The loved ones
Hi there,
I would like to take a moment and step aside to address not only those who take care of us, but are just in our lives in general. I know it's tough for us to express to you what we need and want and that can make it frustrating on your end. There are a few things that we want you to know, and understand, but not always want to say.
First off, we love you and appreciate you. We are so thankful for you still being by our side even when we don't say so. We love everything you do. Thanks for understanding when we literally don't feel like going out, not because its not interesting to us, but we are mentally and physically drained. Thanks for being our friends, and our care givers. I know that sometimes that we don't tell you thank you. Don't take it to heart when we don't. Sometimes, we just don't know how to thank you enough.
Yes, sometimes we annoy ourselves. We know we are using the same reasons over and over again. No, we are not "just using it as an excuse." Although, sometimes we do second guess ourselves on it. (What if I am just saying that because I don't want to? What if I really can make it all day walking around?) I honestly hear myself telling my friends that I don't feel up to something because I'm in pain, and get annoyed of my own excuse. Not because I am using it, but because my body is forcing me to use said excuse again. We don't just say things to get out of whatever event it is that we are bailing out on. We seriously just can't. So, if we cancel last minute with the same reason as always, trust us, you are not the only one who is sick of that excuse, we are too.
We really do need help, even when we reject it. I personally have a very hard time asking for help. I am independent, and for some reason, in my silly little brain, asking for help is a sign of weakness. I want so badly to be able to do everything myself. I am, however, finding that the small tasks are difficult some days. So, ask us! Sometimes, we just need you to either ask us if we want your help or flat out do it for us without asking. (Depending on our level of stubbornness.) We appreciate it. It feels like you care. Even if we say no, we at least feel noticed. And sometimes that is just the boost of confidence we need. On the other hand, please don't ask until we are annoyed. What I mean by that is, if we say no to your offer of help, please don't repeatedly ask until we give in and let you do it for us. That is incredibly frustrating.
Similarly, we are not incapable. For some reason, our society believes that if someone has a chronic illness, they can't do anything for themselves and now need to be babied. I really, really, really, dislike that. We are not going to break if we pick up a box. We know our limits. We know we are sick. Please, don't continually remind us that we are sick. That we are no longer able to do anything. Don't tell us we can't do something. It is infuriating. It's bad enough to know our body isn't normal, but to be told that we are not capable, or that we shouldn't do something really hurts. If we think we can, please let us. Like I said previously, ask to help, but don't tell us we can't.
Sometimes, our self esteem takes a beating. Please don't tell me to get over it, or that there are other people who have it worse. That doesn't help any. Missing out on fun stuff really stinks. Especially when its your own body preventing you from going. But when you add having to cancel on friends, and miss out on hanging out with other human beings rather than your dvd player and blanket, and being in ridiculous amounts of physical pain, it is emotionally draining. I sometimes just want to cry but am so tired that it is hard to. Emotions in general are wacky. We have times that we are sad and mad and anxious and tired, all at once. We just want so badly to have normal bodies that aren't attacking themselves. And thinking about that makes our self esteem plummet into the ground. When this happens, just support us, let us cry, and love us. Thats all we ask. We know we are an emotional wreck. We know we are being irrational. Just let us.
Oh, and we are not, by any means, lazy. Seriously. Yes, we just spent an entire day in our pajamas and only got up to pee or get food. Yes, we had plans for the day and instead binge watched an entire season of our favorite show. Mind you we also did this while being in crazy amounts of pain. So, unless you consider "lazy" as having to talk yourself into getting out of bed, not because you don't feel like starting the day, but because you know the instant you put your feet on the ground you are going to feel massive amounts of pain that will make you want to throw up or pass out or both, then sure, we are lazy. There are days where all we did, was get up and shower and make ourselves semi-decent enough to go into public, and we feel so accomplished! Hey, I put on sneakers, jeans, AND a necklace today! Its like a whole step up from yesterdays yoga pants and flip flops! I deserve an award! (And possibly a cape...)
Lastly, take a look at your life. Look at your body. Was it difficult getting out of a chair today? Were you treated different because someone thought you were incapable? Did you have to have to think about when your next dose of medicine was? Or how your body is being attacked by something that was supposed to protect you (i.e. your immune system)? Did you have a hard time getting ready this morning? Did you have pain by doing something as simple as reaching for the salt shaker at the dinning table? Most likely we did today. Don't pity us, but just take a moment to understand. Appreciate it.
I hope this helped to understand us a little bit more. I know I missed so much. It is so very difficult to express to loved ones any of this. Maybe, this will make it a little less frustrating on your end.
