Oh boy.
I have so much school work due. Big project/paper type school work...
Every night that passes and I haven't worked on it feels one step closer to failure. Not failure by normal standards, but by my own of course.
Tonight my hands and arms are very weak. Typing is hard, my forearms hurt like crazy. My neck/shoulder is twitching some kind of mad. My head feels full, and I keep getting lost, confused.
I can't even imagine trying to do school work right now. I can't even remember what I ate today, much less be able to write a scholarly research paper on minimizing reality shock in the new graduate nurse orientee. Man, I can't even remember the title right... Arg!!!! I am feeling highly frustrated at this moment at the thought of last minute shoddy work because my brain is mush. That's right. You ever see tapioca pudding? Well, that's my brain right now.
I'm even afraid to pick up my new phone because my hands are so weak. I can hardly grip the mouse, so I can imagine my shiny new phone hitting the floor and meeting it's doom...
Sorry. I am ranting and raving. Mostly because I am procrastinating trying to start on these papers because I know I can't functionally do it right now. Only I don't know when I will be able to because it has been this way for days. It's easy to regurgitate information. But I have to make this mine, only mine will be a jumbled bunch of mess. Kind of like this post...
Monday, March 28, 2011
Sunday, March 27, 2011
Mitochondria Mayhem
In some ways I am still in denial about this "deterioration", to quote my doc. Sometimes it seems easier to deny the situation than to try and understand it fully. Sometimes I think, well maybe I am just crazy, but then the symptoms come back like a whirlwind and I realize that I am in no way crazy.
One of my FB acquaintances quoted the head of the United Mitochondrial Disease Foundation from his blog. It was an amazing blog to me because he showed what it is like to have a mitochondrial disease with metaphors.
Here is what he said:
"Okay so here it is; mitochondrial disease occurs when the body cannot produce enough energy to sustain life. Of course this is sort of like saying the earthquake that caused the domino disasters in Japan is the result of an acorn that fell off an oak tree in San Diego.
Mitochondrial Disease is like:
Replacing your car battery with two Double “A” Energizers and wondering why it won’t start. But your car still looks pretty good, that is until it begins to rust from inactivity.
Trying to supply the electrical requirements of Los Angeles (pop. 3.7 million) with the one electrical plant in Ranchester Wyoming (pop. 701).
Swimming against Olympian, 8 Gold Medal winner, Michael Phelps, and you’re pool is filled with molasses." --Charles A. Mohan, Jr. is CEO and Executive Director of the United Mitochondrial Disease Foundation (Retrieved from http://umdfblog.com/home/?p=338)
He said a lot more, but those were my favorites!
Mitochondrial disease is much newer to the medical table than other diseases. Mitochondria have their own set of DNA, which can contain so many different kinds of defects. As a result of these defects, various functions of the mitochondria can be affected. On top of that the mitochondria have a whole series of steps in converting, storing and using energy. Any number of things can go wrong, and without an obvious source in the areas that are currently understood by scientists, many mitochondrial diseases are elusive.
Because mitochondria are the "powerhouses" for every cell in the body, a defect can affect most body systems. Depending on where the defect is will determine if the damage stays within a certain body system or becomes multiple body systems.
Here's a quote from the UMDF website describing mitochondrial disease:
"Depending on which cells are affected, symptoms may include loss of motor control, muscle weakness and pain, gastro-intestinal disorders and swallowing difficulties, poor growth, cardiac disease, liver disease, diabetes, respiratory complications, seizures, visual/hearing problems, lactic acidosis, developmental delays and susceptibility to infection."
Originally mito diseases were thought to be childhood diseases, but adults are being found more and more with mito disease. The thought is that they had the defects since birth, but that it takes a long time for enough mitochondrial damage to occur that it shows symptoms, or even that it was just elusive as a child and missed.
