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
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