Sunday, October 31, 2010
I Will Survive!: I talked to a long time friend this morning who wa...
I Will Survive!: I talked to a long time friend this morning who wa...: "I talked to a long time friend this morning who was recently diagnosed with FM. As we were talking, I kept thinking in the back of my head,..."
I talked to a long time friend this morning who was recently diagnosed with FM. As we were talking, I kept thinking in the back of my head, "I was there". I could here the pain in her voice. And not just the physical pain! The pain of being scared, the kind that eats you up!
Chronic pain illnesses rob you of every asspect of your life. As I explained to her, you grieve. You grieve for the life you once knew, you grieve for your loss of functioning, you grieve for an income, you grieve for yourself as if you have died. Then there is this person, that you don't know, and don't want to be, standing there looking back at you in the mirror. You look the same, but every part of you is different, and unknown. It is one of the scariest places to be to not know who you are anymore!
You question everything in your life that you once knew. Your angry! Angry at your body, angry at yourself, angry at the doctors. The anger burns inside of you, and when it does, you create all this stress inside that makes you feel even worse. Then to have nobody to understand what you are going through is the hardest part. One day you can walk a mile, the next you can't get out of bed. Family sometimes have the hardest time, because they see you on a daily basis. It's like well, you did this yesterday, and now your saying you can't move because your in so much pain? They tend not to understand and need to be educated by you, your doctor, or just leave them articles to read!
Everything I have been through to this point has been a huge obstacle to overcome. Some days are better then others, but that pain is always there. Deep down inside you. You try to continue living the way you used to but it doesn't work anymore. You eventually come to the understanding that you have to make amends with your body, mind, and soul. Once you can do that, and let go of some that negative energy, you are able to at least deal with your life.
Knowing first that you never commit to something down the road is so important. Now is when you start living day to day, hour to hour, and your life becomes a little more managable. Destressing your life is not always possible, as I very well know, but if you can start managing your self, you can at least save some stress from happening.
I have a hard time with stress. I have a daughter who is ill, three grandbabies, and a husband who likes things a certain way. My life is full of stress! I tell them all the time, "we will see". It's my first words out of my mouth these days when asking if I would like to do something. My husband has gotten a lot better with it, but my daughter is so stressed herself these days, she doesn't hear what i am saying. So it gets hard for me.
Guilt is a huge problem when dealing with family and close friends. I always feel guilty even though I know I shouldn't. I am the person in my family that was somehow picked to be the go to person for any family problems. Even after I became disabled, I am somehow still that person. So when something needs to be down for my parents, I am there. I know how much they appreciate it, and I know they worry about me. I am the youngest of six kids, and I purchased 40 acres from my parents years ago. So I am close to them. Even though my two brothers are actually across the street from them, it is still me. My doctor tells me I am the glue of my family, all of it. He tells me to slow down, but then tells me if it weren't for me, who knows what my parents would do. So How do I stop being the go to person with that on my concious? I can't and I won't. So I take it on willingly knowing it isn't actually the healthiest thing for me to do.
Life isn't always easy, but at least I am living it.
Chronic pain illnesses rob you of every asspect of your life. As I explained to her, you grieve. You grieve for the life you once knew, you grieve for your loss of functioning, you grieve for an income, you grieve for yourself as if you have died. Then there is this person, that you don't know, and don't want to be, standing there looking back at you in the mirror. You look the same, but every part of you is different, and unknown. It is one of the scariest places to be to not know who you are anymore!
You question everything in your life that you once knew. Your angry! Angry at your body, angry at yourself, angry at the doctors. The anger burns inside of you, and when it does, you create all this stress inside that makes you feel even worse. Then to have nobody to understand what you are going through is the hardest part. One day you can walk a mile, the next you can't get out of bed. Family sometimes have the hardest time, because they see you on a daily basis. It's like well, you did this yesterday, and now your saying you can't move because your in so much pain? They tend not to understand and need to be educated by you, your doctor, or just leave them articles to read!
Everything I have been through to this point has been a huge obstacle to overcome. Some days are better then others, but that pain is always there. Deep down inside you. You try to continue living the way you used to but it doesn't work anymore. You eventually come to the understanding that you have to make amends with your body, mind, and soul. Once you can do that, and let go of some that negative energy, you are able to at least deal with your life.
