By: Theresa Blume
Merry Christmas 2011 Friends!
I hope all those who suffer with chronic pain have made it through this day with the ability to enjoy the good things you have been blessed with. It is so easy to dwell on the negative, like the fact that I didn't get to make my family brunch, that I forget to think about the positive, such as the fact that my husband made the whole thing instead.
The chronic fatigue part of Fibromyalgia is very hard to handle on holidays, I guess due to the added stress of extra activities and people visiting, etc. It's embarrassing because I slept more than I visited my family. I love them so much and look forward to seeing them, yet all I did was sleep through almost the whole thing.
There's a lot going on in my life right now. I'm about to become an empty nester in a day or so when my last child leaves home to go to college. My son is planning his marriage to a beautiful girl next fall. My mom just got married last month. My father will be gone for two years now on December 31rst.
Life is about change, but it seems like some years have more changes in them than others. And I can't complain because the people around me are fairly happy and healthy and moving on in good ways. I just feel like I can't keep up.
Chronic Fatigue is not about being tired. It is literally total body exhaustion that wears your mind, body and soul down and you can't move. I think the fatigue is worse than the pain, although I suspect it is caused by the pain.
My lovely future daughter-in-law invited me to join her and her mother and my daughter to go look at wedding dresses tomorrow-the day after Christmas. To any other mother, this would be heaven, a fun girls day out. But I am terrified. I have to be up and ready at 11:00, and ride with them, meaning that it will be on their schedule. I am afraid, what if I get sick? What if I can't stay awake? What if?
I have lost my adventurer's spirit, and am now a cowering chicken. I want to be there for all the good things, but I live in fear of what my body might do. I might have a good day. But experience tells me otherwise. Is there anyway to prepare for these things?
All I can do is once more, turn to God and ask for His help and comfort. I want to see the future bride in a beautiful dress, I want to meet her mother, and share this with my daughter before she goes to school, but I don't want to ruin their day. Lord give me strength. In my weakness, let me lean on You O God.
I will read my Bible tonight and search for help in it's pages. There are no cures for Fibromyalgia or Chronic Fatigue yet. But with knowledge, and exposing my thoughts and fears, hopefully understanding will come and eventually we will find a way to help each other. That's my Christmas wish for all of us!
“The original definition of courage is to tell the story of who you are with your whole heart.”
― Brené Brown
Sunday, December 25, 2011
Thursday, October 27, 2011
War and Revenge, Understanding and Peace
As I write each post for this blog and try to stay focused on Fibromyalgia (Fibro), I fear I come across as a chronic complainer. I have three main goals with writing this blog. #1. Bring awareness to the fact that Fibromyalgia does exist. #2. To educate people as to what it is like to live with Fibro on a day-to-day basis. #3. Eventually find answers, solutions, tips, understanding and compassion for those suffering with chronic pain and illness.
People who have been diagnosed with Fibro each have their own level of illness or health, which makes it more difficult for the general public to gain understanding. Some people with Fibro still maintain a full time job and drive, while others are in wheelchairs, barely able to do anything for themselves. If you only know the person who has the full time job, then you wonder why can't all people with Fibro work and drive.
I hope you learn from reading my blog that the different levels have nothing to do with the person's motivation, activity, efforts, or eating habits. We don't know yet why some people have it much worse than others, so all I can do is show you my view, and maybe we will eventually figure it out.
Back to my first statement about being a chronic complainer-I am simply showing you what my life is like, and in order to do that, I can't sugar-coat it. I am not trying to gain sympathy for myself by airing all my complaints, but I am hoping that you will gain insight and understanding, because that's what you need to have compassion for those whom you meet with Fibro or other chronic pain issues. When you have compassion, then there is hope for finding a better way of life for those who suffer.
I was going to write something else entirely when I started this particular post, but I feel that I need to hammer home the idea of compassion. In my experience it seems hard for a person who is naturally healthy, who has normal energy levels, and is not in constant pain to have compassion for someone who appears to not be exercising, doesn't go to bed at a decent time, and then sleeps half the day away. What the healthy person does not see is a lifetime of struggle, trying to get up and get moving, trying to sleep at night, trying to deal with pain without medication. We don't give up, we just try to find the best way to make the most of the moments that we feel good. It's a vicious circle of constantly trying to keep up and never getting there.
If I push myself to normal activity, my body almost seems to plan revenge for making me pay for it later. I've learned to prepare for the recovery of a busy day of activity by not planning anything the next day. Lately I usually don't get through an entire day of busy activity, because I start getting unbearable back pain, followed by irritable bowel symptoms by afternoon or early evening. Afterwards my whole body hurts and is weak and shaky, and I know I'm done for that day.
Before I had my Uterine Cancer surgery, I learned to take two whole weeks of the calendar and X out ANY plans. The week before and the week of my period were so rough emotionally and physically that I found out that no matter what was happening I could not rely on my body to deal with it. No one else knew I did this, but even in my 30's I was beginning to understand that there was NO other option but to stay low for those two weeks. Little did I know that one of the many symptoms of Fibro for most women were horrendous periods and unstable PMS.
I guess that a good description of Fibromyalgia is it exaggerates anything that is going on in your life. If you are under stress, you get high anxiety, irritable bowel, migraine headaches, backaches, etc. If you slip on the ice and hurt yourself, it takes the rest of the winter to recover. Instead of a nagging back ache in the morning, you have extreme pain and can't get out of bed. But, don't misunderstand-PEOPLE with Fibro don't exaggerate, it is their BODIES that do. The people are telling facts.
I went to the dentist two weeks ago. At the time my jaw was burning with pain, but I wanted to get the process over with, so I held on. I am now in terrible pain in my entire bottom jaw, all the teeth, tongue, and top of my mouth to the point where I've had to take extra pain killers every four hours. I'm considering calling the dentist, or going to the doctor to find out if there is anything else going on, but inside I think I'm still recovering. What was a routine two-cavity fill was a traumatic episode for my mouth, and I'm still paying for it. I may have TMJ because I've had that before. I might have sinus issues because I've had that before. Or it might just be that I have to once more give my body time to digest what happened and recover at it's own time, not mine or anybody else's.
What created this war between my mind and my body? I don't know. But the trust is definitely broken. I'm learning not to be mad at my body, but to be a loving, caring friend. It is not my body's fault. I take a lesson from my three cats. When I'm tired, they curl up and take a nap with me, warming the places that hurt with their own purring bodies. When I get up, they get up. They don't judge me, but seem to support me in whatever I need to do. If only people could do that for each other.
People who have been diagnosed with Fibro each have their own level of illness or health, which makes it more difficult for the general public to gain understanding. Some people with Fibro still maintain a full time job and drive, while others are in wheelchairs, barely able to do anything for themselves. If you only know the person who has the full time job, then you wonder why can't all people with Fibro work and drive.
I hope you learn from reading my blog that the different levels have nothing to do with the person's motivation, activity, efforts, or eating habits. We don't know yet why some people have it much worse than others, so all I can do is show you my view, and maybe we will eventually figure it out.
Back to my first statement about being a chronic complainer-I am simply showing you what my life is like, and in order to do that, I can't sugar-coat it. I am not trying to gain sympathy for myself by airing all my complaints, but I am hoping that you will gain insight and understanding, because that's what you need to have compassion for those whom you meet with Fibro or other chronic pain issues. When you have compassion, then there is hope for finding a better way of life for those who suffer.
I was going to write something else entirely when I started this particular post, but I feel that I need to hammer home the idea of compassion. In my experience it seems hard for a person who is naturally healthy, who has normal energy levels, and is not in constant pain to have compassion for someone who appears to not be exercising, doesn't go to bed at a decent time, and then sleeps half the day away. What the healthy person does not see is a lifetime of struggle, trying to get up and get moving, trying to sleep at night, trying to deal with pain without medication. We don't give up, we just try to find the best way to make the most of the moments that we feel good. It's a vicious circle of constantly trying to keep up and never getting there.
If I push myself to normal activity, my body almost seems to plan revenge for making me pay for it later. I've learned to prepare for the recovery of a busy day of activity by not planning anything the next day. Lately I usually don't get through an entire day of busy activity, because I start getting unbearable back pain, followed by irritable bowel symptoms by afternoon or early evening. Afterwards my whole body hurts and is weak and shaky, and I know I'm done for that day.
Before I had my Uterine Cancer surgery, I learned to take two whole weeks of the calendar and X out ANY plans. The week before and the week of my period were so rough emotionally and physically that I found out that no matter what was happening I could not rely on my body to deal with it. No one else knew I did this, but even in my 30's I was beginning to understand that there was NO other option but to stay low for those two weeks. Little did I know that one of the many symptoms of Fibro for most women were horrendous periods and unstable PMS.
I guess that a good description of Fibromyalgia is it exaggerates anything that is going on in your life. If you are under stress, you get high anxiety, irritable bowel, migraine headaches, backaches, etc. If you slip on the ice and hurt yourself, it takes the rest of the winter to recover. Instead of a nagging back ache in the morning, you have extreme pain and can't get out of bed. But, don't misunderstand-PEOPLE with Fibro don't exaggerate, it is their BODIES that do. The people are telling facts.
I went to the dentist two weeks ago. At the time my jaw was burning with pain, but I wanted to get the process over with, so I held on. I am now in terrible pain in my entire bottom jaw, all the teeth, tongue, and top of my mouth to the point where I've had to take extra pain killers every four hours. I'm considering calling the dentist, or going to the doctor to find out if there is anything else going on, but inside I think I'm still recovering. What was a routine two-cavity fill was a traumatic episode for my mouth, and I'm still paying for it. I may have TMJ because I've had that before. I might have sinus issues because I've had that before. Or it might just be that I have to once more give my body time to digest what happened and recover at it's own time, not mine or anybody else's.
What created this war between my mind and my body? I don't know. But the trust is definitely broken. I'm learning not to be mad at my body, but to be a loving, caring friend. It is not my body's fault. I take a lesson from my three cats. When I'm tired, they curl up and take a nap with me, warming the places that hurt with their own purring bodies. When I get up, they get up. They don't judge me, but seem to support me in whatever I need to do. If only people could do that for each other.
"Too often we underestimate the power of a touch, a smile, a kind word, a listening ear, an honest compliment, or the smallest act of caring, all of which have the potential to turn a life around."
Leo Buscaglia
Wednesday, September 14, 2011
Un-tying Family Ties
Un-tying Family Ties
By: Theresa Blume
Dealing with Fibromyalgia for many years has taught me that I cannot control the way I'd like things to turn out. Ironically, giving up control helps me cope with stressful situations.
My family took a mighty blow when my father died a year and a half ago. He truly was the rock and foundation of our family. Growing up, my Dad would make each of us six kids kneel at the couch, and we all said the rosary together. It settled us down just before bed and made us reflect on things. It was during those quiet times that Dad drilled into us was that our family was the only thing in the world. We all grew up secure in the knowledge that nothing would break up our family.
But then, Dad died. And Mom changed into a different person. Everybody said it was great that she was able to get on with her life and move forward. In fact, she is making plans to get married this fall.
Unfortunately us kids are still mourning our father. We are also mourning the loss of the woman we knew as our mother. And now there is a new person who is coming into the situation. Perhaps other baby boomers are experiencing something similar in their own families.
Keep in mind that this is a personal blog, and I'm only writing from my own perspective, and not my mother's, or her soon to be husband, or siblings. I throw this question out to the universe, not for myself, but for my grieving siblings: How can they be joyful at this upcoming wedding and still sad at the funeral of our father that still seems like yesterday? I see siblings who can't move on, stuck by our father's words that our family must always stay together, trying to be loyal to him, yet feeling lost and betrayed.
This is a great life challenge for each member of our family. Our foundation has been jerked out from under us, and what we learne was right is not working.
Yet, one of the things that Dad instilled in me, is actually helping me cope with this difficult time, and that is my faith in God. And it is not just my faith in God, but God Himself is helping me through this time. My stress relief comes in writing-in journals, blogs, and working on my novel. I study spiritual things every night, and know that I don't have to understand everything to accept it. I also have a business that takes my mind off misery, and brings fun and smiles into my life, and I have my own family to take care of which has it's own ups and downs.
