This post was begun last winter, but was never published. Why? Because this last year has been hell on wheels in both good and not so good ways. Last winter and spring saw the joy and stress of a wedding in the family. My niece, to be precise, who is more daughter than niece. This summer was awash in the increased inability to breath, and all that comes with that. And here it is now fall and Halloween is just around the corner. It seems that my life is becoming this roller coaster ride more and more so with each passing year. And since I seem to have a breather at the moment from that wacky ride, I think I should finally post several of the blog entries I have been holding aside till now.
Here is the first, from last winter:
At the beginning of August 2015 I expressed on Facebook, to family and friends, how I had a growing need to share my and my daughter's life with them all. I felt the need to show the reality of it all, the need to be understood. It was scary, and writing about it, creating the list was often like smashing one's fingers in the car door. It hurt. It hurt to see it, write it, to have to pay attention to it all at once. Normally we ignore what is not being a squeaky wheel, and "that" is how we do it. "That" is how we survive. So writing it down, having to organize it all, THAT was sheer pain, emotional pain. And it still hurts. In some ways I am in shock. I keep seeing the vastness of it and mentally shaking my head, saying over and over again "That is not possible! That just can not be real, that can not be our reality! No one could survive that, let alone decades and decades of it!" And I haven't even listed all the endocrine and family Metabolism problems. Yet it explains how I feel now and the quickly growing incapacitate that I am going through. Soon Mulu will have to bath me because that is becoming an issue. She already has to brush my hair because my hands, arms, and upper body are in so much pain, and dysfunction. Most of you do not know, but as a child I was always moving. I danced, and cavorted, stretched, twirled all the time. Even sitting I was in motion. Now I sit perfectly still, for doing so minimizes the pain that is all over my body, even the soles of my feet and palms of my hands, hurt all the time. These days the emotional suffering is as bad as the physical. I cry because I want, need a hot bath, but can not fit in my tub. And if I do manage to sit in it, I can not get out without wrenching my back, and often throwing some of my rib heads out. I often lay on the couch dreaming of hot bath water. Showers, though great, just do not cut it anymore. So it is difficult to see my life diminish more and more everyday, and to do so virtually alone. That, I think, was the impetus to share the reality of our lives with all of you. That is why I am writing this blog.
I have been thinking a lot about all that everyone has posted to me this past week, as I had my emotional melt down. Thank you, by the way LOL. One friend said that looking for a "heart connection" via FB is probably not a good idea. I agree. But that is not what I was seeking, though that did come into it afterwards. What I was trying to do was be seen and to be heard. Do you know how many times I get "But you don't look disabled!", "You don't act disable! Good for you!", "You seem to be handling it well! You are so happy and cheerful! How wonderful!", or even "Well you don't act or look disabled, so it must not be that bad." Now these come from both strangers and friends, mostly unwittingly, and even from doctors and therapists. It seems people have the need to diminish the severity of your condition and life, to look at the bright side, as if you are not already aware of that. It makes them feel better and they think they are helping, or that that is their job at the moment. Denying a person's reality makes you feel better, but only harms the person you are speaking to. Empathy and compassion are more important and helpful than trying to "fix it", unless you are asked to.
So, writing this blog was born out of the realization that my needs are not being met, unreasonable expectations are being made of me, and people get frustrated or disappointed in me for not performing as they think I should, because they are unaware of my actual life. Like when I go to sleep and when I wake and thus have an inconvenient schedule, or how hard it is to be on time because I am fighting massive pain and/or exhaustion, or I simply can't breath and move fast at the same time. I realized that by not opening up about the realities of my life I was doing myself a disservice. It is not about "Oh pity me", though it can feel like that when speaking up, it was and is meant only to make people aware that when I say I need help, that if I do not get help, then what ever I needed help with never gets done. Or I injure myself trying to do it by myself. It is also so very hard to ask for help. I hate it with a passion, but as I get older, I need to. I am also so very tired of having to explain myself, my actions, my choices, and so forth, over and over again to people I know and love. I hate burdening people, but I also realize that my pride also gets in my way when I do not share all this.
