Short of breath
7. Tachycardia
8. My body hurts all the time, and it's zapping every ounce of energy I have.
In dealing with my more severe symptoms of dysautonomia, I had ignored the fact that I am in constant pain all the time. If I could discribe how I feel, I would have to say it's how how your body feels when you have the flu. Add the feeling of being tense (the calgon, take me away, kind of tense) in every muscle in your body. The other day a student wanted to get my attention and began poking my leg with her tiny finger, it felt like I was being poked by a cattle prod. Well, being in constant pain and fatigue is sooner or later going to creep into your personal life. And for me, my recent blow up on my son, was a wake up call to come up with a plan for dealing with this pain.
1. I needed to check with my doctor to see what can be done for the pain. In my case, I also have arthritis, so the doctor wants to attack the joint pain with anti-inflammitories. If that doesn't work, pain pills will be his next plan, which I will then look for another opinion, masking the pain doesn't cure the underlying issue in my opinion.
2. Listen to my body when it is in pain, and give it the much needed rest it's crying out for.
3. When I am in pain, delegate tasks to those with more healthier bodies in my household. I hate asking for help, but I hate hurting my family members hearts with sharp words caused by pain that could have been avoided if I just asked for some help in the first place.
4. When I feel like I'm ready to lose my temper, I need to take a moment alone to reflect on what's causing the anger. This advice is good for everyone, In my recovery group (I have an eating disorder), when we are ready to fall into unhealthy habits we do a H.E.A.R.T. check, and ask ourselves these questions. Am I Hurting? Am I Exhausted? Am I Angry? Am I Resentful? Am I Tense? If the answer is yes to any of those questions, then you need to ask why, and work through the reason. This works for physical and emotional pain.
5. If I lose my temper, I need to work through the H. E.A.R.T. check and discuss it with the person I just hurt.
Hopefully if I work through this plan, my family will experience a much more pleasant mom, and I will reap the benefits of working through the symptoms that effet my life daily.
When living with a disease like dysautonomia that has many symptoms, I have a tendency to focus on the symptom that has the greatest physical threat to my body. Unfortuanately in doing so I usually ignore other symptoms that may be threatening as well. I am now keeping a simple journal with my symptoms and how they effect my lifestyle. I will then have something to bring in to doctors visits that will hopefully give the doctor a better idea of everythng I'm experiencing and how to best treat my disease and its symptoms. And I will also have a better understanding of how each symptom effects different parts of my life.
Always inspired,
Michele
1. My wet laundry is sitting on the floor, and my sons laundry is bouncing happily in the dryer.
2. Every task is twice as hard as it use to be, and I need to finish the laundry while I still have some strength left in me.
3. Nausiated (most of the day, every day)
4. Dizzy (off and on all day)
5. Tired (always)
6. Short of breath
7. Tachycardia
8. My body hurts all the time, and it's zapping every ounce of energy I have.
In dealing with my more severe symptoms of dysautonomia, I had ignored the fact that I am in constant pain all the time. If I could discribe how I feel, I would have to say it's how how your body feels when you have the flu. Add the feeling of being tense (the calgon, take me away, kind of tense) in every muscle in your body. The other day a student wanted to get my attention and began poking my leg with her tiny finger, it felt like I was being poked by a cattle prod. Well, being in constant pain and fatigue is sooner or later going to creep into your personal life. And for me, my recent blow up on my son, was a wake up call to come up with a plan for dealing with this pain.
1. I needed to check with my doctor to see what can be done for the pain. In my case, I also have arthritis, so the doctor wants to attack the joint pain with anti-inflammitories. If that doesn't work, pain pills will be his next plan, which I will then look for another opinion, masking the pain doesn't cure the underlying issue in my opinion.
2. Listen to my body when it is in pain, and give it the much needed rest it's crying out for.
3. When I am in pain, delegate tasks to those with more healthier bodies in my household. I hate asking for help, but I hate hurting my family members hearts with sharp words caused by pain that could have been avoided if I just asked for some help in the first place.
4. When I feel like I'm ready to lose my temper, I need to take a moment alone to reflect on what's causing the anger. This advice is good for everyone, In my recovery group (I have an eating disorder), when we are ready to fall into unhealthy habits we do a H.E.A.R.T. check, and ask ourselves these questions. Am I Hurting? Am I Exhausted? Am I Angry? Am I Resentful? Am I Tense? If the answer is yes to any of those questions, then you need to ask why, and work through the reason. This works for physical and emotional pain.