While there is a wide range of testing for mitochondrial disease, only the most obvious kinds will show up on basic testing. This testing includes muscle biopsies, labs for lactate levels, organic acid levels, liver enzymes, muscle enzymes looking for muscle damage, and even organic acids of the spinal fluid. Despite the best of scientific knowledge about mitochondrial disease, even these tests are not 100% accurate in diagnosing it. There are obvious types that will be diagnosed using these methods, but a negative result of these does not exclude mito disease.
The UMDF says "Think mitochondrial disease when 3 or more organs are involved."
Mitochondrial disease can be a result of inheritance or rarely by a spontaneous mutation.
These pictures show the inheritance pattern of mito disease:
The first is if the father and mother are both carriers. Then 25% of children are at risk of having the disease and 50% risk of carriers. The second shows if the mother has the mutation in her cellular DNA, the chances are that 50% of her children will for sure have the disease. The third is if the mother has a mutation of the mitochondrial DNA. Then 25% will have full effectiveness, then the effectiveness gets milder and one child may not show signs at all.
This last one seems to be how our children are showing signs.
Kimber is affected. Nikki shows less signs than Kimber, but has some, Joshua even less than Nikki now, although he had a lot of signs when he was an infant, and Amy seems to not have any signs at all. Interesting to say the least.
Treatment:
There is obviously no cure. A person with a mito disease will have it for their lifetime, and depending on the area and type of defect will determine their lifespan, quality of life and severity of symptoms as they get older. Certain types, like MELAS, reduce the lifespan due to complications from the disease.
Physical therapy, occupational therapy, speech therapy, and assistive equipment are just a few of things that mito patients have to help. The other treatment, which is not proven to be effective, but has been shown to be very helpful, is supplements. The "Mitochondrial Cocktail" is a group of supplements often suggested by physicians. They include L-Carnitine, Coenzyme Q10, Creatine, Vitamins C, B, E, alpha lipoic acid and L-arginine. Many of these supplements are thought to be helpful in allowing the cells to use energy more efficiently.
Kimber and I take part of the cocktail currently. She is on L-Carnitine and COQ10, and I take those and Creatine. They have helped us significantly. I was in a bit of denial and have been for a while since the type we have has not been figured out. How can we have a disease and not know what type it is? It not really show up on diagnostics.... A few months back I ran out of the cocktail. Pretty much I let Kimber have the rest of our supply because it helped her so much with her school performance. And in the last month I have deteriorated to where I was before I started taking them. Proof to my doctor that it is a mitochondrial disease, even though it is choosing to be elusive. I am still a bit skeptical, but when the cocktail comes in and I begin again, I guess we will see if there is a marked improvement like last time. I guess then I will know for sure.
I've decided I am going to start posting on different types of mito diseases. It is such an elusive disease, it's often called the great masquerader. Everyone needs to know what it is and how we are affected by it.
One of my FB acquaintances quoted the head of the United Mitochondrial Disease Foundation from his blog. It was an amazing blog to me because he showed what it is like to have a mitochondrial disease with metaphors.
Here is what he said:
"Okay so here it is; mitochondrial disease occurs when the body cannot produce enough energy to sustain life. Of course this is sort of like saying the earthquake that caused the domino disasters in Japan is the result of an acorn that fell off an oak tree in San Diego.
Mitochondrial Disease is like:
Replacing your car battery with two Double “A” Energizers and wondering why it won’t start. But your car still looks pretty good, that is until it begins to rust from inactivity.
Trying to supply the electrical requirements of Los Angeles (pop. 3.7 million) with the one electrical plant in Ranchester Wyoming (pop. 701).
Swimming against Olympian, 8 Gold Medal winner, Michael Phelps, and you’re pool is filled with molasses." --Charles A. Mohan, Jr. is CEO and Executive Director of the United Mitochondrial Disease Foundation (Retrieved from http://umdfblog.com/home/?p=338)
He said a lot more, but those were my favorites!
Mitochondrial disease is much newer to the medical table than other diseases. Mitochondria have their own set of DNA, which can contain so many different kinds of defects. As a result of these defects, various functions of the mitochondria can be affected. On top of that the mitochondria have a whole series of steps in converting, storing and using energy. Any number of things can go wrong, and without an obvious source in the areas that are currently understood by scientists, many mitochondrial diseases are elusive.
