I just watched the movie, "The Road." It pretty much is a movie reflecting how I feel. Everything is a funky brown color and people are scrounging for survival. I feel that way too. I am not seeing anything in color.
This is coming from a place deep within. I am writing like no one will read this, so it doesn't matter what I say. I don't know if I can survive this illness. I dream of death. If I had a gun, I would use it. Am I depressed? You bet. Life is about surviving for me. There is no pleasure. There is pain. Fibro pain and no one to share my life with or wipe my brow during such bad times. Fatigue like I can't explain. Only those who are on this forum know what I mean. This is not a life for living. "The Road" is how I feel. I am on a road to nowhere. Like I am scrounging looking for food (or a better day) knowing that this life is full of nothing, but suffering for me.
The peptide shot I have been taking for food has worked, but I threw another one into the mix for hormones. I am in perimenopause and they thought they could treat it with this shot that would cause me to make hormones. It has caused me to make hormones, I guess. Only, I am full of rage and anger. I have a sex drive, but one with dark thoughts. I am not me. They will not do it again, the shot. After I had the shot, I developed a rash and had to go to the ER. I have been told by my doctor that I am the only one who has reacted this way. That everyone has had positive results. Great....thanks.
The food shot helped my energy for months and then...kaboom. Gone. No more energy. But, I have gained weight. I am thinking about starving myself now. OR, going off the shot to have food allergies again and lack of absorption. That way I can be the stick figure that I am used to being. I got what I wanted. I can eat food, but now I am fat. People say, "exercise!" Right...and become sicker. I can barely walk down the street.
My thoughts are so dark. Death is on my mind always and if it's not my death I am thinking about, it's my mother's or when my sister died or losses. It's how I feel so disconnected from those around me and how when people call, I don't know what to say. I cannot act "well." I keep the phone on "off." And, I stare at the clock.
I cannot talk of what I have been up to and I don't feel like talking about men, funny movies or anything that people talk about. I want to talk about how unwell I feel. How much weight I have put on. How I can't sleep at night and I feel like I am dying. How I am on the Fentanyl patch for pain due to my Fibromyalgia being out of control. How I want to lose weight, but can't exercise. How hard it is for someone who was once 107 and now weighs 133, how I don't know what to do. And how I have adrenal fatigue, but I can't take anything, and I do mean anything to make it better. Glandulars make it worse. Cortef and Isocort makes it worse. The adrenals react to everything. I used to be able to take Cortef. No longer.
How I feel like a freak and I have NO hope. It has been sucked out of me. I don't want to hear about XMRV until there is actually a treatment. How all of these new findings mean nothing, unless they can fix them. Who cares if I test positive for something?? Now what. My friend was so excited that she tested positive for Lyme. It means she doesn't have CFS and there is hope. That is what she told me. She wanted me to have Lyme too. Guess what? That was 2 years ago and she is sicker than a dog and unable to function. Antibiotics, all kinds of BS have not made her better. A diagnosis, but now what? Now, she is supposed to eat no protein and just carbs and that should make the antibiotic work. Are we just guinea pigs? Yes. And by no means do I mean that those with lyme don't get better, but she isn't and she was so happy with the diagnosis and felt happy that she didn't have CFS. She is worse than me after 2 years and treatment. Now, she is miserable.
Am I sounding too depressing? YES. I know I am. But I have been sick for more than half of my life. I can't relate to other people. I can't even relate to other CFIDS folks. Do you have perimenopause and adrenal exhaustion? Do you have IC? Do you get a bladder infection every time you have sex? EVERY TIME?
Are you gaining weight, but not eating enough to merit the weight? And, what do you do to take it off? I am sure some can relate to this.
I would say I am sorry. But, I am not sorry. I am miserable and I can't help it. When the end of "The Road" came to an end, the little boy was so sad that his father had died. He cried. He felt like, who will take care of me? This couple came and rescued him and they were so happy to take him and have him.
I thought to myself...why don't people feel that way about adults? Why are we trained to feel that it's ok to help a child, but an adult is an adult and you are on your own? Maybe I am way out of touch here. Maybe I am. I am not wanting someone to come scoop me up and take care of me. But, can I tell you how much I miss having someone, a family member or friend, tell me they love me. Tell me to come on over and they will get me some soup. God. What is that like? OR, they will come to me. My mom is 81 and can't. I know she loves me. My brother could care less about my illness and my friends will go to a movie with me or dinner, but God forbid they come visit. Not only do doctor's not make house calls, but friends don't either. And yet at the same time, I don't want them over unless I can be me. Miserable, due to an illness and in pajamas.
And, at the same time, I can't deal with anymore sick folks who reach out to me only to email me at length, how miserable they are, how they have been sexually abused growing up, how they have been left for dead. How they have no money. I know. It's kind of weird, huh? That you would think misery loves company. Yes and no. On a normal scale. But when someone starts emailing you on a normal basis about how much their life sucks, it really doesn't uplift my day and make me feel better. It makes me reflect on where I don't want to be and makes me so sad. It makes me even more depressed. It makes me feel, how did I get here? This is not what I had planned. Even though I am so down, I don't feel like writing people on a daily basis, a book, on how much my life sucks. I will do it on here to unleash "the freak." I am unleashing my negativity and feelings on here. But, I don't want to do it every day. Just every now and then. I need to for my soul.