5. If I lose my temper, I need to work through the H. E.A.R.T. check and discuss it with the person I just hurt.
Hopefully if I work through this plan, my family will experience a much more pleasant mom, and I will reap the benefits of working through the symptoms that effet my life daily.
When living with a disease like dysautonomia that has many symptoms, I have a tendency to focus on the symptom that has the greatest physical threat to my body. Unfortuanately in doing so I usually ignore other symptoms that may be threatening as well. I am now keeping a simple journal with my symptoms and how they effect my lifestyle. I will then have something to bring in to doctors visits that will hopefully give the doctor a better idea of everythng I'm experiencing and how to best treat my disease and its symptoms. And I will also have a better understanding of how each symptom effects different parts of my life.
Always inspired,
Michele
Monday, March 1, 2010
e doesn't=mc2, e=mom of two
I'm not Michele the science gal, but I do know that my body does not follow the laws of energy produced, nor does my body follow the laws of gravity. If Albert Einstein or Isaac Newton were alive today I'm sure I'd be in deep doo-doo for questioning their historic theories. But they're not, and its MY blog, and I can say whatever I want. My body stopped following the laws of gravity two years ago, and because my body works oober hard defying the laws of energy just to pump blood to my head, any laws on energy and mass no longer pertain to me.
About a year ago I read a great blog by someone with Lupus, called the spoon theory (I highly recommend it), which explains the difference in the amount of energy it takes for someone with an illness similar to mine, compared to the average person. I have my own comparison, I've named it "young mom of two". I figure most people know what it's like to carry a crying baby for a long period of time, and if you haven't had that experience, then pretend you're carrying two heavy bags of potatoes and your mate is yelling at you non-stop for 45 minutes!
Imagine you're a young mom of two, one child is 9 months and 22 pounds, the second child is 3 years old and weighs 34 pounds. Now imagine you need to get ready for work, and dear husband has left the childcare task to you. You have a presentation to give to the big wigs in your company. You have 45 minutes to get yourself and your precious children ready. So you're getting ready to put make-up on when the 9 month old gets fussy and begins to cry. You pick her up and rest her on your hip and continue to try to apply your make-up, while trying to rock and sooth her. The 9 month old continues screaming and has spit up on your new suit, your arm is aching. And now your three year old is whining for attention, you are now tense and frazzled. The 3 year old begins to scream, so you run for the baby back pack, and slip the 9 month old in, and grab the 3 year old and rest him on the hip that previously was taken by the 9 month old. You try to rock, sway and hush the screaming children, but nothing seems to calm them down. You have finally managed to apply a meager amount of make-up, your swept up hair style is falling in your face, your exhausted and ready to cry. You realize you still need to blow up a dozen balloons for the presentation at work. You're still holding both whining children, and you begin blowing up the balloons, first one is done, and you begin to feel like you may make it out the door on time. After about 5 balloons, you are out of breath, your arms are aching from holding the two children, and you continue to blow! By the tenth balloon, you are dizzy and about to pass out. You complete the last balloon, the world is spinning, but you know you have to get the kids dressed. You've dressed the children who are not cooperative, and head for the door. You realize you haven't had a thing for breakfast, so you run to the fridge for a quick swig from the milk carton (I know it's gross, but desperate times need desperate measures). After about the second swig you realize the milk has gone sour, but it's too late you've already swallowed (ewwww). As you grab the kids to leave, you're arms and body are fatigued from carrying the children, you are dizzy from blowing up all those balloons, and ready to barf from the sour milk. You contemplate calling it a day, but you catch your breath, and head out the door. It turns out to be a normal day at work. Your presentation went great, and they loved the balloons!
Having dysautonomia, makes my morning routine quite similar to "young mom of two". Just getting out of bed in the morning sometimes feels like I have blown up a dozen balloons. Applying make-up often feels like carrying two unhappy babies for a long duration. The nausea, is a daily occurrence that I still haven't gotten use to it. The only difference between me and "young mom of two", is that one unexpected task or running a few minutes late could send me to bed for the day. It still amazes me that a simple task like putting on make-up that used no energy for me before dysautonomia, now with dysautonomia the amount of energy I use is mind blowing. Miranda (a fellow dysautonomia friend and mom of two young girls) I don't know how you do it!