Knowing first that you never commit to something down the road is so important. Now is when you start living day to day, hour to hour, and your life becomes a little more managable. Destressing your life is not always possible, as I very well know, but if you can start managing your self, you can at least save some stress from happening.
I have a hard time with stress. I have a daughter who is ill, three grandbabies, and a husband who likes things a certain way. My life is full of stress! I tell them all the time, "we will see". It's my first words out of my mouth these days when asking if I would like to do something. My husband has gotten a lot better with it, but my daughter is so stressed herself these days, she doesn't hear what i am saying. So it gets hard for me.
Guilt is a huge problem when dealing with family and close friends. I always feel guilty even though I know I shouldn't. I am the person in my family that was somehow picked to be the go to person for any family problems. Even after I became disabled, I am somehow still that person. So when something needs to be down for my parents, I am there. I know how much they appreciate it, and I know they worry about me. I am the youngest of six kids, and I purchased 40 acres from my parents years ago. So I am close to them. Even though my two brothers are actually across the street from them, it is still me. My doctor tells me I am the glue of my family, all of it. He tells me to slow down, but then tells me if it weren't for me, who knows what my parents would do. So How do I stop being the go to person with that on my concious? I can't and I won't. So I take it on willingly knowing it isn't actually the healthiest thing for me to do.
Life isn't always easy, but at least I am living it.
Friday, October 29, 2010
Pain and Frustration
Waking up today was not a pleasant experience. Pain running through my neck and shoulders, down my shoulder blade and around my ribs. It is frustrating that this pain is always there, and only lets up here and there. I started having spasms last night, and by this morning it was exruciating! I can barely get my right arm to work. I went to brush my hair, lifted my arm, and it came flailing back down as the pain intensified and a severe spasm started.
For most people the thought of being in pain makes them cringe. They don't really understand what it is like for someone to be in pain all the time. Yes, we fake it and go on with our day, and we suffer in silence. Inside we are dying to scream out "Help Me"! But we don't. No matter what we are strong! Doctors say we are more susceptable to pain and we feel pain more then others. I don't by it! I know I can handle a lot of pain, and I don't say anything. I just keep going because that is what we are suppose to do right?
I grew up on a farm. I worked my ass off ever since I was a child. So to not be able to do simple tasks like brushing my hair, or brushing my teeth, frustrates me to no end! How do you explain that kind of pain to someone? They look at you like you are crazy and making it up. I can't or should I say don't tell my husband much anymore. I feel as if I am just complaining, and honestly he doesn't want to hear it! Not because he doesn't love me or care or thinks I'm faking, it's because he doesn't know what to do or say, and all he would like to do is fix it for me! He can't handle that I am in pain, and he can't do anything to help or fix it. He is a fixer, I think most men are. They like to fix the problem. I can't imagine the frustration he goes through on a daily basis knowing he can't fix it, he is the sole provider, and he has to take care of the house as well. I know it has to be overwhelming, and I feel guilty for that.
So yet again the guilt eats at me, even though I know that there was nothing I could do about it. I didn't ask to get sick. It wasn't part of my plan or our plan! We were suppose to be so active and go four wheeling , and hiking, and so much more! Now I am unable to do the things I enjoyed the most. I am not the person he married anymore, and at times I tend to push him away. His father was sick his whole life battling cancer. He was in and out of hospitals his whole life. My husband hates hospitals, and it triggers anger and anxiety for him. So now he is married to someone who is sick all the time and has had several major surgeries and is in and out of the hospital all the time! This is not the life he wanted, and I know this. I am so frustrated and at times I just hate myself for ruining his life. At least that is how I feel.
For most people the thought of being in pain makes them cringe. They don't really understand what it is like for someone to be in pain all the time. Yes, we fake it and go on with our day, and we suffer in silence. Inside we are dying to scream out "Help Me"! But we don't. No matter what we are strong! Doctors say we are more susceptable to pain and we feel pain more then others. I don't by it! I know I can handle a lot of pain, and I don't say anything. I just keep going because that is what we are suppose to do right?