I live with physical pain every single day, every single minute, so I've found ways to have pain and happiness at the same time. Maybe happiness isn't always there, but there is a peace. I might not like what is going on, but my peace doesn't come from what I expect of other people. My peace comes from inside my own soul.
I think after making so many mistakes and learning to love myself anyway, I know that I can reach out for help if I need it. I've had breakdowns, and nothing and nobody in this world is worth having one for. My heart might break at times, especially as a mother, I have experienced this, but I've found that it is OK to be sad and ask for help. There are times we can't do this thing called life all by our self. In fact, we weren't supposed to. It's the hardest for the toughest of us to ask for help because those tough ones have made a life of being tough. It's the weakest of us who can get through life because we've already had to ask for help maybe many times. The tree that bends lives to tell about the storm.
There is a lot of sadness in this life, and it's not over with yet. Maybe tomorrow will be different and I won't feel so peaceful. But the word "HOPE" has been one of the most important in my vocabulary. I've also lately learned more about love, especially that love never dies. My father's love didn't die. It's still in my heart and in my life, and in my dreams. And like I started out this blog, the faith that my father gave us is holding me strong. So, even though I didn't plan it, this blog is not really about stress after all, but about Faith, Hope, and Love. Once more this ended up not the way I planned, but that's a good thing tonight!
"And now abide faith, hope, love, these three; but the greatest of these is love."......1Corinthians 13:13
By: Theresa Blume
Dealing with Fibromyalgia for many years has taught me that I cannot control the way I'd like things to turn out. Ironically, giving up control helps me cope with stressful situations.
My family took a mighty blow when my father died a year and a half ago. He truly was the rock and foundation of our family. Growing up, my Dad would make each of us six kids kneel at the couch, and we all said the rosary together. It settled us down just before bed and made us reflect on things. It was during those quiet times that Dad drilled into us was that our family was the only thing in the world. We all grew up secure in the knowledge that nothing would break up our family.
But then, Dad died. And Mom changed into a different person. Everybody said it was great that she was able to get on with her life and move forward. In fact, she is making plans to get married this fall.
Unfortunately us kids are still mourning our father. We are also mourning the loss of the woman we knew as our mother. And now there is a new person who is coming into the situation. Perhaps other baby boomers are experiencing something similar in their own families.
Keep in mind that this is a personal blog, and I'm only writing from my own perspective, and not my mother's, or her soon to be husband, or siblings. I throw this question out to the universe, not for myself, but for my grieving siblings: How can they be joyful at this upcoming wedding and still sad at the funeral of our father that still seems like yesterday? I see siblings who can't move on, stuck by our father's words that our family must always stay together, trying to be loyal to him, yet feeling lost and betrayed.
This is a great life challenge for each member of our family. Our foundation has been jerked out from under us, and what we learne was right is not working.
Yet, one of the things that Dad instilled in me, is actually helping me cope with this difficult time, and that is my faith in God. And it is not just my faith in God, but God Himself is helping me through this time. My stress relief comes in writing-in journals, blogs, and working on my novel. I study spiritual things every night, and know that I don't have to understand everything to accept it. I also have a business that takes my mind off misery, and brings fun and smiles into my life, and I have my own family to take care of which has it's own ups and downs.
I live with physical pain every single day, every single minute, so I've found ways to have pain and happiness at the same time. Maybe happiness isn't always there, but there is a peace. I might not like what is going on, but my peace doesn't come from what I expect of other people. My peace comes from inside my own soul.
I think after making so many mistakes and learning to love myself anyway, I know that I can reach out for help if I need it. I've had breakdowns, and nothing and nobody in this world is worth having one for. My heart might break at times, especially as a mother, I have experienced this, but I've found that it is OK to be sad and ask for help. There are times we can't do this thing called life all by our self. In fact, we weren't supposed to. It's the hardest for the toughest of us to ask for help because those tough ones have made a life of being tough. It's the weakest of us who can get through life because we've already had to ask for help maybe many times. The tree that bends lives to tell about the storm.
There is a lot of sadness in this life, and it's not over with yet. Maybe tomorrow will be different and I won't feel so peaceful. But the word "HOPE" has been one of the most important in my vocabulary. I've also lately learned more about love, especially that love never dies. My father's love didn't die. It's still in my heart and in my life, and in my dreams. And like I started out this blog, the faith that my father gave us is holding me strong. So, even though I didn't plan it, this blog is not really about stress after all, but about Faith, Hope, and Love. Once more this ended up not the way I planned, but that's a good thing tonight!
"And now abide faith, hope, love, these three; but the greatest of these is love."......1Corinthians 13:13
Thursday, August 4, 2011
"Changes"
A couple weekends ago I was in town shopping for supplies for a party we were planning. It was a huge deal for me to plan this party, but this was important, so as long as the weather held out, and I was assured of help from family members, I felt I could do it. But I didn't plan on having trouble with the shopping.
A little over a year ago I started having someone drive me to town (25 miles) because sometimes I'd start hurting or get too exhausted to drive myself home. It's inconvenient, and humbling, and I have to plan around my family's schedule to go shopping, but I'm not yet ready to call a county volunteer to drive me because I don't look disabled and I can't bring myself to have an elderly person drive me around in my own car. I'm 52 years old and there may come a time, but not yet. I guess if I told the truth, I was already at that point, but it feels better with family.
My husband and I tried to make a nice time of it while we were in town together. We got something to eat, took in a Saturday night church service, and did some shopping. I had a list of things I needed which required three separate stores.
By the time we went to the second store, I knew I wasn't going to finish my list. I was dragging along, and felt like I could not take one more step, so I told my husband we needed to go home. Even sitting up in the vehicle for the 25 miles home seemed like forever with back pain, legs hurting, exhaustion, stomach starting to act up. I think for the first time I realized that the day is coming when we will have to move closer to town, if not in town.
There's no question, I love where we live. I love my Avon friends and neighbors and peaceful little town, and my big backyard. I never thought that having Fibromyalgia would determine where I live. I guess most disabled people consider how close the doctors offices are, and the nearest grocery store and post office. But I didn't really think of myself as disabled when we moved to our current home.
In my case, Fibromyalgia was not a sudden accident where everything changed at once. It takes a little piece of my life at a time, so subtle you don't notice. First of course the emphasis was on the financial because I could no longer work full time. I remember the day I realized I couldn't unpack the groceries, and had to leave the big stuff that wouldn't melt in the car till my family got home to unload it for me. My doctor recommended that I get a handicap parking ticket a while back so I could be close enough in case I had a bad spell in the stores. Then I stopped driving myself to town, and started limiting my shopping to once a week instead of once every two weeks because it was too much to get at one time.
It took a long time to accept the fact that I wasn't getting better from this thing. But it's a different matter to find new things that will get worse. I guess life is like that as we age and find our activities change. Change is always the one thing we can count on in this life, but not necessarily for our desired direction.
I still try to maintain a positive attitude and am always trying to figure out how I can make the best of a new situation. It always comes back to the will of God for me.
I am very blessed and fortunate to have family members around to help me. I would rather be the one who does the helping, but that's not the position I'm in. I also constantly battle guilt of not doing much when others around me are working up a sweat. Even as a small child I would be lying on the couch, not feeling so well, but unable to explain it, and everybody else would be doing chores. I felt extreme guilt, yet knew I could not compete with my siblings on certain days. Now that I look back, I think that's when I took up reading a lot more in my room, or spending time alone in our backwoods pasture.
How do I get rid of the guilt? I know it's not my fault, and I know I do my best, but when I am around ambitious, energetic people I want to jump in and do things too. I think it's human to feel guilt when others are helping you, and you want to be doing something, but I've yet to conquer it. All my spiritual studies tell me to be myself, and not try to be someone else, so I write it out in hopes of being able to help someone in this way.
When we are young, we think about what we want to do and who we admire. A little older and we begin to plan the steps to our goals to bring our dreams to reality. There is nothing wrong with that, but we must remember to leave room for God's plans for us. I feel like God is molding me and shaping my path to fulfill the real purpose of my existence on earth. By being who I am, I cannot be prideful of my accomplishments, but humbled in my weakness. And so in my life it is proven, in our weakness, we find God's strength.
"Do not free a camel of the burden of his hump; you may be freeing him from being a camel."--Gilbert Keith Chesterton
A little over a year ago I started having someone drive me to town (25 miles) because sometimes I'd start hurting or get too exhausted to drive myself home. It's inconvenient, and humbling, and I have to plan around my family's schedule to go shopping, but I'm not yet ready to call a county volunteer to drive me because I don't look disabled and I can't bring myself to have an elderly person drive me around in my own car. I'm 52 years old and there may come a time, but not yet. I guess if I told the truth, I was already at that point, but it feels better with family.
My husband and I tried to make a nice time of it while we were in town together. We got something to eat, took in a Saturday night church service, and did some shopping. I had a list of things I needed which required three separate stores.
By the time we went to the second store, I knew I wasn't going to finish my list. I was dragging along, and felt like I could not take one more step, so I told my husband we needed to go home. Even sitting up in the vehicle for the 25 miles home seemed like forever with back pain, legs hurting, exhaustion, stomach starting to act up. I think for the first time I realized that the day is coming when we will have to move closer to town, if not in town.
There's no question, I love where we live. I love my Avon friends and neighbors and peaceful little town, and my big backyard. I never thought that having Fibromyalgia would determine where I live. I guess most disabled people consider how close the doctors offices are, and the nearest grocery store and post office. But I didn't really think of myself as disabled when we moved to our current home.
In my case, Fibromyalgia was not a sudden accident where everything changed at once. It takes a little piece of my life at a time, so subtle you don't notice. First of course the emphasis was on the financial because I could no longer work full time. I remember the day I realized I couldn't unpack the groceries, and had to leave the big stuff that wouldn't melt in the car till my family got home to unload it for me. My doctor recommended that I get a handicap parking ticket a while back so I could be close enough in case I had a bad spell in the stores. Then I stopped driving myself to town, and started limiting my shopping to once a week instead of once every two weeks because it was too much to get at one time.
It took a long time to accept the fact that I wasn't getting better from this thing. But it's a different matter to find new things that will get worse. I guess life is like that as we age and find our activities change. Change is always the one thing we can count on in this life, but not necessarily for our desired direction.
I still try to maintain a positive attitude and am always trying to figure out how I can make the best of a new situation. It always comes back to the will of God for me.
I am very blessed and fortunate to have family members around to help me. I would rather be the one who does the helping, but that's not the position I'm in. I also constantly battle guilt of not doing much when others around me are working up a sweat. Even as a small child I would be lying on the couch, not feeling so well, but unable to explain it, and everybody else would be doing chores. I felt extreme guilt, yet knew I could not compete with my siblings on certain days. Now that I look back, I think that's when I took up reading a lot more in my room, or spending time alone in our backwoods pasture.
How do I get rid of the guilt? I know it's not my fault, and I know I do my best, but when I am around ambitious, energetic people I want to jump in and do things too. I think it's human to feel guilt when others are helping you, and you want to be doing something, but I've yet to conquer it. All my spiritual studies tell me to be myself, and not try to be someone else, so I write it out in hopes of being able to help someone in this way.
When we are young, we think about what we want to do and who we admire. A little older and we begin to plan the steps to our goals to bring our dreams to reality. There is nothing wrong with that, but we must remember to leave room for God's plans for us. I feel like God is molding me and shaping my path to fulfill the real purpose of my existence on earth. By being who I am, I cannot be prideful of my accomplishments, but humbled in my weakness. And so in my life it is proven, in our weakness, we find God's strength.
"Do not free a camel of the burden of his hump; you may be freeing him from being a camel."--Gilbert Keith Chesterton
Wednesday, July 20, 2011
"Heat-Intolerant"
It has been very hot lately as you in the United States know. July and August are Wisconsin's hottest months, so we make a lot of summer plans during those months. The southern states take it for granted that they can plan a lot of outdoor things most of the year, but here in the northern U.S. we never really know if we will get snow, sleet, wind, rain, hail, or a nice day. June weddings have been known to get ruined with frost on the fresh flowers, and by Halloween we could easily have our first snow or more.
