There are so many people here that linger in the shadows. They read, they say nothing. I wonder about these people. Not wonder as in, "What's wrong with these people? but what is their life like?" Then I think to myself, perhaps they are too ill to write anything or maybe they don't want to write something because they don't want to sound like a downer. Or maybe they are too ill to even process anything. We all have a story.
My favorite posts and I am going to say names here are Victoria's ever shining posts of hope and she walks us through the day to day; mattresses, grocery shopping, retirement. Funny, happy, inspiring is what comes to mind. Kelvin, gosh Kelvin you crack me up. I love your pictures and you have that dry sense of humor. That British dryness. I love it. Laurel. Laurel, for as ill as you are, you have this spirit that I can see in your pictures and feel with your words. In bed mostly, not much energy but full of hope and life. Thank you. It's truly inspiring to all of us and hopefully to those that are most ill. The woman who lives in a tent, I believe?? Love it. I can smell the flowers and feel the coolness of the fresh air. I feel a sense of invigoration after reading your blogs. I feel life and purpose! That means so much.
To be or not to be..."a victim." We are all ill. We all have pain, we all for the most part have financial woes, but it's the human spirit that lives on. If your spirit is sinking, you are in trouble and it's easy to be like that when one is so ill. Try not to stay there. Hard to do, but harder to overcome this illness if you wallow in your misery.
Years ago, I was in my 20's and ill. I was always the CFS gal though, that half lived meaning; I could still work, go out here and there, etc. I worked in radio in Philadelphia, which was the 4th largest radio market in the country. I worked part time. Always a music buff, I loved it. I was a spitfire. I have been called the sledgehammer. Kind of funny. Why? Because I am blunt. Anyone who really knows me knows I have a filter, but I can lay it on the line without a thought. As the years have passed, that intensity has died down. It makes me sad because I know it's the illness. I used to be able to really debate too. Not anymore. Too much work. I listen more now, which actually has proven to be wise. Talking is overrated. Sometimes it's good to listen instead of talk. I need silence in the mornings, and music isn't heard throughout my house like it once was. But, I can still tell you every single Led Zeppelin album in order and what dates each album came out or who wrote "Claire de Lune" and how long the song is....how long it truly is.
I was driving today and thinking, "God, I miss dancing." I am such a good dancer. I love to dance. I took bellydance lessons for a year and when I was younger I won all kinds of awards for dancing. I rarely dance anymore. I just can't. But guess what? It's still there. Just not as much. But there is a beauty to that because when it is there, I unleash it and "there I AM." ME. I am still here, underneath the layers of illness. I may not shine as bright as I used to, but anyone who gets to have a peak at all of the facets that make up this diamond, is lucky! And in some respects, maybe I shine brighter because I am ill, have suffered some severe losses, I can still laugh and my eyes still sparkle. My ex boyfriend, who mostly saw me in pajamas, always called me a rockstar. When I asked why, he answered, "Because in spite of your illness, you are still feisty and beautiful and you shine brighter than those who are well." I loved that.
I know what it's like to be horribly ill. Not only to be horribly ill but to have no one. To be alone. Years ago, I had to fly 5 hours to San Francisco for major surgery. I had endometriosis. I saw Dr. Debra Metzger, one of the best. It was $10,000 out of pocket. $10,000 I didn't have. I was desperate. I was worried sick. What if it doesn't work? I went by myself and lived with a family who took me in. The woman who took me in had endometriosis. Why did this happen? Not one person in my family wanted to take off from work and come with me. NO ONE. I had the surgery and developed a massive blood clot. I had to be choppered from the East Bay to San Fran. I almost died. I was in the hospital for 7 days for this massive blood clot. My doctor was shocked that not one family member came out to see me. It was embarrassing. I am not revealing this for someone to feel sorry for me. I had a friend who was diagnosed with lyme disease recently. She isn't as ill as I am and yet every doctor's appointment, she will not go alone. She is too scared. I think having support is wonderful and if you are so ill that you need someone to assist you or help you, it makes sense to have help. I never have help, it bothers me when really ill, but sometimes, it is what it is and I have developed thick skin. I went through 10 surgeries in 8 years, including one back surgery, partial removal of my intestine and bladder surgery. Everything is still intact, I still have all of my parts minus an ovary and fallopian tube. I know pain, fear, isolation and grief. But I never became it.
My friend who has CFS asked me today; with all of your losses and your being so ill, where does your inner strength come from? How do you create such beautiful jewelry? I realize this is a compliment, but it angers me for some reason. Am I supposed to lay down and die? I am full of piss and vinegar...that's what it is. I can be really sick and I will find a way to make a necklace even if it's in my bed laying down. There is this creative part of me that must come out and I feel so much better for having done so. Not everyone is lucky enough to have that ability. Not everyone is well enough. And that's ok...as long as you don't wear it. I can't do like I used to, but I don't wear it. I don't concentrate on everything I can't do. I concentrate on what I can do. What purpose does it serve to wear it? Say goodbye to friends! Even just the virtual kind. Even as ill as I am, I eschew someone who just complains and never musters up any sunshine. And what's funny about that is, when I am really sick and someone else is super sick and negative, I want them away! We all need sun and light...that goes with the personality of a person too.
It is doing "no one" good service to advertise this illness as the end of a life. It is not. It is the end of the life as you knew it, as you had hoped for, but life is still here and negativity will get you nowhere. I have even done injustice in saying that this illness has ruined my life at times. Has it? No. Actually, it's taught me a lot. I wish I didn't have to learn those things, but it hasn't ruined my life. I don't let it. I still cry, I get angry and sometimes I even laugh at myself during these times because I laugh at my self indulgence. Some weeks may stink, some months may suck, but I try...TRY to say something positive about that day, about a moment, about something.