I grew up on a farm. I worked my ass off ever since I was a child. So to not be able to do simple tasks like brushing my hair, or brushing my teeth, frustrates me to no end! How do you explain that kind of pain to someone? They look at you like you are crazy and making it up. I can't or should I say don't tell my husband much anymore. I feel as if I am just complaining, and honestly he doesn't want to hear it! Not because he doesn't love me or care or thinks I'm faking, it's because he doesn't know what to do or say, and all he would like to do is fix it for me! He can't handle that I am in pain, and he can't do anything to help or fix it. He is a fixer, I think most men are. They like to fix the problem. I can't imagine the frustration he goes through on a daily basis knowing he can't fix it, he is the sole provider, and he has to take care of the house as well. I know it has to be overwhelming, and I feel guilty for that.
So yet again the guilt eats at me, even though I know that there was nothing I could do about it. I didn't ask to get sick. It wasn't part of my plan or our plan! We were suppose to be so active and go four wheeling , and hiking, and so much more! Now I am unable to do the things I enjoyed the most. I am not the person he married anymore, and at times I tend to push him away. His father was sick his whole life battling cancer. He was in and out of hospitals his whole life. My husband hates hospitals, and it triggers anger and anxiety for him. So now he is married to someone who is sick all the time and has had several major surgeries and is in and out of the hospital all the time! This is not the life he wanted, and I know this. I am so frustrated and at times I just hate myself for ruining his life. At least that is how I feel.
Thursday, October 28, 2010
Managing Stress!
Where do I start. My life has so many stresses in it! Every time I turn around it's something else! I purchased a car recently and I can't get the DMV to transfer it into my name. There used to be a lien against it in New York. New York released the lien in 2002, but the DMV here is saying that it still has a lien. I even had a paper from the bank in New York, and they still won't let me! So now I have to fax a copy of the title to the bank so they can send another letter out addressed to me saying their is no lien! Sometimes I swear I have the worst luck. I also purchased a van recently that was used in a robbery, and then it got impounded a week later for having the wrong tabs on it. It had tabs for a ford pick up. Oh, and the plates were bad! So I had to put out $600 for the van a couple hundred for insurance, $173 for the impound lot, and $47 for plates and tabs just to have to buy new tabs in a couple months. Talk about frustrating.
Stress can make or break my day. Today is a horrible day. Trying to not stress out about the vehicle issues is hard. I keep having to do deep breathing, but it hurts to take in deep breaths. My back and ribs hurt so much. Not to mention my neck has been sore for at least a good week now. I am exhausted, and the weekend is on ts way and we are having company. I hope everyone understands. But if they don't, you know where they can go! LOL!
Stress can make or break my day. Today is a horrible day. Trying to not stress out about the vehicle issues is hard. I keep having to do deep breathing, but it hurts to take in deep breaths. My back and ribs hurt so much. Not to mention my neck has been sore for at least a good week now. I am exhausted, and the weekend is on ts way and we are having company. I hope everyone understands. But if they don't, you know where they can go! LOL!
Wednesday, October 27, 2010
Learning Patience
I have never been a fan of patience. At least I don't think so. But if you were to ask others they would say you have so much patience. I don't really. I hide everything from everyone until I can't hold it in anymore, and I either scream or cry . Not only that, but I like things done my way. If you do it wrong, I will go behind you and correct it. I never realized I did this until my daughter pointed it out to me one day.
The biggest challenge i have with patience these days is learning that I can't do things the way i used to. Simple things like trying to sweep the floors, drives me insane because I can't just do it and get it done. I have to take breaks, which is crazy to me. It hurts my arms and my legs go numb and burn in pain within a couple minutes. Then my ribs will spasm from my back around and under my breasts. Just from the sweeping motion. So I have to be patient, and take several breaks, and it takes me forever to get anything done! Then I am exhausted from sweeping of all things, and I am done for the day then.
It is crazy how much chronic pan has changed my life! With everything I do, it takes so much longer to get anything accomplished. Patience is something you must have or you can drive yourself crazy. I do this to myself a lot. But I am learning. That is the best I can do.