Because mitochondria are the "powerhouses" for every cell in the body, a defect can affect most body systems. Depending on where the defect is will determine if the damage stays within a certain body system or becomes multiple body systems.
Here's a quote from the UMDF website describing mitochondrial disease: "Depending on which cells are affected, symptoms may include loss of motor control, muscle weakness and pain, gastro-intestinal disorders and swallowing difficulties, poor growth, cardiac disease, liver disease, diabetes, respiratory complications, seizures, visual/hearing problems, lactic acidosis, developmental delays and susceptibility to infection."
Originally mito diseases were thought to be childhood diseases, but adults are being found more and more with mito disease. The thought is that they had the defects since birth, but that it takes a long time for enough mitochondrial damage to occur that it shows symptoms, or even that it was just elusive as a child and missed.
While there is a wide range of testing for mitochondrial disease, only the most obvious kinds will show up on basic testing. This testing includes muscle biopsies, labs for lactate levels, organic acid levels, liver enzymes, muscle enzymes looking for muscle damage, and even organic acids of the spinal fluid. Despite the best of scientific knowledge about mitochondrial disease, even these tests are not 100% accurate in diagnosing it. There are obvious types that will be diagnosed using these methods, but a negative result of these does not exclude mito disease.
The UMDF says "Think mitochondrial disease when 3 or more organs are involved."
Mitochondrial disease can be a result of inheritance or rarely by a spontaneous mutation.
These pictures show the inheritance pattern of mito disease:
The first is if the father and mother are both carriers. Then 25% of children are at risk of having the disease and 50% risk of carriers. The second shows if the mother has the mutation in her cellular DNA, the chances are that 50% of her children will for sure have the disease. The third is if the mother has a mutation of the mitochondrial DNA. Then 25% will have full effectiveness, then the effectiveness gets milder and one child may not show signs at all.
This last one seems to be how our children are showing signs.
Kimber is affected. Nikki shows less signs than Kimber, but has some, Joshua even less than Nikki now, although he had a lot of signs when he was an infant, and Amy seems to not have any signs at all. Interesting to say the least.
Treatment:
There is obviously no cure. A person with a mito disease will have it for their lifetime, and depending on the area and type of defect will determine their lifespan, quality of life and severity of symptoms as they get older. Certain types, like MELAS, reduce the lifespan due to complications from the disease.
Physical therapy, occupational therapy, speech therapy, and assistive equipment are just a few of things that mito patients have to help. The other treatment, which is not proven to be effective, but has been shown to be very helpful, is supplements. The "Mitochondrial Cocktail" is a group of supplements often suggested by physicians. They include L-Carnitine, Coenzyme Q10, Creatine, Vitamins C, B, E, alpha lipoic acid and L-arginine. Many of these supplements are thought to be helpful in allowing the cells to use energy more efficiently.
Kimber and I take part of the cocktail currently. She is on L-Carnitine and COQ10, and I take those and Creatine. They have helped us significantly. I was in a bit of denial and have been for a while since the type we have has not been figured out. How can we have a disease and not know what type it is? It not really show up on diagnostics.... A few months back I ran out of the cocktail. Pretty much I let Kimber have the rest of our supply because it helped her so much with her school performance. And in the last month I have deteriorated to where I was before I started taking them. Proof to my doctor that it is a mitochondrial disease, even though it is choosing to be elusive. I am still a bit skeptical, but when the cocktail comes in and I begin again, I guess we will see if there is a marked improvement like last time. I guess then I will know for sure.
I've decided I am going to start posting on different types of mito diseases. It is such an elusive disease, it's often called the great masquerader. Everyone needs to know what it is and how we are affected by it.
Thursday, March 24, 2011
Another appointment
Well, if I had anything spectacular to say the title wouldn't say another appointment, it would say Yay for whatever...
