Today my mother travels a long way to come and stay for a week. I think of all the struggle she has been through the last few years taking care of her own mom and now finally her mother is in a home being well cared for. Even though this was necessary and what is best my mom is very upset about the whole ordeal. She wears her emotions outwardly and has become better at sharing her burden of taking care of a parent who is mentally not there any longer. I am glad she will come and rest and I can't imagine the stress she leaves behind. I don't know what to expect while she is here because, I myself know, that when you leave behind a very high situation ….high stress, anxiety and the load you carry, and you come off that high, it tends to be a crash.
I am hoping she is able to breath easy for a bit and know that she has support here for anything she wants to talk about.
It is hard being so different form my mother. We have always been so very different. It makes it hard for me to understand why she feels she must go on suffering with her own chronic pain and not rely on modern medicine to help her even though natural medicine only takes care of maybe 5% of what she deals with daily. It does help but she needs so much more to help carry her through her depressions and moods.....and yes pain.
This issue of pain runs deep in my family. Just like the force in Star wars. LOL. It Is something we all know on some level. How we all deal with it well that is all very different from one to one.
I do think that how a person deals with pain and what they do it is what defines them. If they are not able to know what to do with the pain in their lives it says something about them to ask for help or get help to learn coping techniques. It says they are wise and wish a better life for themselves and those close around them.
This issue of pain whether emotional or physical and so often both and related....is such a mystery to us. Keep opening your mind and eyes wider and you will see a connection in yourself. I feel that every day that goes by I notice something else that is a connection or a key to my pain where I am able to cope so much better or just to live on through it and not give up.
Wednesday, September 28, 2011
one VERY lonely day - the cards I've been delt
I am having a very lonely day. The longer I am here in the new town I have moved to the worse I feel about my ability to help those i love. Nothing feels more helpless than to feel your words and advice are valueless. There was a moment today when I was remembering when I had friends to confide in and talk that lived just down the street. I am feeling old and burnt out on making friends and seeing it much more difficult than I thought it would be. Plus, wants new ones when you have great old ones who are just very busy with their own lives.
The question of “why” has been here it seams forever. Why me? Why do I feel so sad sometimes. It isn't an irrational way to feel about my life and how it's turned out. It really has taken the less-traveled path.
That's how it has been going for years. Life takes me to unlucky places. It hands me hardship and pain and not much forgiveness or understanding. Why? what I've done to deserve such bad luck and path. I want to know.
I, like anyone else, need support but because I am proud I don't ask. I see myself the way I always was....strong...physically and mentally. It brings me down to see myself the way I am now. Searching for someone who can support you may seam so simple. Look to your right side...your sig other.
My voice feels silenced and misunderstood from the only person who could possibly hear it. My sig other lives in a world self-created and built of things real and imagined. When do I know if he is there for me or not? Does he hear me through that blank stair when I tell him I'm in pain. When I tell him I am in physical pain he might say "are you alright" but mostly he just keeps staring. Maybe he is tired of hearing it. Doesn't he think I am tired of being in it? I am!I am tired of saying it.
I am exhausted of the energy it takes to not let it get me down. It is easier to just give in and feel really bad about how tortured I am and feel sad for myself sometimes. I make myself sick thinking about how I wish things were (in the past) and not accepting how they are now. Mostly I do pretty well with acceptance but today …...is a bad day.
The question of “why” has been here it seams forever. Why me? Why do I feel so sad sometimes. It isn't an irrational way to feel about my life and how it's turned out. It really has taken the less-traveled path.
That's how it has been going for years. Life takes me to unlucky places. It hands me hardship and pain and not much forgiveness or understanding. Why? what I've done to deserve such bad luck and path. I want to know.
I, like anyone else, need support but because I am proud I don't ask. I see myself the way I always was....strong...physically and mentally. It brings me down to see myself the way I am now. Searching for someone who can support you may seam so simple. Look to your right side...your sig other.