I believe that we all get what we put out. If you are always negative, you will attract the same. If you are positive, you will attract positive people. It's all up to you! To be or not to be....that is the question!
My favorite posts and I am going to say names here are Victoria's ever shining posts of hope and she walks us through the day to day; mattresses, grocery shopping, retirement. Funny, happy, inspiring is what comes to mind. Kelvin, gosh Kelvin you crack me up. I love your pictures and you have that dry sense of humor. That British dryness. I love it. Laurel. Laurel, for as ill as you are, you have this spirit that I can see in your pictures and feel with your words. In bed mostly, not much energy but full of hope and life. Thank you. It's truly inspiring to all of us and hopefully to those that are most ill. The woman who lives in a tent, I believe?? Love it. I can smell the flowers and feel the coolness of the fresh air. I feel a sense of invigoration after reading your blogs. I feel life and purpose! That means so much.
To be or not to be..."a victim." We are all ill. We all have pain, we all for the most part have financial woes, but it's the human spirit that lives on. If your spirit is sinking, you are in trouble and it's easy to be like that when one is so ill. Try not to stay there. Hard to do, but harder to overcome this illness if you wallow in your misery.
Years ago, I was in my 20's and ill. I was always the CFS gal though, that half lived meaning; I could still work, go out here and there, etc. I worked in radio in Philadelphia, which was the 4th largest radio market in the country. I worked part time. Always a music buff, I loved it. I was a spitfire. I have been called the sledgehammer. Kind of funny. Why? Because I am blunt. Anyone who really knows me knows I have a filter, but I can lay it on the line without a thought. As the years have passed, that intensity has died down. It makes me sad because I know it's the illness. I used to be able to really debate too. Not anymore. Too much work. I listen more now, which actually has proven to be wise. Talking is overrated. Sometimes it's good to listen instead of talk. I need silence in the mornings, and music isn't heard throughout my house like it once was. But, I can still tell you every single Led Zeppelin album in order and what dates each album came out or who wrote "Claire de Lune" and how long the song is....how long it truly is.
I was driving today and thinking, "God, I miss dancing." I am such a good dancer. I love to dance. I took bellydance lessons for a year and when I was younger I won all kinds of awards for dancing. I rarely dance anymore. I just can't. But guess what? It's still there. Just not as much. But there is a beauty to that because when it is there, I unleash it and "there I AM." ME. I am still here, underneath the layers of illness. I may not shine as bright as I used to, but anyone who gets to have a peak at all of the facets that make up this diamond, is lucky! And in some respects, maybe I shine brighter because I am ill, have suffered some severe losses, I can still laugh and my eyes still sparkle. My ex boyfriend, who mostly saw me in pajamas, always called me a rockstar. When I asked why, he answered, "Because in spite of your illness, you are still feisty and beautiful and you shine brighter than those who are well." I loved that.
I know what it's like to be horribly ill. Not only to be horribly ill but to have no one. To be alone. Years ago, I had to fly 5 hours to San Francisco for major surgery. I had endometriosis. I saw Dr. Debra Metzger, one of the best. It was $10,000 out of pocket. $10,000 I didn't have. I was desperate. I was worried sick. What if it doesn't work? I went by myself and lived with a family who took me in. The woman who took me in had endometriosis. Why did this happen? Not one person in my family wanted to take off from work and come with me. NO ONE. I had the surgery and developed a massive blood clot. I had to be choppered from the East Bay to San Fran. I almost died. I was in the hospital for 7 days for this massive blood clot. My doctor was shocked that not one family member came out to see me. It was embarrassing. I am not revealing this for someone to feel sorry for me. I had a friend who was diagnosed with lyme disease recently. She isn't as ill as I am and yet every doctor's appointment, she will not go alone. She is too scared. I think having support is wonderful and if you are so ill that you need someone to assist you or help you, it makes sense to have help. I never have help, it bothers me when really ill, but sometimes, it is what it is and I have developed thick skin. I went through 10 surgeries in 8 years, including one back surgery, partial removal of my intestine and bladder surgery. Everything is still intact, I still have all of my parts minus an ovary and fallopian tube. I know pain, fear, isolation and grief. But I never became it.
My friend who has CFS asked me today; with all of your losses and your being so ill, where does your inner strength come from? How do you create such beautiful jewelry? I realize this is a compliment, but it angers me for some reason. Am I supposed to lay down and die? I am full of piss and vinegar...that's what it is. I can be really sick and I will find a way to make a necklace even if it's in my bed laying down. There is this creative part of me that must come out and I feel so much better for having done so. Not everyone is lucky enough to have that ability. Not everyone is well enough. And that's ok...as long as you don't wear it. I can't do like I used to, but I don't wear it. I don't concentrate on everything I can't do. I concentrate on what I can do. What purpose does it serve to wear it? Say goodbye to friends! Even just the virtual kind. Even as ill as I am, I eschew someone who just complains and never musters up any sunshine. And what's funny about that is, when I am really sick and someone else is super sick and negative, I want them away! We all need sun and light...that goes with the personality of a person too.
It is doing "no one" good service to advertise this illness as the end of a life. It is not. It is the end of the life as you knew it, as you had hoped for, but life is still here and negativity will get you nowhere. I have even done injustice in saying that this illness has ruined my life at times. Has it? No. Actually, it's taught me a lot. I wish I didn't have to learn those things, but it hasn't ruined my life. I don't let it. I still cry, I get angry and sometimes I even laugh at myself during these times because I laugh at my self indulgence. Some weeks may stink, some months may suck, but I try...TRY to say something positive about that day, about a moment, about something.
I believe that we all get what we put out. If you are always negative, you will attract the same. If you are positive, you will attract positive people. It's all up to you! To be or not to be....that is the question!