But, the heat is very hard on people with Fibromyalgia and other illnesses. Wisconsin humidity makes up for our loss of yearly warmth by making it feel much hotter than the temperature. So when it hits 80 or higher, we start becoming very uncomfortable. Right now as I write this, a quick check on the new weather program on my computer tells me it is 90 degrees, but FEELS like 98 degrees. (The same thing happens in the winter, only opposite so if it is minus 10, it might feel like minus 20! Since this blog is about educating you about the personal side of Fibromyalgia, let me explain what I mean by the heat being hard on us.
First of all, I have never sweat my entire life until I hit menopause. (Now I do have night sweats, but still do not sweat during the day.) Instead of sweating, my face gets very red, and my body feels like it is going to explode. If I don't get relief, I have been known to pass out. I get migraines from the bright sunshine, because even my eyes are more sensitive than normal. It's like there is a heat limit that when reached, the body literally breaks down. I get severe diarrhea and feel very sick to my stomach. My legs get weak and I can barely stand. My hands and feet swell up so I feel a claustrophobic sense with clothes or jewelry or shoes. I get dizzy too and feel an urgent sense of panic to get out of the heat immediately.
I haven't mentioned the allergies because that is a different situation, but they also kick up worse if I'm outside. So instead of putting myself through those symptoms I stay inside most of the summer. I have learned to limit the outdoor activities to what I think I can handle, and according to priority. Fibromyalgia people are known to have lower Vitamin D levels, and in my case it is certainly true because I simply don't go outside while the sun is shining. (Being lactose-intolerant doesn't help either.) I will only think about doing things after the sun goes down, or if it is in good shade or in air conditioning.
When I do go to something important that requires some outside time, even if I don't overdo it that day, I still feel it the next day. I might get sick to my stomach that night and spend much of the night with diarrhea, and in great pain. The next day I'm exhausted and my body feels like it might shatter if someone touches me. I ache all over even if I did nothing but sit. I have to rest and feel like I am recovering from an auto accident or something.
I like winter better. Sure the cold gets in my joints, but at least I can bundle up and go outside. I seem to have more energy in the winter too, as long as depression doesn't join in with the dark days. I love to watch the snow fall, and to crawl under a warm blanket.
Summer to me is more like a passing dream. I see the beauty of the green grass and the bright colors of the flowers against a beautiful blue sky, but I am not a participant for the most part. Other people with Fibromyalgia may have a different experience, but this is mine. When I say the heat is hard on me, I am not exaggerating or making it up. I am not being lazy either. I am struggling to do the best I can, and after over 50 years in this body, I have learned to be careful in summer.
My daughter loves to tan, and get outside and walk, or bike, or whatever. My husband gets out there and sweats in the garden and mowes the lawn. In fact, he seems to come alive in Spring, while I get better in the Fall. Meanwhile, time passes for me as I wait the summer days out. When nightfall comes, I come out of hiding. It's not easy going against the daily schedule of everybody I know, but it's the way it is.
My plea is to have consideration for those who say they are not heat tolerant. We are not like you. God has a different plan for us and it does not involve labor or fun under the hot sun. We may have differences, but that's OK. Just because I stay inside doesn't mean I am anti-social. I love it when people come visit me on my turf. But as I always say, please don't show up before noon!
"Let us dare to be ourselves, for we can do that better than anyone else can." --Shirley Briggs
But, the heat is very hard on people with Fibromyalgia and other illnesses. Wisconsin humidity makes up for our loss of yearly warmth by making it feel much hotter than the temperature. So when it hits 80 or higher, we start becoming very uncomfortable. Right now as I write this, a quick check on the new weather program on my computer tells me it is 90 degrees, but FEELS like 98 degrees. (The same thing happens in the winter, only opposite so if it is minus 10, it might feel like minus 20! Since this blog is about educating you about the personal side of Fibromyalgia, let me explain what I mean by the heat being hard on us.
First of all, I have never sweat my entire life until I hit menopause. (Now I do have night sweats, but still do not sweat during the day.) Instead of sweating, my face gets very red, and my body feels like it is going to explode. If I don't get relief, I have been known to pass out. I get migraines from the bright sunshine, because even my eyes are more sensitive than normal. It's like there is a heat limit that when reached, the body literally breaks down. I get severe diarrhea and feel very sick to my stomach. My legs get weak and I can barely stand. My hands and feet swell up so I feel a claustrophobic sense with clothes or jewelry or shoes. I get dizzy too and feel an urgent sense of panic to get out of the heat immediately.
I haven't mentioned the allergies because that is a different situation, but they also kick up worse if I'm outside. So instead of putting myself through those symptoms I stay inside most of the summer. I have learned to limit the outdoor activities to what I think I can handle, and according to priority. Fibromyalgia people are known to have lower Vitamin D levels, and in my case it is certainly true because I simply don't go outside while the sun is shining. (Being lactose-intolerant doesn't help either.) I will only think about doing things after the sun goes down, or if it is in good shade or in air conditioning.
When I do go to something important that requires some outside time, even if I don't overdo it that day, I still feel it the next day. I might get sick to my stomach that night and spend much of the night with diarrhea, and in great pain. The next day I'm exhausted and my body feels like it might shatter if someone touches me. I ache all over even if I did nothing but sit. I have to rest and feel like I am recovering from an auto accident or something.
I like winter better. Sure the cold gets in my joints, but at least I can bundle up and go outside. I seem to have more energy in the winter too, as long as depression doesn't join in with the dark days. I love to watch the snow fall, and to crawl under a warm blanket.
Summer to me is more like a passing dream. I see the beauty of the green grass and the bright colors of the flowers against a beautiful blue sky, but I am not a participant for the most part. Other people with Fibromyalgia may have a different experience, but this is mine. When I say the heat is hard on me, I am not exaggerating or making it up. I am not being lazy either. I am struggling to do the best I can, and after over 50 years in this body, I have learned to be careful in summer.
My daughter loves to tan, and get outside and walk, or bike, or whatever. My husband gets out there and sweats in the garden and mowes the lawn. In fact, he seems to come alive in Spring, while I get better in the Fall. Meanwhile, time passes for me as I wait the summer days out. When nightfall comes, I come out of hiding. It's not easy going against the daily schedule of everybody I know, but it's the way it is.
My plea is to have consideration for those who say they are not heat tolerant. We are not like you. God has a different plan for us and it does not involve labor or fun under the hot sun. We may have differences, but that's OK. Just because I stay inside doesn't mean I am anti-social. I love it when people come visit me on my turf. But as I always say, please don't show up before noon!
"Let us dare to be ourselves, for we can do that better than anyone else can." --Shirley Briggs
Tuesday, July 5, 2011
"The Perfect Day"
I hope you all had a great Independence Day. I'm proud to live in America where such things are celebrated!
My husband and I went to visit our son in La Crosse, Wisconsin and took in a baseball game where he works for the team, and also got in on the Riverfest which was on the banks of the Mississippi River. The temperature was in the low 80's, and it was a perfect day. It seemed all around me people were having fun for the day. Families, and singles and couples were enjoying the festivities and games and it seemed for a day that we all forgot about our problems.
My husband walked slowly with me and opened car doors and retrieved drinks when I needed to sit. My son had tickets waiting for us for the best seats in the stadium, and his beautiful, pleasant girlfriend sat beside us with a golden halo of being in love encircling her. To make the day even more perfect, the team we came to watch won and the crowd was delirious.
I have to admit that I've learned some good lessons from having Fibromyalgia. I've learned to enjoy the smallest of pleasantries, and the simple acts of kindness from people who really care. I've learned that when God gives me a perfect day, I need to take advantage of it because the weather affects me in extreme heat and cold. When I can walk slow instead of being rushed, I can see the little things and take beautiful pictures so that I can retain these memories on the not-so-perfect days. I've learned to be grateful that I am able to sit through an entire baseball game because my compassionate son thought ahead to get seats with backs on rather than regular bleachers.
I watched a little girl on a giant bouncy thing that looked like a combination swing and catapult. She simply gave up any fear and made herself go as high as she possibly could. I took pictures as she went higher than the treetops, her long hair loosely going wherever, and her body adjusting to the swing. I knew I was physically too far for this experience, but I pretended just for a moment it was me, unafraid, not stiffly protective, trusting in things I never would as an adult. Though this little girl will never know what she did for me, I thank God for the flight of this little angel.
Then I saw two older girls-maybe sisters, maybe cousins, or best friends-ignoring the unspoken rules of proper adults, and jumped into the large water fountain. They started out holding their pant legs up, and then just laughed and gave up as if they had found their own private swimming pool. As the water exploded up like a volcano, they positioned themselves under the liquid lava so it was like a natural shower, washing their hair and bodies with delightful, gentle force. Again, I thought of myself, maybe with my own sisters, forgetting that in our family we would never do such a thing, but just for the moment, maybe we wouldn't have to be so perfect.
It's true, you can't go back to your childhood and do things differently, but we probably wouldn't realize it when we were kids anyway. We had a different kind of fun when I was a kid, a little more isolated, but we found it where we could. I do believe everything has it's reasons, and that God has a perfect purpose for each of us, no matter how we are raised or what our life is like today.
Today, I go back to my life, back to the reality of normal stuff, but I will smile every time I think of that perfect day. Was it just a dream? No, I have pictures! Thank you God for angels we encounter, and the silent love that surrounds us.
'The greatness of a man's power is in the measure of his surrender.' William Booth, founder of the Salvation Army,
My husband and I went to visit our son in La Crosse, Wisconsin and took in a baseball game where he works for the team, and also got in on the Riverfest which was on the banks of the Mississippi River. The temperature was in the low 80's, and it was a perfect day. It seemed all around me people were having fun for the day. Families, and singles and couples were enjoying the festivities and games and it seemed for a day that we all forgot about our problems.
My husband walked slowly with me and opened car doors and retrieved drinks when I needed to sit. My son had tickets waiting for us for the best seats in the stadium, and his beautiful, pleasant girlfriend sat beside us with a golden halo of being in love encircling her. To make the day even more perfect, the team we came to watch won and the crowd was delirious.
I have to admit that I've learned some good lessons from having Fibromyalgia. I've learned to enjoy the smallest of pleasantries, and the simple acts of kindness from people who really care. I've learned that when God gives me a perfect day, I need to take advantage of it because the weather affects me in extreme heat and cold. When I can walk slow instead of being rushed, I can see the little things and take beautiful pictures so that I can retain these memories on the not-so-perfect days. I've learned to be grateful that I am able to sit through an entire baseball game because my compassionate son thought ahead to get seats with backs on rather than regular bleachers.
I watched a little girl on a giant bouncy thing that looked like a combination swing and catapult. She simply gave up any fear and made herself go as high as she possibly could. I took pictures as she went higher than the treetops, her long hair loosely going wherever, and her body adjusting to the swing. I knew I was physically too far for this experience, but I pretended just for a moment it was me, unafraid, not stiffly protective, trusting in things I never would as an adult. Though this little girl will never know what she did for me, I thank God for the flight of this little angel.
Then I saw two older girls-maybe sisters, maybe cousins, or best friends-ignoring the unspoken rules of proper adults, and jumped into the large water fountain. They started out holding their pant legs up, and then just laughed and gave up as if they had found their own private swimming pool. As the water exploded up like a volcano, they positioned themselves under the liquid lava so it was like a natural shower, washing their hair and bodies with delightful, gentle force. Again, I thought of myself, maybe with my own sisters, forgetting that in our family we would never do such a thing, but just for the moment, maybe we wouldn't have to be so perfect.
It's true, you can't go back to your childhood and do things differently, but we probably wouldn't realize it when we were kids anyway. We had a different kind of fun when I was a kid, a little more isolated, but we found it where we could. I do believe everything has it's reasons, and that God has a perfect purpose for each of us, no matter how we are raised or what our life is like today.
Today, I go back to my life, back to the reality of normal stuff, but I will smile every time I think of that perfect day. Was it just a dream? No, I have pictures! Thank you God for angels we encounter, and the silent love that surrounds us.