My voice feels silenced and misunderstood from the only person who could possibly hear it. My sig other lives in a world self-created and built of things real and imagined. When do I know if he is there for me or not? Does he hear me through that blank stair when I tell him I'm in pain. When I tell him I am in physical pain he might say "are you alright" but mostly he just keeps staring. Maybe he is tired of hearing it. Doesn't he think I am tired of being in it? I am!I am tired of saying it.
I am exhausted of the energy it takes to not let it get me down. It is easier to just give in and feel really bad about how tortured I am and feel sad for myself sometimes. I make myself sick thinking about how I wish things were (in the past) and not accepting how they are now. Mostly I do pretty well with acceptance but today …...is a bad day.
Sunday, September 18, 2011
Mental illness and it's part in my pain.
When for a moment you get a little peak at what you loved about being you long ago before the illness you can only remember fondly how nice it was to be you. I start wondering why did I ever hate myself? Why did I always wanna be different and someone else?
I don't understand how that works. We aren't grateful for what we have when we have it.
I get a small door of time when I also see who my sig other was when I married him. He was a different man then. He was confident but not cocky and smart (as all knew and could tell around him). He was so observant of himself and what other's needed. Maybe he even gave away too much of himself in order to make us all happy. He was a handsome and well put-together man. Clean cut and well dressed he cared how he presented himself to the world. He had pride. As he should have.
After the mental illness took affect 5 plus years ago he became totally different. As you can imagine the illness was powerful and he became week to it's chemical control over his brain. He became angry and resentful of all around him and distrusting. He became sad and unsure of himself and ashamed. This was the hardest and has been the hardest to see. He was so ashamed and felt guilty of so many wrongs. Even though this illness isn't something he created he felt responsible. Once on meds he realized what was going on. It wasn't like with a mentally challenged individual who is happy and oblivious to their disability. It was a man who knew he was different and a man who was fighting against it with all his might. He was defenseless for a while and it beat him down. He was tired of fighting every day to be "normal" and he was ready to give up.
I don't blame him. I can't possibly understand in fullness but I do know that as he learned coping techniques and in continuing his journey it became easier to control his thoughts and mind and explain to himself what was real and what was his brain chemistry manifesting itself as strange perceptions.
This is what was happening to him. However, THIS was tearing me apart emotionally and physically. There was not much I could do during the time he was in such struggle and I, myself, was suffering from illness as well. My illness and pain only reflected the unhappiness and challenges in our lives. It was a radar to how our lives were going. The pain would get worse whether I realized it was a reflection of how upset I was about his illness and then I was powerless to even hug him or offer verbal assurance.
When finally he was admitted in to mental care I felt numb. I had been feeling so overwhelmed and so week and beat down. I was so depressed about both our situations. Now, I was numb and in shock. I would go daily to visit a very sad and scared man. He looked so out of place in that facility. My man...my strong man, didn't belong there. But...alas..he didn't look strong. He didn't look the same. He wasn't himself at all and was battling a war that would go on and off for the rest of his life.
I didn't sleep at night. I tossed and turned thinking about what he must be going through sleeping in that place. I was in so much pain the nausea didn't allow me to eat and I was crying and rocking myself by the bedside wishing God would take me now. It was years ago all over again when things had started with my pain that was unceasing. I wonder what started it then. Was it something emotional, like now, that I was clueless to understand. Maybe.
When he finally did come home after a week in the facility I was relieved he was back under our roof but i was scared to death that at any moment I might be driving him to the ER because at any moment he might decide it was all to much and take his own life. That fear has been with me every day after that time. It isn't something you forget and it isn't something you wish you could control.
I wish that I could know that something I might do would prevent him from ever taking action against himself again. However,....there isn't. So, I must let go. In letting go I give in to the powers that be and I say that whatever happens was meant to happen that way.
I don't understand how that works. We aren't grateful for what we have when we have it.
I get a small door of time when I also see who my sig other was when I married him. He was a different man then. He was confident but not cocky and smart (as all knew and could tell around him). He was so observant of himself and what other's needed. Maybe he even gave away too much of himself in order to make us all happy. He was a handsome and well put-together man. Clean cut and well dressed he cared how he presented himself to the world. He had pride. As he should have.