Just finished flipping pancakes, I think I need a nap!
Always inspired,
Michele
About a year ago I read a great blog by someone with Lupus, called the spoon theory (I highly recommend it), which explains the difference in the amount of energy it takes for someone with an illness similar to mine, compared to the average person. I have my own comparison, I've named it "young mom of two". I figure most people know what it's like to carry a crying baby for a long period of time, and if you haven't had that experience, then pretend you're carrying two heavy bags of potatoes and your mate is yelling at you non-stop for 45 minutes!
Imagine you're a young mom of two, one child is 9 months and 22 pounds, the second child is 3 years old and weighs 34 pounds. Now imagine you need to get ready for work, and dear husband has left the childcare task to you. You have a presentation to give to the big wigs in your company. You have 45 minutes to get yourself and your precious children ready. So you're getting ready to put make-up on when the 9 month old gets fussy and begins to cry. You pick her up and rest her on your hip and continue to try to apply your make-up, while trying to rock and sooth her. The 9 month old continues screaming and has spit up on your new suit, your arm is aching. And now your three year old is whining for attention, you are now tense and frazzled. The 3 year old begins to scream, so you run for the baby back pack, and slip the 9 month old in, and grab the 3 year old and rest him on the hip that previously was taken by the 9 month old. You try to rock, sway and hush the screaming children, but nothing seems to calm them down. You have finally managed to apply a meager amount of make-up, your swept up hair style is falling in your face, your exhausted and ready to cry. You realize you still need to blow up a dozen balloons for the presentation at work. You're still holding both whining children, and you begin blowing up the balloons, first one is done, and you begin to feel like you may make it out the door on time. After about 5 balloons, you are out of breath, your arms are aching from holding the two children, and you continue to blow! By the tenth balloon, you are dizzy and about to pass out. You complete the last balloon, the world is spinning, but you know you have to get the kids dressed. You've dressed the children who are not cooperative, and head for the door. You realize you haven't had a thing for breakfast, so you run to the fridge for a quick swig from the milk carton (I know it's gross, but desperate times need desperate measures). After about the second swig you realize the milk has gone sour, but it's too late you've already swallowed (ewwww). As you grab the kids to leave, you're arms and body are fatigued from carrying the children, you are dizzy from blowing up all those balloons, and ready to barf from the sour milk. You contemplate calling it a day, but you catch your breath, and head out the door. It turns out to be a normal day at work. Your presentation went great, and they loved the balloons!
Having dysautonomia, makes my morning routine quite similar to "young mom of two". Just getting out of bed in the morning sometimes feels like I have blown up a dozen balloons. Applying make-up often feels like carrying two unhappy babies for a long duration. The nausea, is a daily occurrence that I still haven't gotten use to it. The only difference between me and "young mom of two", is that one unexpected task or running a few minutes late could send me to bed for the day. It still amazes me that a simple task like putting on make-up that used no energy for me before dysautonomia, now with dysautonomia the amount of energy I use is mind blowing. Miranda (a fellow dysautonomia friend and mom of two young girls) I don't know how you do it!
Just finished flipping pancakes, I think I need a nap!
Always inspired,
Michele
Saturday, February 27, 2010
Pray Without Ceasing
Being a Christian with dysautonomia gives me the opportunity to look at my disease as a way to see how God wants me to learn from the experiences of this disease. To be honest, there are times when the symptoms of this disease make that a bit difficult (I'm sure you've seen some of the frustration in these blogs). I do have to say, that I NEVER experience brainfog while praying. Those names and details are always quite clear. I sometimes wonder if I was always in prayer, that maybe I'll never experience brainfog again! I can just imagine how that might sound as I'm teaching, "Oh Lord help my students grasp the concept of addition, help them to remember that if they add two items and three items they might want to use their fingers or objects to make that concept clearer." I think I'll have to give that idea a little more thought, and conversations with people might need a little more creative thinking as well.
Prayer has always played an important role for me as a Christian. It's pretty easy for me to pray for my close friends, people on the prayer chain at my church, and the woman I have become friends with through dysautonomia and facebook. My chair in front of my computer has become a regular place of prayer for me as I daily hear of the pain and struggles of these brave woman and men with this disease. It's easy for me to relate to their pain and frustration and to beseach God because I so easily relate to their pain and frustrations.