The great news is that Kimber's EKG and Respiratory eval were normal. The doctor did everything I expected her to. Kimber had a great neurological eval with no major deficits. She has some mild hypotonia in her arms/hands that the doc picked up on, and while the doctor did not see her at her worst, at least this was acknowledged. I want to videotape her walking when she is feeling terrible to show them, since it is never at an appointment.
She is going to do some labs, but told me flat out that she didn't expect them to come back abnormal. I guess I should be thankful for brute honesty instead of masked false sense of hope. My neuro never did blood levels of things like lactate and pyruvate. She id urine organic acids, but not serum. If something comes back abnormal on Kimber, that might give them an idea of where to go for me with those types of labs, but I know the elusive nature of these things, and when you are feeling good, of course your labs are most likely going to come back normal....
So I am thankful that I took a step back and took hold of those emotions before allowing this appointment to completely bring me down. I will be grateful for whatever God gives me and move on with what I have until something new happens or is found.
=)
Later tonight.... =(
So it has taken me 4 weeks (app) to get to where I was when it took me almost a year the first time.... I feel confused. I don't understand what is going on, and I hate not understanding. Time to get supplements on board again, no wait, the time for that has already passed. Just going to have to deal with this until they get back on board and hopefully start working again.
The great news is that Kimber's EKG and Respiratory eval were normal. The doctor did everything I expected her to. Kimber had a great neurological eval with no major deficits. She has some mild hypotonia in her arms/hands that the doc picked up on, and while the doctor did not see her at her worst, at least this was acknowledged. I want to videotape her walking when she is feeling terrible to show them, since it is never at an appointment.
She is going to do some labs, but told me flat out that she didn't expect them to come back abnormal. I guess I should be thankful for brute honesty instead of masked false sense of hope. My neuro never did blood levels of things like lactate and pyruvate. She id urine organic acids, but not serum. If something comes back abnormal on Kimber, that might give them an idea of where to go for me with those types of labs, but I know the elusive nature of these things, and when you are feeling good, of course your labs are most likely going to come back normal....
So I am thankful that I took a step back and took hold of those emotions before allowing this appointment to completely bring me down. I will be grateful for whatever God gives me and move on with what I have until something new happens or is found.
=)
Later tonight.... =(
So it has taken me 4 weeks (app) to get to where I was when it took me almost a year the first time.... I feel confused. I don't understand what is going on, and I hate not understanding. Time to get supplements on board again, no wait, the time for that has already passed. Just going to have to deal with this until they get back on board and hopefully start working again.
Wednesday, March 23, 2011
Post a day?
I'm in a new contest to see if who can post everyday. The requirements state that it has to be something that makes absolutely no sense and not really matter to anyone else except you! Hahaha
Just Kidding.
No, but seriously, I just feel this intense need to lay it all out there on the table. Let it all go. God, I trust You to take care of me, to love me and make sure that I have what I need. You know better than I do what I need. Especially regarding my body.
I feel like it is betraying me right now. I feel like I am on a down hill slope, and you can best bet it isn't the bunny slope... I guess in my own mind I thought I had come to grips with how I was doing. I had "figured it out" as far as how to control the symptoms. Boy was I wrong. I am not in control God, You are. You will bring me through this just as every other time, regardless of my state of panic, so what good will it do me to panic?
I will do the laundry today, cook dinner, maybe finish some school work, and then I will go to sleep. Tomorrow I will take Kimber to her appointment and pray that You guide that appointment. That it meet your standards, Your expectations and that You will guide her in the right direction, be that something beneficial or not.
No stress will take away my muscle weakness, so no point in adding anything extra to my mix. =)
Later this day... Yup, that's right... It's the same day...