After the mental illness took affect 5 plus years ago he became totally different. As you can imagine the illness was powerful and he became week to it's chemical control over his brain. He became angry and resentful of all around him and distrusting. He became sad and unsure of himself and ashamed. This was the hardest and has been the hardest to see. He was so ashamed and felt guilty of so many wrongs. Even though this illness isn't something he created he felt responsible. Once on meds he realized what was going on. It wasn't like with a mentally challenged individual who is happy and oblivious to their disability. It was a man who knew he was different and a man who was fighting against it with all his might. He was defenseless for a while and it beat him down. He was tired of fighting every day to be "normal" and he was ready to give up.
I don't blame him. I can't possibly understand in fullness but I do know that as he learned coping techniques and in continuing his journey it became easier to control his thoughts and mind and explain to himself what was real and what was his brain chemistry manifesting itself as strange perceptions.
This is what was happening to him. However, THIS was tearing me apart emotionally and physically. There was not much I could do during the time he was in such struggle and I, myself, was suffering from illness as well. My illness and pain only reflected the unhappiness and challenges in our lives. It was a radar to how our lives were going. The pain would get worse whether I realized it was a reflection of how upset I was about his illness and then I was powerless to even hug him or offer verbal assurance.
When finally he was admitted in to mental care I felt numb. I had been feeling so overwhelmed and so week and beat down. I was so depressed about both our situations. Now, I was numb and in shock. I would go daily to visit a very sad and scared man. He looked so out of place in that facility. My man...my strong man, didn't belong there. But...alas..he didn't look strong. He didn't look the same. He wasn't himself at all and was battling a war that would go on and off for the rest of his life.
I didn't sleep at night. I tossed and turned thinking about what he must be going through sleeping in that place. I was in so much pain the nausea didn't allow me to eat and I was crying and rocking myself by the bedside wishing God would take me now. It was years ago all over again when things had started with my pain that was unceasing. I wonder what started it then. Was it something emotional, like now, that I was clueless to understand. Maybe.
When he finally did come home after a week in the facility I was relieved he was back under our roof but i was scared to death that at any moment I might be driving him to the ER because at any moment he might decide it was all to much and take his own life. That fear has been with me every day after that time. It isn't something you forget and it isn't something you wish you could control.
I wish that I could know that something I might do would prevent him from ever taking action against himself again. However,....there isn't. So, I must let go. In letting go I give in to the powers that be and I say that whatever happens was meant to happen that way.
The Ups -n-downs struggle in life.
So, when you are going through your week do you too have ups and downs that are totally unexplainable. Moods. I sure do. It is a constant struggle to understand my body. My cranky moods mostly come with my pain but some days I find myself really hating first myself and then others. It is a battle to get back to feeling like I can do anything that day. leave the house, clean the house, make food, clean up after making food. ....even just go out and pick up meds at the pharmacy that are needed.
Why is it so very hard sometimes to pull oneself together?
When my sig other is feeling bad I am feeling so so much worse than usual and can barely be well enough to help him out. He doesn't want my help...or doesn't think he does but still that is what us sig others are there to do. We are there to raise each other up.
I feel as though I just want to understand the why of my chemistry. Why am I this way and other people not? I certainly have some kind of chemistry roller coaster going. I've known this since I was very young. My concern gets expressed through anger and lashing out toward my sig other. I feel guilty after the mean and shocking things I say . Then I am beating myself up just moments later about the whole display wondering why I am taking out my frustrations on something whom I care so much about. Next day I may feel totally at peace and at ease but don't have the courage to apologize for the nasty things I said the day before.
What is this horrible cycle? The depression meds only help somewhat with these ups and downs. I can see that his ups and downs due to his mental condition are much worse. Mine might vary from day to day but his might vary from half hour to half hour. It makes for a volatile pair sometimes. If neighter one of us can explain our actions but only know how we feel and are having a hard time being mindful about it and control ourselves...well it makes for a mess.
What to do?