The area of prayer I struggle with the most is prayer for my health and healing. Surely others deserve a miracle more than I do. A friend with cancer needs to survive so that she can spend the rest of her life with the family that needs her. Those struggling with worse symptoms of dysautonomia deserve to be healed quickly because they have experienced pain that I haven't. Sometimes I think it's a lack of faith, other times it's a feeling that I don't deserve to be healed. It's at those times that I need to remember the length God went to when He gave me everlasting life. I have seen God answer so many prayers in my life. I have seen food provided during times of financial hardship, I've seen relationships restored when there was no hope, I've been given peace at times of great stress, and I've watched the impossible made possible, but this is one area of prayer I struggle with most.
Don't get me wrong, I do pray for myself. I just don't pray for healing with the same passion and conviction as I do for others. This morning I asked myself how long do I pray for healing? And the answer was loud and clear (God does tend to shout at me at times). Pray without ceasing! Don't stop! Pray with conviction! Pray because God doesn't want you to suffer! Pray because you deserve to be healed! I just need to remember God's timing isn't my timing. Sarah had to wait for years to give birth to a child she desired with all her heart. Two years is nothing. compared to her wait. Waiting isn't an easy task, as an American, I can be pretty impatient. But sometimes I just need to be patient and obedient. Remember to pray without ceasing!
Always inspired,
Michele
Prayer has always played an important role for me as a Christian. It's pretty easy for me to pray for my close friends, people on the prayer chain at my church, and the woman I have become friends with through dysautonomia and facebook. My chair in front of my computer has become a regular place of prayer for me as I daily hear of the pain and struggles of these brave woman and men with this disease. It's easy for me to relate to their pain and frustration and to beseach God because I so easily relate to their pain and frustrations.
The area of prayer I struggle with the most is prayer for my health and healing. Surely others deserve a miracle more than I do. A friend with cancer needs to survive so that she can spend the rest of her life with the family that needs her. Those struggling with worse symptoms of dysautonomia deserve to be healed quickly because they have experienced pain that I haven't. Sometimes I think it's a lack of faith, other times it's a feeling that I don't deserve to be healed. It's at those times that I need to remember the length God went to when He gave me everlasting life. I have seen God answer so many prayers in my life. I have seen food provided during times of financial hardship, I've seen relationships restored when there was no hope, I've been given peace at times of great stress, and I've watched the impossible made possible, but this is one area of prayer I struggle with most.
Don't get me wrong, I do pray for myself. I just don't pray for healing with the same passion and conviction as I do for others. This morning I asked myself how long do I pray for healing? And the answer was loud and clear (God does tend to shout at me at times). Pray without ceasing! Don't stop! Pray with conviction! Pray because God doesn't want you to suffer! Pray because you deserve to be healed! I just need to remember God's timing isn't my timing. Sarah had to wait for years to give birth to a child she desired with all her heart. Two years is nothing. compared to her wait. Waiting isn't an easy task, as an American, I can be pretty impatient. But sometimes I just need to be patient and obedient. Remember to pray without ceasing!
Always inspired,
Michele
Thursday, February 25, 2010
The Colors of Dysautonomia
Purple, purple, purple.Purple, purple's what that spells.
Purple grapes on the vine.
Purple Kool-ade's fine.
Purple, purple's what that spells.
The color songs we sing in my classroom are the most requested songs in my room, they sing with as much gusto as a pub full of men singing their favorite beer song. There is a passion for color that begins at an early age, one of my favorite childhood memories was when I opened up my first box of Crayola crayons in the 64 count box. I remember the waxy smell, the sharp poiny tips with the sharpener in the back of the box (Crayola was ingenious to insert that sharpener in the back, it meant that their young enthusiastic customers would quickly sharpen their way to another new box of crayons in no time),and the endless possibilities those crayons represented, made me believe I could create anything my heart desired.
I have always been intrigued by color. As a design major I took several university courses on color, how it affects mood and emotion. I studied how to use color in marketing and interior design. Color has a huge impact on our mood and feelings. Cool colors calm, and warm colors excite us. If you don't think you're affected that much by color, see how you feel when your next door neighbor paints their house orange or pink.