Take me to the other side. Yes, whatever that means to you...take me away from here. Either up to the heavens, or out of this illness that at this present moment, is drowning me.
This is coming from a place deep within. I am writing like no one will read this, so it doesn't matter what I say. I don't know if I can survive this illness. I dream of death. If I had a gun, I would use it. Am I depressed? You bet. Life is about surviving for me. There is no pleasure. There is pain. Fibro pain and no one to share my life with or wipe my brow during such bad times. Fatigue like I can't explain. Only those who are on this forum know what I mean. This is not a life for living. "The Road" is how I feel. I am on a road to nowhere. Like I am scrounging looking for food (or a better day) knowing that this life is full of nothing, but suffering for me.
The peptide shot I have been taking for food has worked, but I threw another one into the mix for hormones. I am in perimenopause and they thought they could treat it with this shot that would cause me to make hormones. It has caused me to make hormones, I guess. Only, I am full of rage and anger. I have a sex drive, but one with dark thoughts. I am not me. They will not do it again, the shot. After I had the shot, I developed a rash and had to go to the ER. I have been told by my doctor that I am the only one who has reacted this way. That everyone has had positive results. Great....thanks.
The food shot helped my energy for months and then...kaboom. Gone. No more energy. But, I have gained weight. I am thinking about starving myself now. OR, going off the shot to have food allergies again and lack of absorption. That way I can be the stick figure that I am used to being. I got what I wanted. I can eat food, but now I am fat. People say, "exercise!" Right...and become sicker. I can barely walk down the street.
My thoughts are so dark. Death is on my mind always and if it's not my death I am thinking about, it's my mother's or when my sister died or losses. It's how I feel so disconnected from those around me and how when people call, I don't know what to say. I cannot act "well." I keep the phone on "off." And, I stare at the clock.
I cannot talk of what I have been up to and I don't feel like talking about men, funny movies or anything that people talk about. I want to talk about how unwell I feel. How much weight I have put on. How I can't sleep at night and I feel like I am dying. How I am on the Fentanyl patch for pain due to my Fibromyalgia being out of control. How I want to lose weight, but can't exercise. How hard it is for someone who was once 107 and now weighs 133, how I don't know what to do. And how I have adrenal fatigue, but I can't take anything, and I do mean anything to make it better. Glandulars make it worse. Cortef and Isocort makes it worse. The adrenals react to everything. I used to be able to take Cortef. No longer.
How I feel like a freak and I have NO hope. It has been sucked out of me. I don't want to hear about XMRV until there is actually a treatment. How all of these new findings mean nothing, unless they can fix them. Who cares if I test positive for something?? Now what. My friend was so excited that she tested positive for Lyme. It means she doesn't have CFS and there is hope. That is what she told me. She wanted me to have Lyme too. Guess what? That was 2 years ago and she is sicker than a dog and unable to function. Antibiotics, all kinds of BS have not made her better. A diagnosis, but now what? Now, she is supposed to eat no protein and just carbs and that should make the antibiotic work. Are we just guinea pigs? Yes. And by no means do I mean that those with lyme don't get better, but she isn't and she was so happy with the diagnosis and felt happy that she didn't have CFS. She is worse than me after 2 years and treatment. Now, she is miserable.
Am I sounding too depressing? YES. I know I am. But I have been sick for more than half of my life. I can't relate to other people. I can't even relate to other CFIDS folks. Do you have perimenopause and adrenal exhaustion? Do you have IC? Do you get a bladder infection every time you have sex? EVERY TIME?
Are you gaining weight, but not eating enough to merit the weight? And, what do you do to take it off? I am sure some can relate to this.
I would say I am sorry. But, I am not sorry. I am miserable and I can't help it. When the end of "The Road" came to an end, the little boy was so sad that his father had died. He cried. He felt like, who will take care of me? This couple came and rescued him and they were so happy to take him and have him.
I thought to myself...why don't people feel that way about adults? Why are we trained to feel that it's ok to help a child, but an adult is an adult and you are on your own? Maybe I am way out of touch here. Maybe I am. I am not wanting someone to come scoop me up and take care of me. But, can I tell you how much I miss having someone, a family member or friend, tell me they love me. Tell me to come on over and they will get me some soup. God. What is that like? OR, they will come to me. My mom is 81 and can't. I know she loves me. My brother could care less about my illness and my friends will go to a movie with me or dinner, but God forbid they come visit. Not only do doctor's not make house calls, but friends don't either. And yet at the same time, I don't want them over unless I can be me. Miserable, due to an illness and in pajamas.
And, at the same time, I can't deal with anymore sick folks who reach out to me only to email me at length, how miserable they are, how they have been sexually abused growing up, how they have been left for dead. How they have no money. I know. It's kind of weird, huh? That you would think misery loves company. Yes and no. On a normal scale. But when someone starts emailing you on a normal basis about how much their life sucks, it really doesn't uplift my day and make me feel better. It makes me reflect on where I don't want to be and makes me so sad. It makes me even more depressed. It makes me feel, how did I get here? This is not what I had planned. Even though I am so down, I don't feel like writing people on a daily basis, a book, on how much my life sucks. I will do it on here to unleash "the freak." I am unleashing my negativity and feelings on here. But, I don't want to do it every day. Just every now and then. I need to for my soul.
Take me to the other side. Yes, whatever that means to you...take me away from here. Either up to the heavens, or out of this illness that at this present moment, is drowning me.