'The greatness of a man's power is in the measure of his surrender.' William Booth, founder of the Salvation Army,
Sunday, June 26, 2011
"Too Poor to Get Healthy"
Since having the situation with my heart, I've been making a conscious effort to eat better.
In the hospital I talked to the dietitian and she was kind enough to give me a booklet of basic recipes. I understood that one of the biggest things for heart healthy food is to add as little salt as possible. So while I'm at it, I'm revamping my whole attitude and working on meals with less sugar and fat too, hoping maybe to lose weight out of the deal.
Truthfully, my husband is not happy with the healthier meals, he really likes his processed, high-fat, high salt-whatever is bad for you-foods! But he is a trooper for me and always supportive in helping me so he joined me in the special isle of the grocery store the other day-you know the one for diabetics, low sodium, organic, and other healthy foods.
Keep in mind we don't live in a big city here in central Wisconsin, so we don't have as many choices as you might have in the more populated areas. But we do have the one isle...
I was shocked at the prices of the healthy foods and that really got me to thinking. What is wrong with this country? OK, I know that's a loaded question depending on what your agenda might be, but let's keep it about food for this discussion.
Poor people can only afford canned or boxed stuff. Food pantries are loaded with processed food because it keeps longer. Fresh fruits, vegetables, organic milk, eggs, healthy cuts of meat, the stuff we should eat-I personally can't afford. I really wanted a tuna steak so I went to our deli and it was $7.98 a pound.(on sale by the way) I asked how much I could get for that price and he picked up a nice-sized one and it was over a pound. I would have paid $9 for one tuna steak! Keep in mind we have three people eating at home-all adults.
Then we sit around and wonder why America is getting fat and why we have so many health problems? We can't afford to be healthy! This is even before we think about paying for insurance, etc. Do you know what I could buy with $9 that would feed my family? Four whoppers from Burger King or enough McDonald's burgers for the three of us. Eating out is not a luxury anymore-It's cheaper! Not to mention faster and more convenient, and when you don't feel good from being unhealthy, who wants to cook anyway?
Rachael Ray tells me I can make a meal for 30 minutes. I'm sorry, but I can't stand that long with my bad back! Barefoot Contessa is fun to watch, but I simply can't afford raspberries and all that liquor for a fancy dessert and fresh fish and blocks of good cheese from the Hampton's area where she lives. I do appreciate cooking shows, but I always have to adjust to what I can afford and what's available in my area.
I did find a good carrot salad recipe that I could afford, and I will share that with you at the end. The booklet gives great things to do with English Muffins, but nobody told me that the very cheapest I could get are packages for $1.99 and they last one day with me and my husband! I also found out that they are high in salt! Speaking of bread, the good healthy loaf of Oatnut Bread that I love is now $4.19 a loaf, but the white sandwich bread that my husband prefers is 1.19 a loaf. Guess which one I bought?
Wisconsin is farm country, and we have milk, meat, and fresh vegetables all around us. But we also have lower wages, so where does that leave us? I almost fell over when I saw how much one gallon of organic milk cost-$7.00!!! (I can get regular milk from the convenience store for little over $2.00.) I have a question-why does it cost more for low sodium stuff than for high sodium stuff? Don't you use less salt? Why charge more? How much more does it cost to NOT put salt in?
It looks to me like people with health issues are being taken advantage of. Companies that sell organic food-which should be cheaper because again, you're leaving stuff out, right? are charging more because it's healthier! What sense does that make?
There's a real problem here, and I don't understand it. It makes me mad that I have to resort to cheap unhealthy food for my family because I'm not rich. Yet the first lady tells me that I have to give my kids fruits and vegetables. Give me the money and I will do it! I would love to serve strawberries and blueberries for breakfast and fresh broccoli salad for lunch, and tuna steak for supper!
It appears to me that this country has it backwards, because the canned, processed stuff with more chemicals in it should be higher and the plain, organic, unsalted stuff should be cheaper, but just because it's healthier, it's more expensive.
I feel very passionate about this, and maybe that's a good thing. We need to address this issue in our country. Thanks for listening and if you know what we can do about this, please e-mail me!
Carrot Salad
3 cups shredded carrots
1/2 cup mayonnaise
3 spoons of sugar depending on your taste
salt and pepper depending on your taste
raisins soaked in boiling water and drained (so they are plump)
drained pineapple pieces according to taste
This recipe did not cost much to make since you can buy shredded carrots cheap, and I already had the raisins on hand. I just bought a can of pineapple on sale. It has great fiber and is filling enough for me to consider it a good snack or light lunch, and keeps in the fridge for a few days once you put it together so I can just throw some in a bowl and eat it without any preparation. I think I might add walnuts next time too for more protein and taste. Do what you want with it!
"The question is not whether we will die, but how we will live."-- Joan Borysenko
In the hospital I talked to the dietitian and she was kind enough to give me a booklet of basic recipes. I understood that one of the biggest things for heart healthy food is to add as little salt as possible. So while I'm at it, I'm revamping my whole attitude and working on meals with less sugar and fat too, hoping maybe to lose weight out of the deal.
Truthfully, my husband is not happy with the healthier meals, he really likes his processed, high-fat, high salt-whatever is bad for you-foods! But he is a trooper for me and always supportive in helping me so he joined me in the special isle of the grocery store the other day-you know the one for diabetics, low sodium, organic, and other healthy foods.
Keep in mind we don't live in a big city here in central Wisconsin, so we don't have as many choices as you might have in the more populated areas. But we do have the one isle...
I was shocked at the prices of the healthy foods and that really got me to thinking. What is wrong with this country? OK, I know that's a loaded question depending on what your agenda might be, but let's keep it about food for this discussion.
Poor people can only afford canned or boxed stuff. Food pantries are loaded with processed food because it keeps longer. Fresh fruits, vegetables, organic milk, eggs, healthy cuts of meat, the stuff we should eat-I personally can't afford. I really wanted a tuna steak so I went to our deli and it was $7.98 a pound.(on sale by the way) I asked how much I could get for that price and he picked up a nice-sized one and it was over a pound. I would have paid $9 for one tuna steak! Keep in mind we have three people eating at home-all adults.
Then we sit around and wonder why America is getting fat and why we have so many health problems? We can't afford to be healthy! This is even before we think about paying for insurance, etc. Do you know what I could buy with $9 that would feed my family? Four whoppers from Burger King or enough McDonald's burgers for the three of us. Eating out is not a luxury anymore-It's cheaper! Not to mention faster and more convenient, and when you don't feel good from being unhealthy, who wants to cook anyway?
Rachael Ray tells me I can make a meal for 30 minutes. I'm sorry, but I can't stand that long with my bad back! Barefoot Contessa is fun to watch, but I simply can't afford raspberries and all that liquor for a fancy dessert and fresh fish and blocks of good cheese from the Hampton's area where she lives. I do appreciate cooking shows, but I always have to adjust to what I can afford and what's available in my area.
I did find a good carrot salad recipe that I could afford, and I will share that with you at the end. The booklet gives great things to do with English Muffins, but nobody told me that the very cheapest I could get are packages for $1.99 and they last one day with me and my husband! I also found out that they are high in salt! Speaking of bread, the good healthy loaf of Oatnut Bread that I love is now $4.19 a loaf, but the white sandwich bread that my husband prefers is 1.19 a loaf. Guess which one I bought?
Wisconsin is farm country, and we have milk, meat, and fresh vegetables all around us. But we also have lower wages, so where does that leave us? I almost fell over when I saw how much one gallon of organic milk cost-$7.00!!! (I can get regular milk from the convenience store for little over $2.00.) I have a question-why does it cost more for low sodium stuff than for high sodium stuff? Don't you use less salt? Why charge more? How much more does it cost to NOT put salt in?
It looks to me like people with health issues are being taken advantage of. Companies that sell organic food-which should be cheaper because again, you're leaving stuff out, right? are charging more because it's healthier! What sense does that make?
There's a real problem here, and I don't understand it. It makes me mad that I have to resort to cheap unhealthy food for my family because I'm not rich. Yet the first lady tells me that I have to give my kids fruits and vegetables. Give me the money and I will do it! I would love to serve strawberries and blueberries for breakfast and fresh broccoli salad for lunch, and tuna steak for supper!
It appears to me that this country has it backwards, because the canned, processed stuff with more chemicals in it should be higher and the plain, organic, unsalted stuff should be cheaper, but just because it's healthier, it's more expensive.
I feel very passionate about this, and maybe that's a good thing. We need to address this issue in our country. Thanks for listening and if you know what we can do about this, please e-mail me!
Carrot Salad
3 cups shredded carrots
1/2 cup mayonnaise
3 spoons of sugar depending on your taste
salt and pepper depending on your taste
raisins soaked in boiling water and drained (so they are plump)
drained pineapple pieces according to taste
This recipe did not cost much to make since you can buy shredded carrots cheap, and I already had the raisins on hand. I just bought a can of pineapple on sale. It has great fiber and is filling enough for me to consider it a good snack or light lunch, and keeps in the fridge for a few days once you put it together so I can just throw some in a bowl and eat it without any preparation. I think I might add walnuts next time too for more protein and taste. Do what you want with it!
"The question is not whether we will die, but how we will live."-- Joan Borysenko
Saturday, June 11, 2011
"LISTEN TO YOUR BODY"
I've been out of touch lately due to continuous health challenges. I had a partial mastectomy on May 27th, and on June 7th, was admitted to the hospital for chest tightness and shortness of breath. As it turns out I have fluid around my heart that has been putting pressure on my heart. I was in the hospital for three days, and will now be taking blood pressure pills and will possibly have the fluid drained within a couple weeks.
I think Fibromyalgia should be taken a lot more seriously than it has been. It really does not stop with simple aches and pains. In fact, at first the doctors thought my chest pain was Fibro pain. They told me that Fibromyalgia can cause the tight chest feeling and shortness of breath also. In order to get a correct diagnosis, I had to have an entire agenda of tests from chest x-rays, chest scan, stress tests and blood tests. I appreciate the effort that St Joseph's Hospital in Marshfield, WI took to ensure that there was no stone unturned. And the way they did it made me feel like a VIP or celebrity rather than a hospital patient.
My blood pressure has been high almost every time I went to the doctor in the last year. I was told over and over that when I am in pain, my blood pressure is high, so again it was contributed to Fibromyalgia. When you have Fibromyalgia, almost everything you have can be attributed to your illness, and most of the time, it actually is because of Fibromyalgia. But, you will not know if you do not get it checked out.
So make sure you get a good medical team that take you serious and believes in you. Make sure you know your own body and when something is different, stand by your hunch. You have to speak up and be your own advocate because no one else knows what you are feeling. If you don't speak up, you could end up being told, "It's just Fibromyalgia" and then have a heart attack or worse. Don't be afraid to go to the doctor or emergency room as many times as it takes until your problem is taken care of. You might get tired of going to the doctor over and over, but YOU are the only one who can do it.
I might mention that on the day I was admitted, I was going to ignore my discomfort and lay down, but a friend came over. I wanted to tell her to go home and let me rest, but she insisted that I call the doctor. She threatened to call 911 if I didn't call the doctor. When I called, the nurse on the phone told me it sounded like I might have pneumonia from my recent surgery. So I went in, and then they discovered it was my heart. As I go over the details of that day in my mind, I wonder what would have happened if my friend hadn't come over. Sometimes we have to let others see what we can't or won't.
I thank God for my friends who care enough to ignore my pushing them away sometimes, and push back. I thank God for getting into the right hands who took me seriously and found the real problem.
I've got a lot of catching up to do after three days in the hospital. I know I can't do it all in one day. Fibromyalgia has taught me patience and priorities and let everything else go. But one thing we should never let go of is our relationships with our family and friends. Take care of yourself, and listen to your body!