I discovered later in life that my association with color is a bit different than many of you. I have always seen color in the things I taste and smell. I discovered this quite by accident one day when a friend asked me if I would like an avacodo she had picked from her tree. I responded by saying "No thank you, I don't like avacodo's , they tastes brown," she questioned me further, and this sense of taste and color that I have had all my life and assumed everyone else had as well was to be something unusual and unheard of. Several years later I discovered that there are others with this unique ability, called synesthesia.
It figures that dysautonomia is not blind to color, and has displayed itself in various ways throughout my body.
Purple: My favorite color. Hands and feet turn various shades of this color with a dash of black and blue to highlight my eyes.
The color songs we sing in my classroom are the most requested songs in my room, they sing with as much gusto as a pub full of men singing their favorite beer song. There is a passion for color that begins at an early age, one of my favorite childhood memories was when I opened up my first box of Crayola crayons in the 64 count box. I remember the waxy smell, the sharp poiny tips with the sharpener in the back of the box (Crayola was ingenious to insert that sharpener in the back, it meant that their young enthusiastic customers would quickly sharpen their way to another new box of crayons in no time),and the endless possibilities those crayons represented, made me believe I could create anything my heart desired.
I have always been intrigued by color. As a design major I took several university courses on color, how it affects mood and emotion. I studied how to use color in marketing and interior design. Color has a huge impact on our mood and feelings. Cool colors calm, and warm colors excite us. If you don't think you're affected that much by color, see how you feel when your next door neighbor paints their house orange or pink.
I discovered later in life that my association with color is a bit different than many of you. I have always seen color in the things I taste and smell. I discovered this quite by accident one day when a friend asked me if I would like an avacodo she had picked from her tree. I responded by saying "No thank you, I don't like avacodo's , they tastes brown," she questioned me further, and this sense of taste and color that I have had all my life and assumed everyone else had as well was to be something unusual and unheard of. Several years later I discovered that there are others with this unique ability, called synesthesia.
It figures that dysautonomia is not blind to color, and has displayed itself in various ways throughout my body.
Purple: My favorite color. Hands and feet turn various shades of this color with a dash of black and blue to highlight my eyes.
Green: The color my students say I turn when I'm feeling extremely nauseated.
Blue: The color I feel when the air is thin and wishing I had a portable airtank.
Gray: The color of brainfog, that lovely inability not to finish a thought or find a word or name.
Yellow: I see this happy color dancing before my eyes just as I'm ready to pass out.
Red: The color that represents the strange tingling all over my body when my body can't handle heat or an unexpected activity. This feeling compares to the scene in Harry Potter and the Chamber of Secrets, when Harry, Hermoine and Ron take polyjuice potion. The cameras focus in on Harry's hand that is bubbling through his veins. Every time I go through this I feel as if I'm in a sci-fi movie and I'm going to turn into some outlandish beast.
Blue: The color I feel when the air is thin and wishing I had a portable airtank.
Gray: The color of brainfog, that lovely inability not to finish a thought or find a word or name.
Yellow: I see this happy color dancing before my eyes just as I'm ready to pass out.
Red: The color that represents the strange tingling all over my body when my body can't handle heat or an unexpected activity. This feeling compares to the scene in Harry Potter and the Chamber of Secrets, when Harry, Hermoine and Ron take polyjuice potion. The cameras focus in on Harry's hand that is bubbling through his veins. Every time I go through this I feel as if I'm in a sci-fi movie and I'm going to turn into some outlandish beast.
Silver: The tingle and sharp feeling I have on the tips of my fingers and toes.
Black: The dark thoughts I experience when the doctor ups my meds.
Black: The dark thoughts I experience when the doctor ups my meds.
Color still fills a unique perspective in my life, but dysautonomia has given it a new way to look at it.
Still inspired,
Michele
P.S. I struggled for a couple of weeks posting this blog. I had fun pics I downloaded to go with the colors I see and feel. But this blog application doesn't allow for pics to be placed in various places in the blog. Having my creativity squashed, and the frustrating hours of trying creative ways to make this my way made me less inspired to finish this blog. I had even considered changing blog sites, but didn't want to make that change. A new topic came into mind, and I knew I had to get this one out, even if it didn't give me that warm and fuzzy feeling inside. I hope everyone is having a good day.