I emailed my doctor just now to let her know of the changes... I figured I had better not show up on her office doorstep with a myriad of symptoms that are progressively getting worse...again... without some warning. Not that she can do much since I don't have insurance right now... No way we can pay hundreds or thousands of dollars for more testing that will turn out the same as last time... Shoot, we can't even pay tens of dollars right now. So, I guess it was useless to tell her, except that I just felt compelled. Haha. I'm sure she appreciates my extra long compulsion.... =)
Even Later this day... Hahahaha
So my doctor emailed me back tonight and decided to give me what might have sounded like a good lashing if I could actually hear her... I guess me telling her honestly that I had stopped the supplements because we ran out of them and money made her even more sure that this is a mitochondrial storage disease and that my "deterioration" is a for sure result of not taking the supplements. Hmmm. Curious thought just hit me. I wonder how mad she would be to know that, although that was not a lie, I stopped taking them months ago versus weeks ago because we ran out of money months ago..... I wonder if that makes a big difference.... Oh well, will have to curiously be wondering because I do not want another lashing email!! =) At least I have a doctor that responds to me via email. for that I am thankful.
Just Kidding.
No, but seriously, I just feel this intense need to lay it all out there on the table. Let it all go. God, I trust You to take care of me, to love me and make sure that I have what I need. You know better than I do what I need. Especially regarding my body.
I feel like it is betraying me right now. I feel like I am on a down hill slope, and you can best bet it isn't the bunny slope... I guess in my own mind I thought I had come to grips with how I was doing. I had "figured it out" as far as how to control the symptoms. Boy was I wrong. I am not in control God, You are. You will bring me through this just as every other time, regardless of my state of panic, so what good will it do me to panic?
I will do the laundry today, cook dinner, maybe finish some school work, and then I will go to sleep. Tomorrow I will take Kimber to her appointment and pray that You guide that appointment. That it meet your standards, Your expectations and that You will guide her in the right direction, be that something beneficial or not.
No stress will take away my muscle weakness, so no point in adding anything extra to my mix. =)
Later this day... Yup, that's right... It's the same day...
I emailed my doctor just now to let her know of the changes... I figured I had better not show up on her office doorstep with a myriad of symptoms that are progressively getting worse...again... without some warning. Not that she can do much since I don't have insurance right now... No way we can pay hundreds or thousands of dollars for more testing that will turn out the same as last time... Shoot, we can't even pay tens of dollars right now. So, I guess it was useless to tell her, except that I just felt compelled. Haha. I'm sure she appreciates my extra long compulsion.... =)
Even Later this day... Hahahaha
So my doctor emailed me back tonight and decided to give me what might have sounded like a good lashing if I could actually hear her... I guess me telling her honestly that I had stopped the supplements because we ran out of them and money made her even more sure that this is a mitochondrial storage disease and that my "deterioration" is a for sure result of not taking the supplements. Hmmm. Curious thought just hit me. I wonder how mad she would be to know that, although that was not a lie, I stopped taking them months ago versus weeks ago because we ran out of money months ago..... I wonder if that makes a big difference.... Oh well, will have to curiously be wondering because I do not want another lashing email!! =) At least I have a doctor that responds to me via email. for that I am thankful.
Tuesday, March 22, 2011
Nerves
Ha, I guess that title could take on several meanings.
Today it just happens to be "butterflies in my stomach" nerves.
Kimber's appointment is on Thursday. For several days I was researching, thinking of anything the neuromuscular doctor might ask me, anything that might give her a lightbulb moment.
Of course I had to take a step back to see the reality of the situation. I am not her patient. I have to remember that.
I AM NOT HER PATIENT. While she will be asking me questions about my symptoms to clue her in on Kimber's, she is not treating me.
I guess I have just been so blessed with Dr. Scheuerle in that she has always taken me into top consideration. She led me to the doctors I have today. She knew how to help me in small ways that really made a big difference in the long run. But the reality is, not all doctors are that way. I knew this reality. I have worked with doctors who are the exact opposite of Dr. Scheuerle, and I have seen these kinds of doctors personally. They only care about quick answers and getting to the next appointment time. With them, anything out from under their radar of diagnoses, is just the patient exaggerating or playing up stuff that isn't there. It was opinions like that which really kept me from seeking help for a long time. The first doctor I saw played everything off on my weight. Of course, I don't know how being over weight can make you have seizures, but I to him I was just a number on his list of "what now..."