“There is nothing better than a friend, unless it is a friend with chocolate.”... Charles Dickens
I think Fibromyalgia should be taken a lot more seriously than it has been. It really does not stop with simple aches and pains. In fact, at first the doctors thought my chest pain was Fibro pain. They told me that Fibromyalgia can cause the tight chest feeling and shortness of breath also. In order to get a correct diagnosis, I had to have an entire agenda of tests from chest x-rays, chest scan, stress tests and blood tests. I appreciate the effort that St Joseph's Hospital in Marshfield, WI took to ensure that there was no stone unturned. And the way they did it made me feel like a VIP or celebrity rather than a hospital patient.
My blood pressure has been high almost every time I went to the doctor in the last year. I was told over and over that when I am in pain, my blood pressure is high, so again it was contributed to Fibromyalgia. When you have Fibromyalgia, almost everything you have can be attributed to your illness, and most of the time, it actually is because of Fibromyalgia. But, you will not know if you do not get it checked out.
So make sure you get a good medical team that take you serious and believes in you. Make sure you know your own body and when something is different, stand by your hunch. You have to speak up and be your own advocate because no one else knows what you are feeling. If you don't speak up, you could end up being told, "It's just Fibromyalgia" and then have a heart attack or worse. Don't be afraid to go to the doctor or emergency room as many times as it takes until your problem is taken care of. You might get tired of going to the doctor over and over, but YOU are the only one who can do it.
I might mention that on the day I was admitted, I was going to ignore my discomfort and lay down, but a friend came over. I wanted to tell her to go home and let me rest, but she insisted that I call the doctor. She threatened to call 911 if I didn't call the doctor. When I called, the nurse on the phone told me it sounded like I might have pneumonia from my recent surgery. So I went in, and then they discovered it was my heart. As I go over the details of that day in my mind, I wonder what would have happened if my friend hadn't come over. Sometimes we have to let others see what we can't or won't.
I thank God for my friends who care enough to ignore my pushing them away sometimes, and push back. I thank God for getting into the right hands who took me seriously and found the real problem.
I've got a lot of catching up to do after three days in the hospital. I know I can't do it all in one day. Fibromyalgia has taught me patience and priorities and let everything else go. But one thing we should never let go of is our relationships with our family and friends. Take care of yourself, and listen to your body!
“There is nothing better than a friend, unless it is a friend with chocolate.”... Charles Dickens
Friday, May 20, 2011
It's Hard!
I am the mother of three children. At one time or another each of them has said, "It's hard!"
I asked one to finish their homework and I heard, "It's hard!"
I asked one to clean their room, and again I heard, "But it's hard!"
I asked another to do their chores and was greeted with, "It's too hard!"
Kids say this quite often to get out of things. Maybe it is hard for them, but it was never a good enough excuse to quit.
Now my kids are grown up and I don't hear it so often from them. I hear it more from grown-ups. Talking with someone about the economy these days and the conversation is simply ended with "It's hard." Talking to an elderly person who lives alone with little money and they might say, "It's hard."
Life is hard. I think it is very hard for those with chronic pain and disabilities, including Fibromyalgia. Getting up is hard. Getting dressed is hard. Getting into a vehicle is hard. Cleaning a part of the house is hard. Making the bed is hard.
Oh, I would love to be a kid and just scream out to the world, "It's hard!" I don't want to hurt anymore and I don't want to struggle anymore! I'm tired of staying positive every day, and being expected to do normal things.
What if I gave up the fight? What if I didn't get up one morning, and just stayed in bed and watched TV and never got dressed? What if I didn't have to face the pain and stiffness of simply getting out of bed and starting a new day?
But the Spirit within me won't do that. I have Avon customers to talk to, pets to take care of, a husband to account to, email messages waiting for an answer. There's a curiosity as to what may come to my door each day; who might call, or what the weather feels like. I want to catch the spring blossoms on my camera and the fall leaves, or the first snow.
So, I once more ask God to help me. "Help me get up dear Lord. Help me pull my clothes on and walk with me."
When I open my eyes I find one cat sleeping in the crock of my knee, one on the corner of the bed, and one rubbing her head on my arm to wake me up. I hear the birds joyfully singing their morning song, and the breeze outside my wind smells like rain.
As painful as life is, I love my life. I love my family and my friends and my pets. I love what I do and I love myself. I know that I am loved and blessed with everything I need.
I don't know why life is hard. Maybe so that when I finally do get to heaven I will see how easy it is and really appreciate it. I won't take this body with me to hold me down. My soul will float in the warm, gentle love that I gained here on this earth. When I've gained enough love to float, then I will outgrow this body, and move on to the highest dimension of love possible. And you know what? It will be easy.
― Mother Teresa
“If you judge people you have no time to love them.”
I asked one to finish their homework and I heard, "It's hard!"
I asked one to clean their room, and again I heard, "But it's hard!"
I asked another to do their chores and was greeted with, "It's too hard!"
Kids say this quite often to get out of things. Maybe it is hard for them, but it was never a good enough excuse to quit.
Now my kids are grown up and I don't hear it so often from them. I hear it more from grown-ups. Talking with someone about the economy these days and the conversation is simply ended with "It's hard." Talking to an elderly person who lives alone with little money and they might say, "It's hard."
Life is hard. I think it is very hard for those with chronic pain and disabilities, including Fibromyalgia. Getting up is hard. Getting dressed is hard. Getting into a vehicle is hard. Cleaning a part of the house is hard. Making the bed is hard.
Oh, I would love to be a kid and just scream out to the world, "It's hard!" I don't want to hurt anymore and I don't want to struggle anymore! I'm tired of staying positive every day, and being expected to do normal things.
What if I gave up the fight? What if I didn't get up one morning, and just stayed in bed and watched TV and never got dressed? What if I didn't have to face the pain and stiffness of simply getting out of bed and starting a new day?
But the Spirit within me won't do that. I have Avon customers to talk to, pets to take care of, a husband to account to, email messages waiting for an answer. There's a curiosity as to what may come to my door each day; who might call, or what the weather feels like. I want to catch the spring blossoms on my camera and the fall leaves, or the first snow.
So, I once more ask God to help me. "Help me get up dear Lord. Help me pull my clothes on and walk with me."
When I open my eyes I find one cat sleeping in the crock of my knee, one on the corner of the bed, and one rubbing her head on my arm to wake me up. I hear the birds joyfully singing their morning song, and the breeze outside my wind smells like rain.
As painful as life is, I love my life. I love my family and my friends and my pets. I love what I do and I love myself. I know that I am loved and blessed with everything I need.
I don't know why life is hard. Maybe so that when I finally do get to heaven I will see how easy it is and really appreciate it. I won't take this body with me to hold me down. My soul will float in the warm, gentle love that I gained here on this earth. When I've gained enough love to float, then I will outgrow this body, and move on to the highest dimension of love possible. And you know what? It will be easy.
― Mother Teresa
“If you judge people you have no time to love them.”
Saturday, April 30, 2011
General Health Updates
I've had people asking about my general health, so here are the updates:
My finger was noncancerous, but typed as something that could have turned out cancerous if left alone. It was a mass of red blood cells clustering together underneath my skin. Who would have thought it was anything to be concerned about? It is healing much slower than I expected and I notice I'm having trouble stretching my hand out now. Almost like the skin has tightened around the area. Hopefully that will go away someday!
I am due to have another cutting into my breast even though my biopsy showed no cancer. But after a different doctor looked at the lab results, he told my primary doctor to schedule getting the rest of the growth/tumor out in May. I will keep you updated on that if you are interested.
My depression is doing great, mainly because of new things that Avon is bringing into my life. I call it my life-saver because if keeps me social, active, busy, and feeling like I have a purpose. If you want to go to my website you can click on my link http://www.youravon.com/tblume
I also think the spring weather is helping my depression and I am getting outside a little more.
I recently saw my back specialist to get updates on what can be done to lessen my constant pain. He explained to me that my pain is largely due to the tight muscles that never relax, which is what Fibromyalgia is all about. It's also why I have discovered that taking a muscle relaxer instead of a sleeping pill makes me comfortable enough to sleep at night. But I don't recommend them during the day because you will get sleepy!
My knees have been x-rayed, and other than normal aging there was not anything to be concerned about. Yet, the last two days I have hardly been able to walk with terrible knee pain. I've had to take anti-inflammatory meds to keep the pain dulled. I think it is simply another Fibro Flare-up caused by a trip I took last week that was hard on my body. I had a lot of fun, but became terribly ill on the way home, and ever since I have had pain and tenderness more than usual in odd places.
It would be nice if we could actually define a Fibro Flare-up, but because it is different every time, there is no easy way to explain it.
My allergies have worsened to the point that my allergist suggested doing shots over a period of years. I have doubled my medication on this, but still having problems. I will wait the spring out and hopefully see if they get better.
I am not trying to get attention from all these issues, as much as let others know how things are because if no one talks about things, then we tend to feel alone when it happens to us. I want to be a tool for God to work through me to give you information when you need it. I'm also open and encouraging you to let me know how you are doing. Sometimes we need to tell someone without feeling like a hypochondriac! My hope is by sharing the little things and big things, you will know that there is someone else who understands and feels the same way you do.
Take care of yourself friends. And I MEAN THAT!
"Fear of the unknown is the worst of all the fears; it kills the creative powers that come from Curiosity."-- Dr. Nirvikar Dahiya
My finger was noncancerous, but typed as something that could have turned out cancerous if left alone. It was a mass of red blood cells clustering together underneath my skin. Who would have thought it was anything to be concerned about? It is healing much slower than I expected and I notice I'm having trouble stretching my hand out now. Almost like the skin has tightened around the area. Hopefully that will go away someday!
I am due to have another cutting into my breast even though my biopsy showed no cancer. But after a different doctor looked at the lab results, he told my primary doctor to schedule getting the rest of the growth/tumor out in May. I will keep you updated on that if you are interested.
My depression is doing great, mainly because of new things that Avon is bringing into my life. I call it my life-saver because if keeps me social, active, busy, and feeling like I have a purpose. If you want to go to my website you can click on my link http://www.youravon.com/tblume
I also think the spring weather is helping my depression and I am getting outside a little more.
I recently saw my back specialist to get updates on what can be done to lessen my constant pain. He explained to me that my pain is largely due to the tight muscles that never relax, which is what Fibromyalgia is all about. It's also why I have discovered that taking a muscle relaxer instead of a sleeping pill makes me comfortable enough to sleep at night. But I don't recommend them during the day because you will get sleepy!
My knees have been x-rayed, and other than normal aging there was not anything to be concerned about. Yet, the last two days I have hardly been able to walk with terrible knee pain. I've had to take anti-inflammatory meds to keep the pain dulled. I think it is simply another Fibro Flare-up caused by a trip I took last week that was hard on my body. I had a lot of fun, but became terribly ill on the way home, and ever since I have had pain and tenderness more than usual in odd places.
It would be nice if we could actually define a Fibro Flare-up, but because it is different every time, there is no easy way to explain it.
My allergies have worsened to the point that my allergist suggested doing shots over a period of years. I have doubled my medication on this, but still having problems. I will wait the spring out and hopefully see if they get better.
I am not trying to get attention from all these issues, as much as let others know how things are because if no one talks about things, then we tend to feel alone when it happens to us. I want to be a tool for God to work through me to give you information when you need it. I'm also open and encouraging you to let me know how you are doing. Sometimes we need to tell someone without feeling like a hypochondriac! My hope is by sharing the little things and big things, you will know that there is someone else who understands and feels the same way you do.
Take care of yourself friends. And I MEAN THAT!
"Fear of the unknown is the worst of all the fears; it kills the creative powers that come from Curiosity."-- Dr. Nirvikar Dahiya
Wednesday, April 13, 2011
WHISPER FROM HEAVEN
I'm not sure if I create my own problems or I'm just a target for problems.
I spotted what looked like a blood blister on my finger about four months ago. But I had other things to worry about. My yearly mammogram showed something suspicious and I ended up having a biopsy. Thankfully it was not cancerous.
After that week, I noticed the blister was still on my finger. So I did what a lot of uncivilized people do. I poked it with a needle. A river of blood flowed from it, and my finger swelled up, causing me to wonder if I was going to lose it. I put multiple band-aids on it, and went for the MRI for my long-standing back problem.