Wednesday, February 10, 2010
Living out my defiant teens in my forties
When I look back at my teen years, I believe that I was every parents dream child. I worked hard at school, did my chores at home, went to church, followed the rules, no drinking, no drugs, I wasn't promiscuous, and there wasn't a defiant bone in my body. Now many of you may be thinking poor thing, she missed out on all the fun, but reality is, I had a blast, and didn't believe I was missing out on anything. My life seems to have followed that path with the exception of my marrying my former husband LOL. I was always a straight and narrow, don't wander off the path kind of gal.
Now I'm in my late forties, quickly approaching fifty, and I've noticed that rebellion has turned its ugly head in my direction. Dysautonomia compares to a hard nosed parent or an overbearing husband. Dysautonomia has too many restrictions and rules to follow. Too many don'ts and the do list is no fun. My body feels like I'm always "in the time out chair", or "the old ball and chain". Just about everything I do has restrictions, and is often very frustrating.
There are days when I'm just tired of following the restrictions dysautonomia has placed on my body. Sometimes I just need to do what I want to do, and pay the price just because it's worth it. Even if the price may be a trip to the emergency room or a day in bed. Well on Monday I had one of my rebellious days. And before your imagination starts wandering, I didn't go out drinking or carousing, or chasing after loose men (I still haven't taken the trip to "that" wild side yet). I just had to prune my peach tree. I'm sure I've disappointed a few of you, but there's just something about hard work, pruning, and proving to my former husband that I can still keep up the house. Truly the husband issue just plays a small part in this.
The reason pruning the tree is so difficult is that many of my dysautonomia symptoms make it practically impossible. I can't hold my hands over my head for more than a minute so lifting pruning sheers to cut branches is a bit of a challenge to begin with. Getting up on a ladder can make me dizzy and tachy. Tilting my head back to see which branch to cut causes dizziness, migraines and a variety of other symptoms. I have no arm strength, so squeezing the pruning sheers is nearly impossible, and finally, bending over to throw away the branches makes me dizzy. I'm sure many of you are wondering why I would want to put my body through this kind of torture, and all I can say is "I don't know, I just want to!" I guess it's the same reason that my kindergartners have for cutting large chunks of hair from their heads or smelling vomit that has just been covered with sorb-it. It doesn't make sense, but they do it anyway.
So on Monday I went out to my back yard with pruning sheers in my hands and a plan to limit myself to trimming two to three branches at a time. So I begin pruning branch number one, I can barely balance the pruning sheers over my head, but I manage to lop off my first branch, no dizziness and no damage done, and a small victory dance in my head. Off to branch number two, I struggle to get the pruning sheers over my head, and can barely squeeze them closed, branch number two falls, but I can barely move fast enough to step aside to keep the branch from hitting me. Now I know I should stop at this point, but I never stop when I should, and to be honest I knew this before I started and just lied to myself about having a plan, just to say I had one. I now attempt to cut branch number three, my arms are shaking, but I do manage to hook a branch between the sheers, and I'm jubilant at the success of this small feat. I attempt to squeeze the pruning sheers, but all strength has left my arms. I'm determined to cut the third branch, so I come up with a brilliant idea, I use my head "literally". I put my forehead against one of the lopping poles, and grab the other with both hands. I then push the handle of the pruning sheers toward my head, and snap, the branch is cut and begins to fall. I am now totally exhausted the branch is falling, too dizzy to move I just duck my head and hope that when the branch falls it doesn't hurt too badly. I smile at the craziness of this experience and chuckle because I feel I'm in the middle of one of Lucille Ball's episodes of "I Love Lucy". I've escaped my hard headed pruning adventure without a scratch. Now again you would think I should give up at this point, but no, the success of the last cut has given me a bit of an adrenaline rush (another wonderful but usually inconvenient symptom of dysautonomia), I take advantage of the rare timing of this usually inconvenient symptom and attempt another branch. Branch number four is exactly like branch number three except this time I'm left without the adrenaline rush and I'm totally wiped out. I finally listen to my body, I have no choice at this point, and I head for the house, my wonderful body lets me know that I'm now going to pay for that brief amount of defiant behavior. I manage to make it to the door just as my world around me begins to swim and dance and mock me by saying I hope it was worth it. I sit down before I actually pass out, I lean my head against the back door, close my eyes, feel my heart racing through my chest, I'm gasping for breath, my head begins to throb, and I think to myself, "yes, it was definitely worth it!"