The biggest challenge i have with patience these days is learning that I can't do things the way i used to. Simple things like trying to sweep the floors, drives me insane because I can't just do it and get it done. I have to take breaks, which is crazy to me. It hurts my arms and my legs go numb and burn in pain within a couple minutes. Then my ribs will spasm from my back around and under my breasts. Just from the sweeping motion. So I have to be patient, and take several breaks, and it takes me forever to get anything done! Then I am exhausted from sweeping of all things, and I am done for the day then.
It is crazy how much chronic pan has changed my life! With everything I do, it takes so much longer to get anything accomplished. Patience is something you must have or you can drive yourself crazy. I do this to myself a lot. But I am learning. That is the best I can do.
Monday, October 25, 2010
Rainy Days
Rainy days always seem to be the worst for me. The cold, damp air creeps into my bones, and hides in the crevices and it seems impossible to warm them up! Although the aches and spasms start a couple days before the rain comes. I always seem to know when the weather is changing, as the old farmers would say"I can feel it in my bones".
Oddly enough, the pain I speak about is so intense, I do not feel that others can truly comprehend how I feel. To explain it is awkward, because no words can do justice for how I feel. It's so much easier to smile and say I'm fine, then having to explain, after all, I don't look sick on most days. I can't remember a day that I wasn't in pain in one way or another ever since I was a child.
As a child I hid everything. No one could know anything. I was always fine. And as I got older I held on to that message that was created for me. But hiding your pain, whether physical or emotional, your bound to snap sooner or later. We are not meant as human beings to cage everything up inside of us.
When I snapped, my world was turned upside down, and I was the one who did it. I was angry, very angry. I hated the world and blamed everyone around me for all the pain I had experienced. My new motto was never let anyone get too close, and hurt them before they hurt you. How ugly is that?
I still hold things in, but now I cry. I cry for comfort, I cry for understanding, and I cry for that child I used to be. Wishing for a life I have never really known, and never will. Grieving for a life I felt cheated from. Already knowing what to expect from my life, a sentence of pain.
Is it possible to get past the grief and move on? YES! I live each day to fullest that I am able, and any accomplishment, no matter if it is just doing one load of laundry, is a victory! Just because chronic pain is part of my life, I don't have to let it control me. It may to a point, but I am here and I will be here tomorrow still accomplishing something! Even if these victories are only seen by me, they are still victories, and I will take that. Some days it is just mustering up enough energy to get out of bed and get dressed. But that's ok. Do I give in sometimes? Yes, I think we all do, but i still do the best that I am able to for that day. And if know one else can see that it is my best, to hell with them. They are on my mean list for the day!
Meds are a natural part of my life now. I used to hate taking any kind of pill and had a really bad gag reflex. Now I'll take five at a time no problem. It would be nice if just one would help, but of course i take a cocktail of them. But it was worse when i took nothing so I take them faithfully now. I did my own experimenting with them, and I take them right now. I could not imagine not having insurance, I am already paying $300 out a month in meds. My insurance isn't that great, but at least it's something.
So for now, I am exhausted. went to bed late last night and was up early this morning. I feel it is time to rest. But I accomplished putting up my blog! And that is good enough for me!
Oddly enough, the pain I speak about is so intense, I do not feel that others can truly comprehend how I feel. To explain it is awkward, because no words can do justice for how I feel. It's so much easier to smile and say I'm fine, then having to explain, after all, I don't look sick on most days. I can't remember a day that I wasn't in pain in one way or another ever since I was a child.
As a child I hid everything. No one could know anything. I was always fine. And as I got older I held on to that message that was created for me. But hiding your pain, whether physical or emotional, your bound to snap sooner or later. We are not meant as human beings to cage everything up inside of us.
When I snapped, my world was turned upside down, and I was the one who did it. I was angry, very angry. I hated the world and blamed everyone around me for all the pain I had experienced. My new motto was never let anyone get too close, and hurt them before they hurt you. How ugly is that?
I still hold things in, but now I cry. I cry for comfort, I cry for understanding, and I cry for that child I used to be. Wishing for a life I have never really known, and never will. Grieving for a life I felt cheated from. Already knowing what to expect from my life, a sentence of pain.