Turned out my degenerative joint disease is progressing. I had my yearly blood tests done to test for various things and while discussing the results with my family doctor I asked her what this thing was on my finger. She said leave it alone and put a band-aid on it.
A couple months later I was back in her office and she asked how the finger turned out. I told her that it now looked like it did before I poked it. She asked me how long it had been there, and when I told her she promptly referred me to plastic surgery. I asked her if she couldn't just lance it in the office and find out what's in there. Nope.
So I went to the Plastic Surgery department. Sitting in the waiting room I felt silly that I was there for a little blood blister while there are people with real problems. There were pamphlets on increasing or decreasing the size of various body parts so I found myself guessing who might be getting what done. Then I realized that the others in the waiting room were probably thinking the same thing about me so I tried to hide my face in my Avon book.
Finally I was called in. The surgeon studied it for a while and then sent me to the Ultrasound room. (First he gave me a long lecture about NEVER EVER using a needle-burnt or sterilized on anything suspicious!)
My little blood blister was looked at with the ultrasound, and then she put my finger in a bowl of water and it got another kind of ultrasound. Then the technician called in another doctor and they studied it, all the while my real problem-my back- is killing me from standing in an awkward position holding my finger straight.
I'm sent back to the surgeon who informs me that I am to come back tomorrow and he will "cut" it. I protested mainly because with Fibromyalgia I have a "one trip to town a week" rule due to the exhaustion of driving the 25 miles to town and back. (Those with chronic fatigue will understand) But the doctor convinces me that he has to cut it.
So the next day I was back, thinking finally he will lance it open in his office. Nope. I'm taken to the operating room, given 4 shots of pain killer in my hand-OUCH! I'm laid on a table and the big light is focused on my hand. It takes two people-the doc and a surgical technician to operate on my poor finger and five stitches.
The tiny nodual (that's what they called it) is carefully packed away to be sent to a lab on a distant planet where they do nothing but look at blood blisters. My hand is wrapped up so I look like a civil war veteran and I'm sent home with instructions to not get it wet, not touch the bandage, not do any activity that will get my blood pumping for a week until he can look at it again.
Hello? Doctor, I have an Avon business, a family, I take showers daily, and all kinds of other activities that need two working hands.
So I've spent the last week trying to follow instructions, not successfully. The very next day I held my all-day jewelry sale, and after that I tried carefully to wash my hair with one hand, use a computer with bandages holding my fingers together, and believe me I HAD to change the bandages every couple days.
Being a philosoper-type I've asked myself what is the purpose of this seemingly tiny thing causing so much commotion. Logically, I can think maybe I got a cactus spear in my finger one day when I was moving my plants. Spiritually, I think my father who is now in heaven is whispering to me because he had his finger on the same hand removed many years ago. I think I now have an idea of what he went through on a small scale as he waited to get his own finger removed after injuring it.
Tomorrow I get the stitches out (I think) and hopefully find out that there are no results to speak of from the lab, and maybe return to somewhat normal life of pain and exhaustion.
I feel like a living joke: "How many doctors does it take to diagnose a blood blister?" Too many!
Seriously, if you have two good working hands and all your fingers, thank God for them tonight. You take for granted what you have until you don't have it anymore.
"We tend to forget that happiness doesn’t come as a result of getting something we don't have, but rather of recognizing and appreciating what we do have." ...Frederick Keonig
I spotted what looked like a blood blister on my finger about four months ago. But I had other things to worry about. My yearly mammogram showed something suspicious and I ended up having a biopsy. Thankfully it was not cancerous.
After that week, I noticed the blister was still on my finger. So I did what a lot of uncivilized people do. I poked it with a needle. A river of blood flowed from it, and my finger swelled up, causing me to wonder if I was going to lose it. I put multiple band-aids on it, and went for the MRI for my long-standing back problem.
Turned out my degenerative joint disease is progressing. I had my yearly blood tests done to test for various things and while discussing the results with my family doctor I asked her what this thing was on my finger. She said leave it alone and put a band-aid on it.
A couple months later I was back in her office and she asked how the finger turned out. I told her that it now looked like it did before I poked it. She asked me how long it had been there, and when I told her she promptly referred me to plastic surgery. I asked her if she couldn't just lance it in the office and find out what's in there. Nope.
So I went to the Plastic Surgery department. Sitting in the waiting room I felt silly that I was there for a little blood blister while there are people with real problems. There were pamphlets on increasing or decreasing the size of various body parts so I found myself guessing who might be getting what done. Then I realized that the others in the waiting room were probably thinking the same thing about me so I tried to hide my face in my Avon book.
Finally I was called in. The surgeon studied it for a while and then sent me to the Ultrasound room. (First he gave me a long lecture about NEVER EVER using a needle-burnt or sterilized on anything suspicious!)
My little blood blister was looked at with the ultrasound, and then she put my finger in a bowl of water and it got another kind of ultrasound. Then the technician called in another doctor and they studied it, all the while my real problem-my back- is killing me from standing in an awkward position holding my finger straight.
I'm sent back to the surgeon who informs me that I am to come back tomorrow and he will "cut" it. I protested mainly because with Fibromyalgia I have a "one trip to town a week" rule due to the exhaustion of driving the 25 miles to town and back. (Those with chronic fatigue will understand) But the doctor convinces me that he has to cut it.
So the next day I was back, thinking finally he will lance it open in his office. Nope. I'm taken to the operating room, given 4 shots of pain killer in my hand-OUCH! I'm laid on a table and the big light is focused on my hand. It takes two people-the doc and a surgical technician to operate on my poor finger and five stitches.
The tiny nodual (that's what they called it) is carefully packed away to be sent to a lab on a distant planet where they do nothing but look at blood blisters. My hand is wrapped up so I look like a civil war veteran and I'm sent home with instructions to not get it wet, not touch the bandage, not do any activity that will get my blood pumping for a week until he can look at it again.
Hello? Doctor, I have an Avon business, a family, I take showers daily, and all kinds of other activities that need two working hands.
So I've spent the last week trying to follow instructions, not successfully. The very next day I held my all-day jewelry sale, and after that I tried carefully to wash my hair with one hand, use a computer with bandages holding my fingers together, and believe me I HAD to change the bandages every couple days.
Being a philosoper-type I've asked myself what is the purpose of this seemingly tiny thing causing so much commotion. Logically, I can think maybe I got a cactus spear in my finger one day when I was moving my plants. Spiritually, I think my father who is now in heaven is whispering to me because he had his finger on the same hand removed many years ago. I think I now have an idea of what he went through on a small scale as he waited to get his own finger removed after injuring it.
Tomorrow I get the stitches out (I think) and hopefully find out that there are no results to speak of from the lab, and maybe return to somewhat normal life of pain and exhaustion.
I feel like a living joke: "How many doctors does it take to diagnose a blood blister?" Too many!
Seriously, if you have two good working hands and all your fingers, thank God for them tonight. You take for granted what you have until you don't have it anymore.
"We tend to forget that happiness doesn’t come as a result of getting something we don't have, but rather of recognizing and appreciating what we do have." ...Frederick Keonig
Friday, March 18, 2011
Small Things
Since starting this blog, I've realized that I'm not writing every day like I intended. I love writing. I have written ever since I was very small. So it surprised me when I found myself not writing on this blog every day.
One thing I noticed is that when you are in chronic pain, you don't sit still, so I don't get on the computer nearly as much as I used to. I can remember getting my first computer. A friend and I worked out a deal and I got an older model computer out of it since she was getting a new one. I was delireous with joy when I found out how easy it was to type and fix my mistakes, or better still let the computer fix them! I found the Internet absolutely fasinating, and began looking up my husband's birth family. I made connections and quickly became pretty good at using it.
Among my siblings, I was dibbed the computer "expert". Of course I really wasn't, but it was nice to know something they didn't. They would come to me when they needed something looked up, or something advertised, or sent to someone. I got a digital camera and created a newsletter and had fun putting pictures and writings together to benefit others.
But as the years went by, the computer became more like a job. I still enjoy communications with distant friends and relatives, but I found that my attention span isn't what it used to be, and I don't stay sitting in the chair as long. Back pain has forced me to change a lot of things, but I never thought it would go so far as to shorten my computer time.
I still hand write every day, but I seem to have changed patterns. I do small projects because if I start big projects I have great difficulty getting back to them. I'm not sure what that's about, but maybe it's got something to do with patience, or the pain driving me to go on to something else to distract myself. At one time in my life I wrote a book and self-published it, but I'm not sure I'm up to that anymore. I would love to, but I'm not sure my mind would stay on one subject long enough.
So I write when I can, what I can, and hope that it benefits someone at some point. I thank you for reading what I write and giving me feedback because it gives me motivation to practice discipline to do what I love. You see, when you have Fibromyalgia, even things you love are difficult or painful, so sometimes you just want to quit. But because of you, whoever you are, I write and hope that something I've said has made sense.
I'm grateful for freedom of expression and the sense of accomplishment I get, even in small things.
“If there’s no struggle, there’s no progress.”
One thing I noticed is that when you are in chronic pain, you don't sit still, so I don't get on the computer nearly as much as I used to. I can remember getting my first computer. A friend and I worked out a deal and I got an older model computer out of it since she was getting a new one. I was delireous with joy when I found out how easy it was to type and fix my mistakes, or better still let the computer fix them! I found the Internet absolutely fasinating, and began looking up my husband's birth family. I made connections and quickly became pretty good at using it.
Among my siblings, I was dibbed the computer "expert". Of course I really wasn't, but it was nice to know something they didn't. They would come to me when they needed something looked up, or something advertised, or sent to someone. I got a digital camera and created a newsletter and had fun putting pictures and writings together to benefit others.
But as the years went by, the computer became more like a job. I still enjoy communications with distant friends and relatives, but I found that my attention span isn't what it used to be, and I don't stay sitting in the chair as long. Back pain has forced me to change a lot of things, but I never thought it would go so far as to shorten my computer time.
I still hand write every day, but I seem to have changed patterns. I do small projects because if I start big projects I have great difficulty getting back to them. I'm not sure what that's about, but maybe it's got something to do with patience, or the pain driving me to go on to something else to distract myself. At one time in my life I wrote a book and self-published it, but I'm not sure I'm up to that anymore. I would love to, but I'm not sure my mind would stay on one subject long enough.
So I write when I can, what I can, and hope that it benefits someone at some point. I thank you for reading what I write and giving me feedback because it gives me motivation to practice discipline to do what I love. You see, when you have Fibromyalgia, even things you love are difficult or painful, so sometimes you just want to quit. But because of you, whoever you are, I write and hope that something I've said has made sense.
I'm grateful for freedom of expression and the sense of accomplishment I get, even in small things.
“If there’s no struggle, there’s no progress.”
Saturday, February 26, 2011
MY HERO
I am going to admit, I've been depressed these last couple weeks, but on Wednesday I reached the lowest point. I've had three hospitalizations in the past for "breakdowns" so I am much too familiar with the difference between just being in a bad mood and reaching the danger level of depression.
When you feel this way, it's hard to think logically. But somewhere along the line, I got it into my head that when I reach that level, I must reach out and call someone. It was extremely hard to do that in the beginning. It's hard to admit that you have lost control. It's a pride thing, but it's like a basic human desire to be in control, and have others think you are in control. Making a phone call and asking for help is very difficult, comparable to speaking in public for some people.
So on that day last week when the tears started flowing and I couldn't stop them, I knew what to do. One of the things that helped was having my cats in the house with me because not only did they respond to my sadness, but I knew I was not alone. Cirrus, the one we've had the longest, stared at me with those eyes that asked, "What is this strange thing you are doing?"
I wanted to escape his stare, so I retreated to my bedroom where all three of our cats joined me. Cirrus came right up to my head and planted himself next to me, willing to stay as long as it took. The other two knew something was up, so they just found a cozy part of the bed and went to sleep.
I took the phone with me, and reached for it three times before I made a call. I thought about who might be available, who might be working or busy, who might understand and talk me through this episode. I would pick up the phone, and then get scared and put it down. Finally of all people, I called my mother. Here I am, 52 years old, still calling Mom.