Life brought us together for some reason. Probably because in the long story of the two of us we are both missing something. we are both sick and struggling and can understand pain in several ways. However, is it right that we stay together even though things for us are always running in such a up and down flow all the time. Day to night we don't get breaks from our selves and that leads to resentment. Is it healthy? Sometimes these are questions that I see not being answered by our therapist. I see that these questions are something we must desifer on our own. Are we okay for each other...healthy for one another? We do the best we can to support one another but many times one of us is down and nonfunctional to be the support the other needs. Does this bring on the strength in the other one because they are forced to deal with the struggle alone? Maybe it does. We can't always lean and lean....we must pick ourselves up.
Some days I just want a strong and put-together person to be there for me and tell me it will be okay. That "they" will stand up for me and I can just take a deep breath cuz they have it under control.
Why is it so very hard sometimes to pull oneself together?
When my sig other is feeling bad I am feeling so so much worse than usual and can barely be well enough to help him out. He doesn't want my help...or doesn't think he does but still that is what us sig others are there to do. We are there to raise each other up.
I feel as though I just want to understand the why of my chemistry. Why am I this way and other people not? I certainly have some kind of chemistry roller coaster going. I've known this since I was very young. My concern gets expressed through anger and lashing out toward my sig other. I feel guilty after the mean and shocking things I say . Then I am beating myself up just moments later about the whole display wondering why I am taking out my frustrations on something whom I care so much about. Next day I may feel totally at peace and at ease but don't have the courage to apologize for the nasty things I said the day before.
What is this horrible cycle? The depression meds only help somewhat with these ups and downs. I can see that his ups and downs due to his mental condition are much worse. Mine might vary from day to day but his might vary from half hour to half hour. It makes for a volatile pair sometimes. If neighter one of us can explain our actions but only know how we feel and are having a hard time being mindful about it and control ourselves...well it makes for a mess.
What to do?
Life brought us together for some reason. Probably because in the long story of the two of us we are both missing something. we are both sick and struggling and can understand pain in several ways. However, is it right that we stay together even though things for us are always running in such a up and down flow all the time. Day to night we don't get breaks from our selves and that leads to resentment. Is it healthy? Sometimes these are questions that I see not being answered by our therapist. I see that these questions are something we must desifer on our own. Are we okay for each other...healthy for one another? We do the best we can to support one another but many times one of us is down and nonfunctional to be the support the other needs. Does this bring on the strength in the other one because they are forced to deal with the struggle alone? Maybe it does. We can't always lean and lean....we must pick ourselves up.
Some days I just want a strong and put-together person to be there for me and tell me it will be okay. That "they" will stand up for me and I can just take a deep breath cuz they have it under control.
Wednesday, September 7, 2011
The diagnosis.
"You don't look sick is the thing I don't understand."
No, I don't "look" like I am bleeding out of my head and shoulders or that my body hurts all over or my head might just pop off at any moment. This is the truth. I can understand that people around me wonder what is wrong with me when I say I'm disabled and they stare at me checking for wounds. Relating to pain beyond belief with no blood took me a long time to accept as well.
The questions for my doctors and from them were always ones that said "why is she in pain...what is causing the pain...and how do we stop it?" After seven years or so the answer seams to be just as allusive as the problem.
The consensus is "nerve damage...neuropathy". My nerves send pain signals to my brain from my neck, head and shoulders and muscle spasms develope in what they call the pain-spasm cycle.
Cycle meaning that one causes the other and the other feeds the one. I don't expect anyone, even my doctors, to understand the pain. Even after all this time of pain I am stunned with it's persistence some days and it (I admit) gets me down.
I want so badly to regain some of the physical strength that I was so proud of all those years ago. I yearn to be even just a snap shot of the strength that I was honored to have.
It was one day that I was driving to work, to a photography shoot, and was excited to meet my clients and take amazing images for them. It was the next day that I was not able to look at the road on my way to work because my eyes felt like hot needles were prying them out of my head. I was clueless to what this meant for my future. It meant that I would never....ever...be the same again.
I was so focused on my career then and taking handfuls of advil, asprin and alleve just to make it through the day. I wasn't aware of how much I was taking or how bad the pain was until someone pointed out the stash of empty bottles that had accumulated in my personals box at work.
When I think back on what led up to that moment in time when my body shut down and over a period of several weeks I went into neurological overload....I remember clearer now than ever the signs that I was in trouble and my body needed help.