So rather than putting all of my hope in this new doctor I have come to realize that she is not treating me. And if something comes of this appointment that gives her an idea for Kimber that helps me, then wonderful. But, this is for Kimber.
I will put my hope in God that He shows her something for Kimber and maybe I will reap some benefits from it, but I am not her patient and I will not expect her to try and put a real name on the "suspecteds" on my medical records.
So the butterflies in the pit of my stomach about this appointment are really useless. Nothing will become of this appointment that will diagnose me and I will face that.
It hurts, but it is reality.
Today it just happens to be "butterflies in my stomach" nerves.
Kimber's appointment is on Thursday. For several days I was researching, thinking of anything the neuromuscular doctor might ask me, anything that might give her a lightbulb moment.
Of course I had to take a step back to see the reality of the situation. I am not her patient. I have to remember that.
I AM NOT HER PATIENT. While she will be asking me questions about my symptoms to clue her in on Kimber's, she is not treating me.
I guess I have just been so blessed with Dr. Scheuerle in that she has always taken me into top consideration. She led me to the doctors I have today. She knew how to help me in small ways that really made a big difference in the long run. But the reality is, not all doctors are that way. I knew this reality. I have worked with doctors who are the exact opposite of Dr. Scheuerle, and I have seen these kinds of doctors personally. They only care about quick answers and getting to the next appointment time. With them, anything out from under their radar of diagnoses, is just the patient exaggerating or playing up stuff that isn't there. It was opinions like that which really kept me from seeking help for a long time. The first doctor I saw played everything off on my weight. Of course, I don't know how being over weight can make you have seizures, but I to him I was just a number on his list of "what now..."
So rather than putting all of my hope in this new doctor I have come to realize that she is not treating me. And if something comes of this appointment that gives her an idea for Kimber that helps me, then wonderful. But, this is for Kimber.
I will put my hope in God that He shows her something for Kimber and maybe I will reap some benefits from it, but I am not her patient and I will not expect her to try and put a real name on the "suspecteds" on my medical records.
So the butterflies in the pit of my stomach about this appointment are really useless. Nothing will become of this appointment that will diagnose me and I will face that.
It hurts, but it is reality.
Saturday, March 19, 2011
Descriptive relief
How do I describe it?
My legs are heavy like wet sandbags after a hurricane.
Walking is like pulling my leg out of knee deep mud in Core Sound.
Thinking is like driving through the thickest misty fog.
Breathing requires thought and planning, forgetting is devastating.
Muscles twitch and nerves fire like the bursting finale of the Atlantic Beach 4th of July Fireworks.
The backs of my arms burn like Carrot Island during the fireworks show every year, expectant and spreading uncontrollable despite best efforts.
The ringing in my left ear keeps fading in and out like my grandmothers old rotary phone, so loud that it drowns everything else out.
Muscles are clamping down like the scallop that was just plucked from it's comfort zone.
Staring off into faded non-distinguishable dimensions, powerless to look away but painfully aware of everything.
Nausea rushing in like the tide, choppy waves just before a storm.
Weariness like the weathered soul that withstood one to many nor'easterns at sea.
Fatigue like the tree that topples from the pressure of the 150 mi/hr winds.
Being pelted daily with this onslaught of symptoms like the torrential downpours just before the eye of the storm.
Ugh. I used to be so good at creative descriptive writing. My brain is like mush.
My legs are heavy like wet sandbags after a hurricane.
Walking is like pulling my leg out of knee deep mud in Core Sound.
Thinking is like driving through the thickest misty fog.
Breathing requires thought and planning, forgetting is devastating.
Muscles twitch and nerves fire like the bursting finale of the Atlantic Beach 4th of July Fireworks.
The backs of my arms burn like Carrot Island during the fireworks show every year, expectant and spreading uncontrollable despite best efforts.
The ringing in my left ear keeps fading in and out like my grandmothers old rotary phone, so loud that it drowns everything else out.
Muscles are clamping down like the scallop that was just plucked from it's comfort zone.
