When I started this blog I wanted to use it to poke fun at myself, my illness, a way to reflect on a life that is getting increasingly harder for me to live. It’s a mere existence than living. I do no longer have the feeling of contributing something useful to the world or at home for that matter. I used to get compliments or thank you’s for the small or big things I did even it was just as small as cooking a meal. Nowadays I have to ask for them, how pathetic is that. I do it but at the same time I know it will make me feel inadequate. I always thought it was normal to give each other compliments or thank someone for doing something for each other, it makes the other person feel good and loved. Me having to ask for a compliment or a thank you, what does that mean? Does it mean I’m not worthy of getting compliments or thank you’s or is it that what I do so insignificant that it doesn’t deserve or generate a compliment or thank you?
I wish I could do more, do BIG things, make a difference in someone’s life, have brilliant career, have interesting things to tell in the evening after the day comes to an end, but I don’t, I can’t. I can do small things, like cook a meal, have a cup of tea ready when my husband comes home and I expect the same recognition for that as if I did a BIG thing. I guess that’s were the discrepancy lies. Other people don’t recognize it as a major effort on my part. They don’t know that by doing that small thing for them I have given up the total energy I had available for that day and won’t be able to do anything else. Like writing my blog because I’m zapped of life’s juice.
It’s not that I didn’t mention this to them, it’s that they take something like having dinner at night for granted, it’s business as usual to them while for me it’s a major accomplishment. It has not always been this way, I used to get acknowledged for the little, small things I did, but somewhere down the road it has stopped and with that, a little bit of my self worth. I have been hurt by these little things more than I can tell, it makes me feel so inadequate and worthless. My soul and spirit is longing for that small acknowledgement of usefulness, than I make the mistake by asking for it. Which only makes it worse because I know it’s not freely given and meant but asked for and received on command.
When does a life stops being worth living? This life what I live is increasingly sad, full of grief, frustration, anger, pain, pain and pain and nowhere to escape to. I hate it when people tell me to look at the things that I still CAN do, yes I can still read a newspaper in parts, not that I remember a word what I have read 2 hours after that, yes I can still write my blog, email friends, pet my cats and every once in a while I go out to a place to drink coffee or to a shop.
Is that fulfilling, is that feeding my soul, makes my spirit soar? NO, I crave human contact, a good conversation, a giggle with a girlfriend, a gossip, a shoulder to cry on, a comforting hug, the fun of doing something together, creating, baking, cooking, a phone call just because I was thinking of you. An in depth contact, people my soul connects with. I miss working with people who are like minded, people I don’t have to explain why or what I mean or do, I miss interaction the sparring between friends, the jokes, the laughter, the crying. I’m lonely. Life passes me by, I try to connect with people online as much as possible, I try to help people online as much as I can even though my hands might hurt typing and I make a 100 errors a minute typing I don’t mind if it will make a difference in that person’s life.
But it still makes me feel like a hermit, something society has spit out. It hurts more than anything, it’s no the life I envisioned years ago. Even when I was ill than it didn’t cross my mind that I would become so depended on one person, that I wouldn’t be able to leave my house if that person wasn’t around, I didn’t foresee that I wouldn’t be able to shower by myself, that I would need help putting on my shoes or getting dressed. I always thought I would get a bit better, that my quality of life would improve but it hasn’t.
I never would have thought that I wouldn’t be able to walk around in my neighborhood, or through the park, that I wouldn’t be able to take public transport to get somewhere, that I can’t make a dr’s appointment and go on my own. I never imagined that if I needed something from the store I had to wait for weeks before I was able to get someone to get it for me and not run out to the store to get a roll of tape myself.
Me, the independent feminist, that girl who proudly burned her bra on the barricades in Paris, who took care of herself since she was a little girl, she who has a deep understanding of the universe and who can read people easily, that woman who is a highly sensitive person(HSP) an introvert but still craves human contact. That girl who was so assertive before it even was in fashion for women to be assertive, that girl who could do anything a boy could do. The girl who people loved to be around who everyone was always happy to see, who could dance night after night after night and never got tired of it, who loved to sing, to make music, who was a promising painter.....
That girl.. that woman... who is now depended on another person for her daily needs, where did she go to? I miss her so much, I crave for a little piece of the life that she had.