My savior was a neurologist. He was caring and atentive and understood the importance of "quality of life". He tried so many different combinations of medications trying to still the muscles in my neck and scare the migraines away. The best he could do is exactly what he did. Still there became need for so many other doctors to step in and do tests and treat me for diagnosis as it came about.
First discovery: blood disease. Second: headache and migraines. third: neuropathy
All these treatments and not one of my doctors asked me how I was feeling mentally. Not at first. They all sent me for testing and ordered pills but no one knew that my sense of identity, pride and happiness were all crumbling away. After three years I was in full on depression about my situation. At that time my husband also seamed to be going through his own crisis. He was so supportive for as long as he could be and then when his personal battle with mental illness became to much to bear he became less and less able to be a part of my trips to the doctors and treatments and even just companionship.
I would look back into the very beginning when my pain started and within a few weeks of me barely able to make it to work I had suffered a near death experience. It had been an anaphylaxis incident. I would think "why didn't the universe take me then?" It was clear that things were only going to get worse with me being barely able to take care of myself and now my husband in some other world of his own. Yes, there were thoughts of death and many days of wondering "why me". There was also a new diagnosis to add into the three above....depression and anxiety.
Now, I look back and am glad I stuck it out but this really was just the beginning of learning about pain and how it would integrate into my daily life . what would I do with it?
No, I don't "look" like I am bleeding out of my head and shoulders or that my body hurts all over or my head might just pop off at any moment. This is the truth. I can understand that people around me wonder what is wrong with me when I say I'm disabled and they stare at me checking for wounds. Relating to pain beyond belief with no blood took me a long time to accept as well.
The questions for my doctors and from them were always ones that said "why is she in pain...what is causing the pain...and how do we stop it?" After seven years or so the answer seams to be just as allusive as the problem.
The consensus is "nerve damage...neuropathy". My nerves send pain signals to my brain from my neck, head and shoulders and muscle spasms develope in what they call the pain-spasm cycle.
Cycle meaning that one causes the other and the other feeds the one. I don't expect anyone, even my doctors, to understand the pain. Even after all this time of pain I am stunned with it's persistence some days and it (I admit) gets me down.
I want so badly to regain some of the physical strength that I was so proud of all those years ago. I yearn to be even just a snap shot of the strength that I was honored to have.
It was one day that I was driving to work, to a photography shoot, and was excited to meet my clients and take amazing images for them. It was the next day that I was not able to look at the road on my way to work because my eyes felt like hot needles were prying them out of my head. I was clueless to what this meant for my future. It meant that I would never....ever...be the same again.
I was so focused on my career then and taking handfuls of advil, asprin and alleve just to make it through the day. I wasn't aware of how much I was taking or how bad the pain was until someone pointed out the stash of empty bottles that had accumulated in my personals box at work.
When I think back on what led up to that moment in time when my body shut down and over a period of several weeks I went into neurological overload....I remember clearer now than ever the signs that I was in trouble and my body needed help.
My savior was a neurologist. He was caring and atentive and understood the importance of "quality of life". He tried so many different combinations of medications trying to still the muscles in my neck and scare the migraines away. The best he could do is exactly what he did. Still there became need for so many other doctors to step in and do tests and treat me for diagnosis as it came about.
First discovery: blood disease. Second: headache and migraines. third: neuropathy
All these treatments and not one of my doctors asked me how I was feeling mentally. Not at first. They all sent me for testing and ordered pills but no one knew that my sense of identity, pride and happiness were all crumbling away. After three years I was in full on depression about my situation. At that time my husband also seamed to be going through his own crisis. He was so supportive for as long as he could be and then when his personal battle with mental illness became to much to bear he became less and less able to be a part of my trips to the doctors and treatments and even just companionship.
I would look back into the very beginning when my pain started and within a few weeks of me barely able to make it to work I had suffered a near death experience. It had been an anaphylaxis incident. I would think "why didn't the universe take me then?" It was clear that things were only going to get worse with me being barely able to take care of myself and now my husband in some other world of his own. Yes, there were thoughts of death and many days of wondering "why me". There was also a new diagnosis to add into the three above....depression and anxiety.