Is it possible to get past the grief and move on? YES! I live each day to fullest that I am able, and any accomplishment, no matter if it is just doing one load of laundry, is a victory! Just because chronic pain is part of my life, I don't have to let it control me. It may to a point, but I am here and I will be here tomorrow still accomplishing something! Even if these victories are only seen by me, they are still victories, and I will take that. Some days it is just mustering up enough energy to get out of bed and get dressed. But that's ok. Do I give in sometimes? Yes, I think we all do, but i still do the best that I am able to for that day. And if know one else can see that it is my best, to hell with them. They are on my mean list for the day!
Meds are a natural part of my life now. I used to hate taking any kind of pill and had a really bad gag reflex. Now I'll take five at a time no problem. It would be nice if just one would help, but of course i take a cocktail of them. But it was worse when i took nothing so I take them faithfully now. I did my own experimenting with them, and I take them right now. I could not imagine not having insurance, I am already paying $300 out a month in meds. My insurance isn't that great, but at least it's something.
So for now, I am exhausted. went to bed late last night and was up early this morning. I feel it is time to rest. But I accomplished putting up my blog! And that is good enough for me!
Sunday, October 24, 2010
Continued
So Life is so confusing at times. I walk around in what they call "Fibro Fog" all the time. I can have a conversation with you and five minutes later have no idea I had the conversation let alone what was said! This of course is on moderate to severe days. Then your medicated on top of it, and it gets really bad.
When I think back to when I was a child and young preteen, I remember having such bad growing pains. I would cry it hurt so bad. I would sit and hold my legs tight to my chest. Then my daughter went through the same thing, and now my oldest grandson is the same way. It makes me think, could this be an indication of FM as a child? I had problems sleeping since a child as well. I see some of the same attributes in my daughter now. Insomnia, depression, no energy, anxiety, IBS, being in a fog, unable to get up and fuction right away. And the knots in her back are the same as the tender points for diagnosing FM. It scares me to death to think I may have passed this trait on to my child, and possibly her children. Guilt is the word that comes to mind. Even though I know if they do get it, it's not my fault, but the guilt will definately be there. Any parent would feel the same way i think.
But this is a good example of what I do with everything in my life! I worry about the what if's, and it could happen things that do nothing but drain my energy. Wasted energy as my counselor would tell me. I know not to let things go to that point. I need to stay in the moment that I am in. This is not an easy thing for me to do. But I work hard at it everyday, and trust me, it is work!
When I think back to when I was a child and young preteen, I remember having such bad growing pains. I would cry it hurt so bad. I would sit and hold my legs tight to my chest. Then my daughter went through the same thing, and now my oldest grandson is the same way. It makes me think, could this be an indication of FM as a child? I had problems sleeping since a child as well. I see some of the same attributes in my daughter now. Insomnia, depression, no energy, anxiety, IBS, being in a fog, unable to get up and fuction right away. And the knots in her back are the same as the tender points for diagnosing FM. It scares me to death to think I may have passed this trait on to my child, and possibly her children. Guilt is the word that comes to mind. Even though I know if they do get it, it's not my fault, but the guilt will definately be there. Any parent would feel the same way i think.
But this is a good example of what I do with everything in my life! I worry about the what if's, and it could happen things that do nothing but drain my energy. Wasted energy as my counselor would tell me. I know not to let things go to that point. I need to stay in the moment that I am in. This is not an easy thing for me to do. But I work hard at it everyday, and trust me, it is work!
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| My daily life cycle! |
Another day
Another day of being medicated! I hate taking pain meds, I feel so loopy! I was up and down all night, could't sleep. I hate nights like that. Got up fairly early and started cleaning my dining table off, which had became the catch all when we did our living room floor a couple months ago. It's not like there was much to clear, but I didn't know where to put anything, so I just left it there. My husband was not happy. We never have a sit done dinner anyways because he works second shift, and drives 72 miles one way. So I am always alone in the evening.