Nikki De
I would like to take a moment and step aside to address not only those who take care of us, but are just in our lives in general. I know it's tough for us to express to you what we need and want and that can make it frustrating on your end. There are a few things that we want you to know, and understand, but not always want to say.
First off, we love you and appreciate you. We are so thankful for you still being by our side even when we don't say so. We love everything you do. Thanks for understanding when we literally don't feel like going out, not because its not interesting to us, but we are mentally and physically drained. Thanks for being our friends, and our care givers. I know that sometimes that we don't tell you thank you. Don't take it to heart when we don't. Sometimes, we just don't know how to thank you enough.
Yes, sometimes we annoy ourselves. We know we are using the same reasons over and over again. No, we are not "just using it as an excuse." Although, sometimes we do second guess ourselves on it. (What if I am just saying that because I don't want to? What if I really can make it all day walking around?) I honestly hear myself telling my friends that I don't feel up to something because I'm in pain, and get annoyed of my own excuse. Not because I am using it, but because my body is forcing me to use said excuse again. We don't just say things to get out of whatever event it is that we are bailing out on. We seriously just can't. So, if we cancel last minute with the same reason as always, trust us, you are not the only one who is sick of that excuse, we are too.
We really do need help, even when we reject it. I personally have a very hard time asking for help. I am independent, and for some reason, in my silly little brain, asking for help is a sign of weakness. I want so badly to be able to do everything myself. I am, however, finding that the small tasks are difficult some days. So, ask us! Sometimes, we just need you to either ask us if we want your help or flat out do it for us without asking. (Depending on our level of stubbornness.) We appreciate it. It feels like you care. Even if we say no, we at least feel noticed. And sometimes that is just the boost of confidence we need. On the other hand, please don't ask until we are annoyed. What I mean by that is, if we say no to your offer of help, please don't repeatedly ask until we give in and let you do it for us. That is incredibly frustrating.
Similarly, we are not incapable. For some reason, our society believes that if someone has a chronic illness, they can't do anything for themselves and now need to be babied. I really, really, really, dislike that. We are not going to break if we pick up a box. We know our limits. We know we are sick. Please, don't continually remind us that we are sick. That we are no longer able to do anything. Don't tell us we can't do something. It is infuriating. It's bad enough to know our body isn't normal, but to be told that we are not capable, or that we shouldn't do something really hurts. If we think we can, please let us. Like I said previously, ask to help, but don't tell us we can't.
Sometimes, our self esteem takes a beating. Please don't tell me to get over it, or that there are other people who have it worse. That doesn't help any. Missing out on fun stuff really stinks. Especially when its your own body preventing you from going. But when you add having to cancel on friends, and miss out on hanging out with other human beings rather than your dvd player and blanket, and being in ridiculous amounts of physical pain, it is emotionally draining. I sometimes just want to cry but am so tired that it is hard to. Emotions in general are wacky. We have times that we are sad and mad and anxious and tired, all at once. We just want so badly to have normal bodies that aren't attacking themselves. And thinking about that makes our self esteem plummet into the ground. When this happens, just support us, let us cry, and love us. Thats all we ask. We know we are an emotional wreck. We know we are being irrational. Just let us.
Oh, and we are not, by any means, lazy. Seriously. Yes, we just spent an entire day in our pajamas and only got up to pee or get food. Yes, we had plans for the day and instead binge watched an entire season of our favorite show. Mind you we also did this while being in crazy amounts of pain. So, unless you consider "lazy" as having to talk yourself into getting out of bed, not because you don't feel like starting the day, but because you know the instant you put your feet on the ground you are going to feel massive amounts of pain that will make you want to throw up or pass out or both, then sure, we are lazy. There are days where all we did, was get up and shower and make ourselves semi-decent enough to go into public, and we feel so accomplished! Hey, I put on sneakers, jeans, AND a necklace today! Its like a whole step up from yesterdays yoga pants and flip flops! I deserve an award! (And possibly a cape...)
Lastly, take a look at your life. Look at your body. Was it difficult getting out of a chair today? Were you treated different because someone thought you were incapable? Did you have to have to think about when your next dose of medicine was? Or how your body is being attacked by something that was supposed to protect you (i.e. your immune system)? Did you have a hard time getting ready this morning? Did you have pain by doing something as simple as reaching for the salt shaker at the dinning table? Most likely we did today. Don't pity us, but just take a moment to understand. Appreciate it.
I hope this helped to understand us a little bit more. I know I missed so much. It is so very difficult to express to loved ones any of this. Maybe, this will make it a little less frustrating on your end.
Nikki De
Interested in more reading material? Check out my book!
Wings by Nicole Harman is available now in both ebook and paperback format on both Amazon and Barnes&Noble.
Comments
Post a Comment