Now, I look back and am glad I stuck it out but this really was just the beginning of learning about pain and how it would integrate into my daily life . what would I do with it?
Tuesday, September 6, 2011
Adaptation
I have to look at this as an opportunity to learn what is beneficial to suffering. Yes, there is strength that is to be gained and incite into how others might live so differently from the average populous. Mostly it is the realization that the struggle to do every day tasks wasn't going to get easier and so I needed to adapt.
Adaptation:
We don't want to change. We want things to come easily and to not change is the most easy of them all choices. However, in my case if I still wanted to get in my car and go to a store there were adaptations that were needed to make this happen just as with many other activities in my life. At first it was a fight. I was angry. I felt like I would never again leave my house because it was so hard to TRY and find a way NOT to be in pain or have a migraine while out and about.
Eventually I realized some little tricks to the avoidance of migraine and pain.I was able to drive again and be in some stores for short periods. If you are a migrainer you know that travel in any moving vehicle isn't a good thing. Nausea and sometimes migraine/ pain accompany this ride.Part of my personal situation involves avoiding direct contact to florescent lights. A hat each and every time I go under them is needed. So, I wear it. It is part of my fashion now.
I attempted to do the same things I had as my previous self but I realized with sadness at first, and acceptance later, that I must adapt. These activities did not have to completely leave my life. A thing to be glad for.
Adaptation:
We don't want to change. We want things to come easily and to not change is the most easy of them all choices. However, in my case if I still wanted to get in my car and go to a store there were adaptations that were needed to make this happen just as with many other activities in my life. At first it was a fight. I was angry. I felt like I would never again leave my house because it was so hard to TRY and find a way NOT to be in pain or have a migraine while out and about.
Eventually I realized some little tricks to the avoidance of migraine and pain.I was able to drive again and be in some stores for short periods. If you are a migrainer you know that travel in any moving vehicle isn't a good thing. Nausea and sometimes migraine/ pain accompany this ride.Part of my personal situation involves avoiding direct contact to florescent lights. A hat each and every time I go under them is needed. So, I wear it. It is part of my fashion now.
I attempted to do the same things I had as my previous self but I realized with sadness at first, and acceptance later, that I must adapt. These activities did not have to completely leave my life. A thing to be glad for.
Monday, September 5, 2011
Someone so young with so much pain.
It started many years ago with pain and suffering that doctors had no idea what the cause was. It included migraines, muscle spasms, and everything neurologically that comes with migraines. ( nausea, vomiting, bed care) . I was 27.
For me it was the start of a relationship I never could have anticipated with come to me ...ever. My relationship with pain. For me the pain started as a physical pain yes but the more years that passed by and the longer it stuck around it became depression and despair at all I had lost due to pain.
Many will understand I am sure, what it is like to be fine one moment and have the onset of something so serious and so life changing that you become someone else. The person you were without suffering or pain is no longer there. You barely remember what that person was like. In wishing things could change you search and search for a remedy or even just an analgesic to ease the agony but such things are just fairy dreams.
When you realize that you must accept this status change you go about altering how you do things in your life and how much you are able to do in a day. You simplify and it seams to help.
Now having given up so much--carrier, sex, physical activity, and a carefree style I am forced to search within myself to find my inner peace with the cards I have in my hand now.
For me it was the start of a relationship I never could have anticipated with come to me ...ever. My relationship with pain. For me the pain started as a physical pain yes but the more years that passed by and the longer it stuck around it became depression and despair at all I had lost due to pain.
Many will understand I am sure, what it is like to be fine one moment and have the onset of something so serious and so life changing that you become someone else. The person you were without suffering or pain is no longer there. You barely remember what that person was like. In wishing things could change you search and search for a remedy or even just an analgesic to ease the agony but such things are just fairy dreams.
When you realize that you must accept this status change you go about altering how you do things in your life and how much you are able to do in a day. You simplify and it seams to help.
Now having given up so much--carrier, sex, physical activity, and a carefree style I am forced to search within myself to find my inner peace with the cards I have in my hand now.
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