But she was the right one. She knew me best, knew without asking, knew what to say, knew what to do. And she took action and immediately made plans to come and spend the night. She didn't make me feel stupid or childish. She showed me that she cared enough to stop what she was doing and come to my house; a 75 year-old woman driving one hour away in the winter weather.
She did much more than that as the night went on, and all the next day, but that would take a book to write. She is not and will never be the perfect mother figure. She is a little crazy sometimes herself, dealing with being a new widow, and finding her own lost childhood, but the fact is that she still tries to do her best. I have been angry with her and forgiven her a few times, and sometimes I think we may have grown up together.
But the thing she did right was to show me that despite the mistakes, she will always try her best to be there, and I always knew that she loved me more than her own life. She has made incredible sacrifices to "save" me, help me, comfort me, give to me, and love me. Other family members don't understand our relationship, but they also don't understand my illness.
It seems to me that as a grown daughter I am the one who should be caring for mom at this point, but with Fibromyalgia all the "shoulds" get thrown out the window. I "should" be a better wife, mother, sister, friend, daughter. I "should" have a cleaner house, a good job, a better schedule, the list goes on and on. But all I can do is accept what I have been given and do what I can. God will have to pay my mom back for all the sacrifices she has made. All I can do is humbly say "thanks Mom".
I don't know why I get depressed. I have medicine, therapy, family, friends, and whatever I need to get through each day. Even though I have disorders, God has provided me with what I need to get through each day. I lost my dad over a year ago, and I can't imagine losing my mom. I pray that if that day comes, God will give me the strength to continue on.
I wish that everyone had people like I do, especially those with chronic pain and disabilities. It's hard to ask for help, but remember that you are allowing someone else the opportunity to fulfill their purpose when they are helping you. It's not a fun position to be the one receiving help, but it's the way life works. One of the greatest gifts you can give is to help someone without making them feel helpless.
"The greatness of a man's power is in the measure of his surrender."
............... William Booth, founder of the Salvation Army,
When you feel this way, it's hard to think logically. But somewhere along the line, I got it into my head that when I reach that level, I must reach out and call someone. It was extremely hard to do that in the beginning. It's hard to admit that you have lost control. It's a pride thing, but it's like a basic human desire to be in control, and have others think you are in control. Making a phone call and asking for help is very difficult, comparable to speaking in public for some people.
So on that day last week when the tears started flowing and I couldn't stop them, I knew what to do. One of the things that helped was having my cats in the house with me because not only did they respond to my sadness, but I knew I was not alone. Cirrus, the one we've had the longest, stared at me with those eyes that asked, "What is this strange thing you are doing?"
I wanted to escape his stare, so I retreated to my bedroom where all three of our cats joined me. Cirrus came right up to my head and planted himself next to me, willing to stay as long as it took. The other two knew something was up, so they just found a cozy part of the bed and went to sleep.
I took the phone with me, and reached for it three times before I made a call. I thought about who might be available, who might be working or busy, who might understand and talk me through this episode. I would pick up the phone, and then get scared and put it down. Finally of all people, I called my mother. Here I am, 52 years old, still calling Mom.
But she was the right one. She knew me best, knew without asking, knew what to say, knew what to do. And she took action and immediately made plans to come and spend the night. She didn't make me feel stupid or childish. She showed me that she cared enough to stop what she was doing and come to my house; a 75 year-old woman driving one hour away in the winter weather.
She did much more than that as the night went on, and all the next day, but that would take a book to write. She is not and will never be the perfect mother figure. She is a little crazy sometimes herself, dealing with being a new widow, and finding her own lost childhood, but the fact is that she still tries to do her best. I have been angry with her and forgiven her a few times, and sometimes I think we may have grown up together.
But the thing she did right was to show me that despite the mistakes, she will always try her best to be there, and I always knew that she loved me more than her own life. She has made incredible sacrifices to "save" me, help me, comfort me, give to me, and love me. Other family members don't understand our relationship, but they also don't understand my illness.
It seems to me that as a grown daughter I am the one who should be caring for mom at this point, but with Fibromyalgia all the "shoulds" get thrown out the window. I "should" be a better wife, mother, sister, friend, daughter. I "should" have a cleaner house, a good job, a better schedule, the list goes on and on. But all I can do is accept what I have been given and do what I can. God will have to pay my mom back for all the sacrifices she has made. All I can do is humbly say "thanks Mom".
I don't know why I get depressed. I have medicine, therapy, family, friends, and whatever I need to get through each day. Even though I have disorders, God has provided me with what I need to get through each day. I lost my dad over a year ago, and I can't imagine losing my mom. I pray that if that day comes, God will give me the strength to continue on.
I wish that everyone had people like I do, especially those with chronic pain and disabilities. It's hard to ask for help, but remember that you are allowing someone else the opportunity to fulfill their purpose when they are helping you. It's not a fun position to be the one receiving help, but it's the way life works. One of the greatest gifts you can give is to help someone without making them feel helpless.
"The greatness of a man's power is in the measure of his surrender."
............... William Booth, founder of the Salvation Army,
Monday, February 21, 2011
PRIORITIES
One thing I've noticed lately is that it seems like I have less time than I used to. When I thought about this I came up with a couple reasons.
First, it's winter and of course that means shorter days. The mornings are darker, and it gets darker earlier, so of course the time of light is shorter. This affects me tremendously, not like in depression so much, but in fatigue and lack of motivation. Maybe this happens every year, but I've noticed it more pronounced this year.
The good news is that with it being nearly the end of February, this season is on it's way home, so the short days will soon stretch into longer, warmer spring days.
The other thing I realized is that having Fibromyalgia really cuts into a busy life. Of course those who have it, already know this, but I want to put it into words for those who do not have it.
It starts in the mornings. It takes longer to get up and out of bed, and to get moving. I used to tell my Avon customers not to expect a phone call until 11 in the morning, and now the time is after 1. I always promise myself that I will force myself to change that, but so far I've not had much progress because I end up having a bad night and it starts all over again.
After I do get moving, I barely get out of the shower and I'm exhausted again. Sometimes, I'm so tired I am dizzy and actually have to lay down again. Not necessarily to sleep, but just get that never-quenched feeling of rest.
I do have some good time in the afternoons and most evenings, but when I look at the whole day I don't accomplish much.
After thinking about all this, I realized that not having so much time has made me focus on priorities. I have to think about what is important and what is not important.
I've come up with some important priorites: Health, Family, Financial, Mental Well-being.
The things that are not important: Fights with my husband (or anyone else for that matter), listening to idle gossip and chatter, computer time wasters, some TV shows, house cleaning extremes, etc.
So I'm working on the thought of approaching things with the question: Does this activity fit in an important category, or a non-important category?
It's sort of like if you knew you only had a month to live, what would you do, and what would you cut out of your life. I think having severe Fibromyalgia has given me a chance to focus on the important things.
I believe doing this blog is one of those important things for my well-being, and hopefully for others.
I'd like to get your thoughts on this in case I've missed an important thing, or an unimportant thing.
Thanks!
“I must govern the clock, not be governed by it.”
― Golda Meir
First, it's winter and of course that means shorter days. The mornings are darker, and it gets darker earlier, so of course the time of light is shorter. This affects me tremendously, not like in depression so much, but in fatigue and lack of motivation. Maybe this happens every year, but I've noticed it more pronounced this year.
The good news is that with it being nearly the end of February, this season is on it's way home, so the short days will soon stretch into longer, warmer spring days.
The other thing I realized is that having Fibromyalgia really cuts into a busy life. Of course those who have it, already know this, but I want to put it into words for those who do not have it.
It starts in the mornings. It takes longer to get up and out of bed, and to get moving. I used to tell my Avon customers not to expect a phone call until 11 in the morning, and now the time is after 1. I always promise myself that I will force myself to change that, but so far I've not had much progress because I end up having a bad night and it starts all over again.
After I do get moving, I barely get out of the shower and I'm exhausted again. Sometimes, I'm so tired I am dizzy and actually have to lay down again. Not necessarily to sleep, but just get that never-quenched feeling of rest.
I do have some good time in the afternoons and most evenings, but when I look at the whole day I don't accomplish much.
After thinking about all this, I realized that not having so much time has made me focus on priorities. I have to think about what is important and what is not important.
I've come up with some important priorites: Health, Family, Financial, Mental Well-being.
The things that are not important: Fights with my husband (or anyone else for that matter), listening to idle gossip and chatter, computer time wasters, some TV shows, house cleaning extremes, etc.
So I'm working on the thought of approaching things with the question: Does this activity fit in an important category, or a non-important category?
It's sort of like if you knew you only had a month to live, what would you do, and what would you cut out of your life. I think having severe Fibromyalgia has given me a chance to focus on the important things.
I believe doing this blog is one of those important things for my well-being, and hopefully for others.
I'd like to get your thoughts on this in case I've missed an important thing, or an unimportant thing.
Thanks!
“I must govern the clock, not be governed by it.”
― Golda Meir
Thursday, February 10, 2011
That's Normal
I have been sick this last week with sinus, cold, flu-like symptoms. I don't know what it is officially, but I do know that there is a difference from the normal Fibromyalgia symptoms and having some type of virus. Of course when you have Fibromyalgia, a simple virus is a catastrophy because it is like a second army attacking while you are still fighting the first one.
What bothered me the other day was something that my poor husband said without thinking. He called from work and asked how I was doing. I told him I was sick, and he responded by saying, "That's normal". I didn't have the strength to argue, and inside I knew how he felt. It seems like it is always something, so when I say I'm sick it doesn't cause any alarms to go off.
When a healthy person gets sick, they might go to bed for the day, they might get treated special with chicken soup in bed, etc. But when you are already having constant problems, being sick is no different than any other day for those who live with you. In fact, many times you feel like you have the flu, and you look it too. So in a way, I'm expected to continue to do everything I can like I always do. And when I don't, I get funny looks, like where's supper? Or did you do ANYTHING today?
My family is tired of me being sick. My friends don't want to hear me complain. My doctors just fill up the pill bottles and shut me out. I suppose I could and should suffer in silence. But I'm a truthful person, and I never hold things in. If I did'nt explain how I feel, no one would know why I am withdrawn, silent, not moving, angry, irritable, not answering phones, etc. Either way, it's not a good situation.
I've read about saints who suffered and even continued to labor while suffering, and never complained. But I'm not a saint. I want help and support. I realize that no one can do anything, but sometimes a kind word, a gentle touch, a smile of understanding is all I need. People who live with you get tired of doing things like that because it never ends. And I don't blame them. I'm not sure I could live with myself if I wasn't confined in my own body.
But I did a good thing today for me. I called a friend who does understand because she has something very similar to me. And we leaned on each other for a while. She built me up, and I made her feel better. We know that God has given us to each other as friends for this very reason. In fact, I found a description that fits our friendship that goes something like this, "True friendship is one soul in two bodies." That's how I feel about my friend.
So when you wear your family out, don't forget about your friend who has the other half of your soul.
What bothered me the other day was something that my poor husband said without thinking. He called from work and asked how I was doing. I told him I was sick, and he responded by saying, "That's normal". I didn't have the strength to argue, and inside I knew how he felt. It seems like it is always something, so when I say I'm sick it doesn't cause any alarms to go off.
When a healthy person gets sick, they might go to bed for the day, they might get treated special with chicken soup in bed, etc. But when you are already having constant problems, being sick is no different than any other day for those who live with you. In fact, many times you feel like you have the flu, and you look it too. So in a way, I'm expected to continue to do everything I can like I always do. And when I don't, I get funny looks, like where's supper? Or did you do ANYTHING today?
My family is tired of me being sick. My friends don't want to hear me complain. My doctors just fill up the pill bottles and shut me out. I suppose I could and should suffer in silence. But I'm a truthful person, and I never hold things in. If I did'nt explain how I feel, no one would know why I am withdrawn, silent, not moving, angry, irritable, not answering phones, etc. Either way, it's not a good situation.