My body did pay for my brief moment of defiance, but to be honest I'm looking forward to my next adventure.
Truly inspired,
Michele
Now I'm in my late forties, quickly approaching fifty, and I've noticed that rebellion has turned its ugly head in my direction. Dysautonomia compares to a hard nosed parent or an overbearing husband. Dysautonomia has too many restrictions and rules to follow. Too many don'ts and the do list is no fun. My body feels like I'm always "in the time out chair", or "the old ball and chain". Just about everything I do has restrictions, and is often very frustrating.
There are days when I'm just tired of following the restrictions dysautonomia has placed on my body. Sometimes I just need to do what I want to do, and pay the price just because it's worth it. Even if the price may be a trip to the emergency room or a day in bed. Well on Monday I had one of my rebellious days. And before your imagination starts wandering, I didn't go out drinking or carousing, or chasing after loose men (I still haven't taken the trip to "that" wild side yet). I just had to prune my peach tree. I'm sure I've disappointed a few of you, but there's just something about hard work, pruning, and proving to my former husband that I can still keep up the house. Truly the husband issue just plays a small part in this.
The reason pruning the tree is so difficult is that many of my dysautonomia symptoms make it practically impossible. I can't hold my hands over my head for more than a minute so lifting pruning sheers to cut branches is a bit of a challenge to begin with. Getting up on a ladder can make me dizzy and tachy. Tilting my head back to see which branch to cut causes dizziness, migraines and a variety of other symptoms. I have no arm strength, so squeezing the pruning sheers is nearly impossible, and finally, bending over to throw away the branches makes me dizzy. I'm sure many of you are wondering why I would want to put my body through this kind of torture, and all I can say is "I don't know, I just want to!" I guess it's the same reason that my kindergartners have for cutting large chunks of hair from their heads or smelling vomit that has just been covered with sorb-it. It doesn't make sense, but they do it anyway.
So on Monday I went out to my back yard with pruning sheers in my hands and a plan to limit myself to trimming two to three branches at a time. So I begin pruning branch number one, I can barely balance the pruning sheers over my head, but I manage to lop off my first branch, no dizziness and no damage done, and a small victory dance in my head. Off to branch number two, I struggle to get the pruning sheers over my head, and can barely squeeze them closed, branch number two falls, but I can barely move fast enough to step aside to keep the branch from hitting me. Now I know I should stop at this point, but I never stop when I should, and to be honest I knew this before I started and just lied to myself about having a plan, just to say I had one. I now attempt to cut branch number three, my arms are shaking, but I do manage to hook a branch between the sheers, and I'm jubilant at the success of this small feat. I attempt to squeeze the pruning sheers, but all strength has left my arms. I'm determined to cut the third branch, so I come up with a brilliant idea, I use my head "literally". I put my forehead against one of the lopping poles, and grab the other with both hands. I then push the handle of the pruning sheers toward my head, and snap, the branch is cut and begins to fall. I am now totally exhausted the branch is falling, too dizzy to move I just duck my head and hope that when the branch falls it doesn't hurt too badly. I smile at the craziness of this experience and chuckle because I feel I'm in the middle of one of Lucille Ball's episodes of "I Love Lucy". I've escaped my hard headed pruning adventure without a scratch. Now again you would think I should give up at this point, but no, the success of the last cut has given me a bit of an adrenaline rush (another wonderful but usually inconvenient symptom of dysautonomia), I take advantage of the rare timing of this usually inconvenient symptom and attempt another branch. Branch number four is exactly like branch number three except this time I'm left without the adrenaline rush and I'm totally wiped out. I finally listen to my body, I have no choice at this point, and I head for the house, my wonderful body lets me know that I'm now going to pay for that brief amount of defiant behavior. I manage to make it to the door just as my world around me begins to swim and dance and mock me by saying I hope it was worth it. I sit down before I actually pass out, I lean my head against the back door, close my eyes, feel my heart racing through my chest, I'm gasping for breath, my head begins to throb, and I think to myself, "yes, it was definitely worth it!"
My body did pay for my brief moment of defiance, but to be honest I'm looking forward to my next adventure.
Truly inspired,
Michele
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