Right now I am frustrated with my life. As you can see from my earlier blogs, I have been through a lot. I am having problems managing what I can do, compared to what I used to be able to do, and shouldn't do anymore. Ughh... I hate the fact that I can't do certain things without paying a major price for it! I do things I am not suppose to do, just to prove to myself that I am able to be functional! But I always pay for it for a few days! It gets so fustrating, and sometimes my husband really doesn't get it. So therefore an argument insues and it is just draining. I just say ok, and give in because I don't have the energy to argue. I feel at times it is pointless.
Right now I am frustrated with my life. As you can see from my earlier blogs, I have been through a lot. I am having problems managing what I can do, compared to what I used to be able to do, and shouldn't do anymore. Ughh... I hate the fact that I can't do certain things without paying a major price for it! I do things I am not suppose to do, just to prove to myself that I am able to be functional! But I always pay for it for a few days! It gets so fustrating, and sometimes my husband really doesn't get it. So therefore an argument insues and it is just draining. I just say ok, and give in because I don't have the energy to argue. I feel at times it is pointless.
Saturday, October 23, 2010
Life’s Journey (continued)
So basically I have gone through life with what I would say is “victim” stamped on my forehead. Anything that could possibly happen, has happened to me. Emotional, physical, and sexual abuse. I was a sickly child, that grew up on a farm, so there was actually no time to be sick.
My first memories of child hold were not of birthday parties or family vacations, but of being molested. Believe it or not I was only two,and the memory is like yesterday. I was told that you can not remember things from that young of an age, but I can. I remember everything, the pain, the smell, and threats.
Years of abuse took place for me, but I would hide in my mind and try to not be in the present until it was over. I remember a second person who molested me when I was in Kindergarten. He threatened my life and the life of my new born niece. I told him I wouldn’t tell because “my grandfather does this too, and I would never tell.”
Eventually at age 14, I snapped. I found my best friend in bed with my boy friend at a party. I lost it. I literally had a nervous break down and ended up in the hospital. Days later when they finally released me I had to go back to school and face them both. that was something I did not want to do, but I did.
I remember everyone in school was saying I overdosed on cocaine or something like that. I had never touched any drugs in my life! There was one person who stuck up for me, he had done this once before in fourth grade. TS you will always have my heart for that. I was embarrassed, and panic stricken. I did not want to be there, so I ran. I left school, and no one noticed.
Unfortunately, I my grandfather was coming for a visit, and I knew what that meant. I was different now though. This time things did not go his way. Sad to say, but I beat the crap out of him, and left the house.
I ran away the next day with my friend. We ended up at a friends house a few towns away. Her mom was pretty suspicious so we ended up leaving and finding shelter behind a bakery that had some huge boxes we used to block the wind and rain. The next morning we decided to call her dad and go home.
My parents were so angry, as well as they should have been. they didn’t know what was going on with me. My mom put me in counseling, where I just sat there and didn’t talk. I was afraid and ashamed. I didn’t want anyone to know. Eventually she just stopped bringing me.
I started hanging around some other people that previously I would not have. I was back with my boy friend for our on again, off again relationship. But now my grandfather was coming again, but this time I was not going to be there. I left. A friend and I headed to the Twin Cities and it all went down hill from there.
I don’t have much recelection of what all happened, but I remember waking up in a group home with black hair! I am a very white girl with blonde hair. It did not look good at all! This is when the abuse came out about my grandfather, but not my brother in law. I was still ashamed, and embarrassed.
From there on out I was mean. I used to be a shy, timid girl. Now I was just Mean, angry at the world and everyone in it. Now I was the one beating up the girl who used to beat me up everyday at school. My attitude was I am going to hurt you before you hurt me.
Friday, October 22, 2010
Life's Journey
My life has been quite a journey. I am only 41, and my body feels as though I am 141! I have no energy. I ache all over and I tend to keep it to myself. My head hurts, my joints ache, my muscles spasm.
I have fibromyalgia, and it wants to take over. Most days I ignore the ugly beast as much as I can until the exhaustion is more then I can take. I collapse or retreat to my room. I feel alone most of the time, not being able to explain exactly how I feel. And I am tired of trying.
I have fibromyalgia, and it wants to take over. Most days I ignore the ugly beast as much as I can until the exhaustion is more then I can take. I collapse or retreat to my room. I feel alone most of the time, not being able to explain exactly how I feel. And I am tired of trying.
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