This life I have now is nothing but an empty shell of what it was before, my life was full, FUN, meaningful and active, filled with people who cared for each other and the world they lived in. If this is all there is for me and if it’s not getting any better I will have to find a way to make it more fulfilling, I will have to find things I can do to make myself feel useful. If not I’m afraid I will come to the conclusion that with all the pain it is not worth living.
Not only has this disease that’s called M.E/CFIDS taken my physical life, it also threatens to invade my mental and spiritual life.
I can not let that happen.
# # #
I wish I could do more, do BIG things, make a difference in someone’s life, have brilliant career, have interesting things to tell in the evening after the day comes to an end, but I don’t, I can’t. I can do small things, like cook a meal, have a cup of tea ready when my husband comes home and I expect the same recognition for that as if I did a BIG thing. I guess that’s were the discrepancy lies. Other people don’t recognize it as a major effort on my part. They don’t know that by doing that small thing for them I have given up the total energy I had available for that day and won’t be able to do anything else. Like writing my blog because I’m zapped of life’s juice.
It’s not that I didn’t mention this to them, it’s that they take something like having dinner at night for granted, it’s business as usual to them while for me it’s a major accomplishment. It has not always been this way, I used to get acknowledged for the little, small things I did, but somewhere down the road it has stopped and with that, a little bit of my self worth. I have been hurt by these little things more than I can tell, it makes me feel so inadequate and worthless. My soul and spirit is longing for that small acknowledgement of usefulness, than I make the mistake by asking for it. Which only makes it worse because I know it’s not freely given and meant but asked for and received on command.
When does a life stops being worth living? This life what I live is increasingly sad, full of grief, frustration, anger, pain, pain and pain and nowhere to escape to. I hate it when people tell me to look at the things that I still CAN do, yes I can still read a newspaper in parts, not that I remember a word what I have read 2 hours after that, yes I can still write my blog, email friends, pet my cats and every once in a while I go out to a place to drink coffee or to a shop.
Is that fulfilling, is that feeding my soul, makes my spirit soar? NO, I crave human contact, a good conversation, a giggle with a girlfriend, a gossip, a shoulder to cry on, a comforting hug, the fun of doing something together, creating, baking, cooking, a phone call just because I was thinking of you. An in depth contact, people my soul connects with. I miss working with people who are like minded, people I don’t have to explain why or what I mean or do, I miss interaction the sparring between friends, the jokes, the laughter, the crying. I’m lonely. Life passes me by, I try to connect with people online as much as possible, I try to help people online as much as I can even though my hands might hurt typing and I make a 100 errors a minute typing I don’t mind if it will make a difference in that person’s life.
But it still makes me feel like a hermit, something society has spit out. It hurts more than anything, it’s no the life I envisioned years ago. Even when I was ill than it didn’t cross my mind that I would become so depended on one person, that I wouldn’t be able to leave my house if that person wasn’t around, I didn’t foresee that I wouldn’t be able to shower by myself, that I would need help putting on my shoes or getting dressed. I always thought I would get a bit better, that my quality of life would improve but it hasn’t.
I never would have thought that I wouldn’t be able to walk around in my neighborhood, or through the park, that I wouldn’t be able to take public transport to get somewhere, that I can’t make a dr’s appointment and go on my own. I never imagined that if I needed something from the store I had to wait for weeks before I was able to get someone to get it for me and not run out to the store to get a roll of tape myself.
Me, the independent feminist, that girl who proudly burned her bra on the barricades in Paris, who took care of herself since she was a little girl, she who has a deep understanding of the universe and who can read people easily, that woman who is a highly sensitive person(HSP) an introvert but still craves human contact. That girl who was so assertive before it even was in fashion for women to be assertive, that girl who could do anything a boy could do. The girl who people loved to be around who everyone was always happy to see, who could dance night after night after night and never got tired of it, who loved to sing, to make music, who was a promising painter.....
That girl.. that woman... who is now depended on another person for her daily needs, where did she go to? I miss her so much, I crave for a little piece of the life that she had.
This life I have now is nothing but an empty shell of what it was before, my life was full, FUN, meaningful and active, filled with people who cared for each other and the world they lived in. If this is all there is for me and if it’s not getting any better I will have to find a way to make it more fulfilling, I will have to find things I can do to make myself feel useful. If not I’m afraid I will come to the conclusion that with all the pain it is not worth living.
Not only has this disease that’s called M.E/CFIDS taken my physical life, it also threatens to invade my mental and spiritual life.
I can not let that happen.
# # #
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