Staring off into faded non-distinguishable dimensions, powerless to look away but painfully aware of everything.
Nausea rushing in like the tide, choppy waves just before a storm.
Weariness like the weathered soul that withstood one to many nor'easterns at sea.
Fatigue like the tree that topples from the pressure of the 150 mi/hr winds.
Being pelted daily with this onslaught of symptoms like the torrential downpours just before the eye of the storm.
Ugh. I used to be so good at creative descriptive writing. My brain is like mush.
Friday, March 18, 2011
Roller-coaster with no end...
I know my blog lately has been all about my feelings and nothing like how I wanted it to be, but sometimes I feel as if this is my only outlet aside from talking to God. And sometimes I feel like I can do my best talking to God right here because I can't even think right to tell Him what I am going through. Then I feel ashamed. God knows what I am going through, why do I tell Him? Shouldn't I be stronger and awaiting His relief patiently? But I am not strong right now. As much as I want some one to understand that, I have come to realize that there are not many people who love me that do understand that, and if they do understand it, it is because they themselves are walking in the same muddy path alongside me and they have the same amount to give as I do. How dare I ask them to listen? And what good will listening to me do when they are powerless to help me?
I feel so weary. Tired. Not sleepy tired. But just fatigued, worn out, in need of rest that just never comes. Rest? Like time away from kids and household and school? No. Even time away from all of that will not take away the constant plague of symptoms that I have. Then I feel guilty. There are others so much worse off than I am. I have been blessed in that I can walk. I can eat, I can breathe, I can do so much. How dare I feel this way? Is it wrong to be weary? Is it wrong to plead for answers?
I feel as though I am constantly having to defend myself, against people and hurtful things they say, against myself and my own self loathing, and against these stupid symptoms that make me feel every day like I may just be crazy.
I hate roller coasters that just go up and down and up and down with no end in sight. If I am going on a ride, it better have twists and turns and end with me still intact. I do not feel like I am still intact. I am taking a beating and I have hit the floor. The ref is counting to 10. I know I will get back up again, but when? And when I do, will I still be able to fight?
Where do I go from here? I can keep walking everyday, pretending that I am ok, never really having someone to understand. I have been there many times. I know how it is, how lonely it is, how much hurt gets bottled up until I accidentally blow and someone I love gets hurt for no good reason. Except the reason that I have nothing left to give. I am so very weary and everyone around me is suffering for it. I would rather suffer in silence than hurt someone I love. God please tell me there is an end in sight? or at least show me how to get back to being me with modifications.
Today was a terrible day and I will bottle it all up and package it and set it aside just like all the rest.
I feel so weary. Tired. Not sleepy tired. But just fatigued, worn out, in need of rest that just never comes. Rest? Like time away from kids and household and school? No. Even time away from all of that will not take away the constant plague of symptoms that I have. Then I feel guilty. There are others so much worse off than I am. I have been blessed in that I can walk. I can eat, I can breathe, I can do so much. How dare I feel this way? Is it wrong to be weary? Is it wrong to plead for answers?
I feel as though I am constantly having to defend myself, against people and hurtful things they say, against myself and my own self loathing, and against these stupid symptoms that make me feel every day like I may just be crazy.
I hate roller coasters that just go up and down and up and down with no end in sight. If I am going on a ride, it better have twists and turns and end with me still intact. I do not feel like I am still intact. I am taking a beating and I have hit the floor. The ref is counting to 10. I know I will get back up again, but when? And when I do, will I still be able to fight?
Where do I go from here? I can keep walking everyday, pretending that I am ok, never really having someone to understand. I have been there many times. I know how it is, how lonely it is, how much hurt gets bottled up until I accidentally blow and someone I love gets hurt for no good reason. Except the reason that I have nothing left to give. I am so very weary and everyone around me is suffering for it. I would rather suffer in silence than hurt someone I love. God please tell me there is an end in sight? or at least show me how to get back to being me with modifications.
Today was a terrible day and I will bottle it all up and package it and set it aside just like all the rest.
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