I've read about saints who suffered and even continued to labor while suffering, and never complained. But I'm not a saint. I want help and support. I realize that no one can do anything, but sometimes a kind word, a gentle touch, a smile of understanding is all I need. People who live with you get tired of doing things like that because it never ends. And I don't blame them. I'm not sure I could live with myself if I wasn't confined in my own body.
But I did a good thing today for me. I called a friend who does understand because she has something very similar to me. And we leaned on each other for a while. She built me up, and I made her feel better. We know that God has given us to each other as friends for this very reason. In fact, I found a description that fits our friendship that goes something like this, "True friendship is one soul in two bodies." That's how I feel about my friend.
So when you wear your family out, don't forget about your friend who has the other half of your soul.
Sunday, January 23, 2011
"Legally Disabled"
On July 14th, 2005, upon the advice of my best friend, I applied for disability. It was after one of our "talks" and we both knew that my health wasn't getting any better. I was frustrated from all the consequences of being sick, because it was affecting my family as well as myself. She thought it would be wonderful for me to get disability so I could have a better life.
Little did we forsee that over 5 years would pass before a judge in another state on a TV monitor would make the declaration. Meanwhile my health, mental state, and finances deteriorated after a major car accident, cancer, my mom getting cancer, three devastating moves, and my father's death. The judges final verdict of "legally disabled" on January 18th, 2011 came small, uneventful, and quietly.
There will be no backpay from 2005 as I'd been told in the beginning, so it equals no financial gain to be disabled. Plus my husband still works, so I'm not sure that there will be any future gain since this is a "needs based" program. My only hope is that I can get health insurance for less that what I'm paying now since that has become my most important priority.
I have a lot to say about the disability system after being a participant in it for 5 years. I've formed an opinion of judges, lawyers, courts and legal assistants as well. But at this point, I'm afraid to say anything because this system has knocked me down hard with it's cold, uncaring, legalistic loopholes and I'm afraid what I have will be taken away from me.
I don't know who originally thought up the idea of giving disabled folks help, but somehow I don't think that what we have today is what they meant. I have seen people who are much healthier and wealthier get disability while others who are worse off than me suffer from negligence.
One thing I have seen is that those who have been well enough to work at good jobs are definitely the ones who get it faster and they get more financial benefits. But the ones who are too sick to work, and don't know all the rules and are too poor to hire good lawyers are the ones who are ignored the longest if they get it at all.
I tried to stay positive, but I'm very depressed by all of it. To be declared disabled is not an award I wanted to win when I started out in life. Since the "award" I've not had any relief from pain, sickness or collector's calls.
I'm trying to stay low and see what happens. I realize that we don't have a perfect government, but it is sad when you lose hope in your government. I love my country, and by that I mean the people, the suffering, the outcast, the ones who keep going after getting knocked down, and the ones that really do help others. I love the land and the water and the air of my country, and that is suffering as well. The pain of our land, water and air is a reflection of the sickness of it's people and the priorities of it's government.
Tonight, I find it hard to encourage you, but if you can do one thing to help another person, an animal, or a tree, do it. If you are strong, speak out for many, write for many, care for many. That's our only real hope is that we have enough light inside us to still shine for something other than ourself.
"All the great things are simple,
and many can be expressed in a single word:
freedom; justice; honor; duty; mercy; hope."
.....Winston Churchill
Little did we forsee that over 5 years would pass before a judge in another state on a TV monitor would make the declaration. Meanwhile my health, mental state, and finances deteriorated after a major car accident, cancer, my mom getting cancer, three devastating moves, and my father's death. The judges final verdict of "legally disabled" on January 18th, 2011 came small, uneventful, and quietly.
There will be no backpay from 2005 as I'd been told in the beginning, so it equals no financial gain to be disabled. Plus my husband still works, so I'm not sure that there will be any future gain since this is a "needs based" program. My only hope is that I can get health insurance for less that what I'm paying now since that has become my most important priority.
I have a lot to say about the disability system after being a participant in it for 5 years. I've formed an opinion of judges, lawyers, courts and legal assistants as well. But at this point, I'm afraid to say anything because this system has knocked me down hard with it's cold, uncaring, legalistic loopholes and I'm afraid what I have will be taken away from me.
I don't know who originally thought up the idea of giving disabled folks help, but somehow I don't think that what we have today is what they meant. I have seen people who are much healthier and wealthier get disability while others who are worse off than me suffer from negligence.
One thing I have seen is that those who have been well enough to work at good jobs are definitely the ones who get it faster and they get more financial benefits. But the ones who are too sick to work, and don't know all the rules and are too poor to hire good lawyers are the ones who are ignored the longest if they get it at all.
I tried to stay positive, but I'm very depressed by all of it. To be declared disabled is not an award I wanted to win when I started out in life. Since the "award" I've not had any relief from pain, sickness or collector's calls.
I'm trying to stay low and see what happens. I realize that we don't have a perfect government, but it is sad when you lose hope in your government. I love my country, and by that I mean the people, the suffering, the outcast, the ones who keep going after getting knocked down, and the ones that really do help others. I love the land and the water and the air of my country, and that is suffering as well. The pain of our land, water and air is a reflection of the sickness of it's people and the priorities of it's government.
Tonight, I find it hard to encourage you, but if you can do one thing to help another person, an animal, or a tree, do it. If you are strong, speak out for many, write for many, care for many. That's our only real hope is that we have enough light inside us to still shine for something other than ourself.
"All the great things are simple,
and many can be expressed in a single word:
freedom; justice; honor; duty; mercy; hope."
.....Winston Churchill
Wednesday, January 12, 2011
Feeling Useful
I've just finished putting in my Avon order for the night, and it's a satisfying feeling. I LOVE the Avon company, and my customers/friends. I have a team of recruits that I cherish with all my heart, which has been an unexpected blessing.
I'm certainly not rich in financial gain at this point with my Avon business, but it has given me something far beyond riches. It has given me a reason to get out of bed in the morning. Especially on these dark January days when motivation competes with depression, and creativity competes with fatigue.
I encourage you to find something that makes you feel useful, and don't worry if it makes money or not. We need creative activity, no matter what our physical capability. Avon makes me feel like I have something to offer others, and gives me hopes and dreams for my future.
I have limits on what I can do, not just from Fibromyalgia, but also because I have severe hearing impairment, and I have anxiety from Post Traumatic Stress Disorder. It's easier to find what I can't do than what I can do. But that's not the attitude that is going to get me up in the morning.
When I wake up the first thing I'm aware of is screaming pain and a heaviness that seems to hold my body down in the bed. But then, as I slowly come to life, I think about what I wrote down the night before on my morning letter (a different blog coming up). That tells me that I might have a customer coming by today, or orders to put in, or maybe the UPS is bringing my orders today. So I get some heat on my back and pills to working on the pain, and start my morning prayers, all the while considering how much time I have before I must deal with the day's business.
If you don't have something in your life that gives you a feel of self worth, then reach deep into your heart and ask what makes you happy. We must stay positive. There is no other choice. It's not a risk to make yourself happy. It's a risk not to.
I'm certainly not rich in financial gain at this point with my Avon business, but it has given me something far beyond riches. It has given me a reason to get out of bed in the morning. Especially on these dark January days when motivation competes with depression, and creativity competes with fatigue.
I encourage you to find something that makes you feel useful, and don't worry if it makes money or not. We need creative activity, no matter what our physical capability. Avon makes me feel like I have something to offer others, and gives me hopes and dreams for my future.
I have limits on what I can do, not just from Fibromyalgia, but also because I have severe hearing impairment, and I have anxiety from Post Traumatic Stress Disorder. It's easier to find what I can't do than what I can do. But that's not the attitude that is going to get me up in the morning.
When I wake up the first thing I'm aware of is screaming pain and a heaviness that seems to hold my body down in the bed. But then, as I slowly come to life, I think about what I wrote down the night before on my morning letter (a different blog coming up). That tells me that I might have a customer coming by today, or orders to put in, or maybe the UPS is bringing my orders today. So I get some heat on my back and pills to working on the pain, and start my morning prayers, all the while considering how much time I have before I must deal with the day's business.
If you don't have something in your life that gives you a feel of self worth, then reach deep into your heart and ask what makes you happy. We must stay positive. There is no other choice. It's not a risk to make yourself happy. It's a risk not to.
Tuesday, January 4, 2011
Letting Go
I was actually not trying to think of a motto for the new year, but as I wrote in my journal, this one seemed to come from heaven straight to me, and maybe by sharing it, others will find inspiration too.
I will let go in 2011
I think that people are afraid to let go because they will have an empty space, and they are not sure what will go in there. That's why they say replace a bad habit with a good habit. But I think I need some empty space for my creativity to work better.
I want more fun this year, and freedom. But in order to have that, I must let go of some things. I wrote down a list of things that people might want to let go of, and this is what I've come up with:
Let go of ANGER
Let go of SHAME
Let go of PAST HURTS
Let go of UNNECESSARY OBLIGATIONS
Let go of GUILT
Let go of OLD ROUTINES THAT NO LONGER SERVE ME WELL
Let go of the WRONG PEOPLE
Let go of MATERIAL CLUTTER
Let go of BAD HABITS
Let go of ANXIETY
Let go of RUSHING AROUND NEEDLESSLY
Let go of CLOTHES THAT I DON'T NEED, WEAR, or WANT
Let go of INHIBITIONS
Let go of OTHER PEOPLE'S OPINIONS
Let go of USELESS FEARS & THOUGHTS
Let go of LACK OF FAITH
Let go the word "CAN'T"
Let go of OLD MINDSETS THAT HOLD ME BACK
Let go of SELF-DEPRECIATING WORDS & THOUGHTS
Let go of UNHEALTHY IMPULSES
There are some on this list that I can relate to more than others, but I thought of as many as I could for all of us. I will keep the good memories, the good thoughts, the good people and the good clutter, but this year I'm going to work on letting go because I seem to have a hard time with that more than keeping things.
I know it won't be an overnight change, and perfection will never happen, but at least I can strive for these things, and I think if I keep this in front of me, maybe next year I will be better. Even if ONE of those things gets off the list, imagine what a difference it would make! I believe I will keep this handy to check on once in a while so I can see my progress.
Let's all let go this year and give ourselves more time, space, freedom, and joy.
"What you get by achieving your goals is not as important as what you become by achieving your goals."-- Zig Ziglar
I will let go in 2011
I think that people are afraid to let go because they will have an empty space, and they are not sure what will go in there. That's why they say replace a bad habit with a good habit. But I think I need some empty space for my creativity to work better.
I want more fun this year, and freedom. But in order to have that, I must let go of some things. I wrote down a list of things that people might want to let go of, and this is what I've come up with:
Let go of ANGER
Let go of SHAME
Let go of PAST HURTS
Let go of UNNECESSARY OBLIGATIONS
Let go of GUILT
Let go of OLD ROUTINES THAT NO LONGER SERVE ME WELL
Let go of the WRONG PEOPLE
Let go of MATERIAL CLUTTER
Let go of BAD HABITS
Let go of ANXIETY
Let go of RUSHING AROUND NEEDLESSLY
Let go of CLOTHES THAT I DON'T NEED, WEAR, or WANT
Let go of INHIBITIONS
Let go of OTHER PEOPLE'S OPINIONS
Let go of USELESS FEARS & THOUGHTS
Let go of LACK OF FAITH
Let go the word "CAN'T"
Let go of OLD MINDSETS THAT HOLD ME BACK
Let go of SELF-DEPRECIATING WORDS & THOUGHTS
Let go of UNHEALTHY IMPULSES
There are some on this list that I can relate to more than others, but I thought of as many as I could for all of us. I will keep the good memories, the good thoughts, the good people and the good clutter, but this year I'm going to work on letting go because I seem to have a hard time with that more than keeping things.
I know it won't be an overnight change, and perfection will never happen, but at least I can strive for these things, and I think if I keep this in front of me, maybe next year I will be better. Even if ONE of those things gets off the list, imagine what a difference it would make! I believe I will keep this handy to check on once in a while so I can see my progress.
Let's all let go this year and give ourselves more time, space, freedom, and joy.
"What you get by achieving your goals is not as important as what you become by achieving your goals."-- Zig Ziglar
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