Also, another reason for the "dreaded list" is because when people ask you "How are you dong." and you tell them honestly, even just a little, you soon realize they did not want to really know. So I and others like me say "Oh I am fine." Even when we are not, which is usually the case with chronic illness and chronic pain. There is only levels of bad and not as bad, never "fine". I had a friend once who would ask how I was, and when I said that I was doing better they would get very happy. But when I would say that things were bad she would get upset with me, or confused. I finally figured out and asked her if she thought that when I was better, that meant I was "getting over" my medical issues. And yap, that is exactly what she thought. I had to explain that "better" was relative and that I would never really be fine, but that fine to me meant that I was tolerating all that I had to deal with better than usual. After she realized that, our whole relationship change and improved.
So that is my thoughts on all this. And, though it was hard, and I cried more than once, it was good to write that long dreaded list, and a lot of good came out of it because of all of you that replied and acknowledged my situation. Thank you all for that. It got me through it!
Here is the first, from last winter:
At the beginning of August 2015 I expressed on Facebook, to family and friends, how I had a growing need to share my and my daughter's life with them all. I felt the need to show the reality of it all, the need to be understood. It was scary, and writing about it, creating the list was often like smashing one's fingers in the car door. It hurt. It hurt to see it, write it, to have to pay attention to it all at once. Normally we ignore what is not being a squeaky wheel, and "that" is how we do it. "That" is how we survive. So writing it down, having to organize it all, THAT was sheer pain, emotional pain. And it still hurts. In some ways I am in shock. I keep seeing the vastness of it and mentally shaking my head, saying over and over again "That is not possible! That just can not be real, that can not be our reality! No one could survive that, let alone decades and decades of it!" And I haven't even listed all the endocrine and family Metabolism problems. Yet it explains how I feel now and the quickly growing incapacitate that I am going through. Soon Mulu will have to bath me because that is becoming an issue. She already has to brush my hair because my hands, arms, and upper body are in so much pain, and dysfunction. Most of you do not know, but as a child I was always moving. I danced, and cavorted, stretched, twirled all the time. Even sitting I was in motion. Now I sit perfectly still, for doing so minimizes the pain that is all over my body, even the soles of my feet and palms of my hands, hurt all the time. These days the emotional suffering is as bad as the physical. I cry because I want, need a hot bath, but can not fit in my tub. And if I do manage to sit in it, I can not get out without wrenching my back, and often throwing some of my rib heads out. I often lay on the couch dreaming of hot bath water. Showers, though great, just do not cut it anymore. So it is difficult to see my life diminish more and more everyday, and to do so virtually alone. That, I think, was the impetus to share the reality of our lives with all of you. That is why I am writing this blog.
I have been thinking a lot about all that everyone has posted to me this past week, as I had my emotional melt down. Thank you, by the way LOL. One friend said that looking for a "heart connection" via FB is probably not a good idea. I agree. But that is not what I was seeking, though that did come into it afterwards. What I was trying to do was be seen and to be heard. Do you know how many times I get "But you don't look disabled!", "You don't act disable! Good for you!", "You seem to be handling it well! You are so happy and cheerful! How wonderful!", or even "Well you don't act or look disabled, so it must not be that bad." Now these come from both strangers and friends, mostly unwittingly, and even from doctors and therapists. It seems people have the need to diminish the severity of your condition and life, to look at the bright side, as if you are not already aware of that. It makes them feel better and they think they are helping, or that that is their job at the moment. Denying a person's reality makes you feel better, but only harms the person you are speaking to. Empathy and compassion are more important and helpful than trying to "fix it", unless you are asked to.
So, writing this blog was born out of the realization that my needs are not being met, unreasonable expectations are being made of me, and people get frustrated or disappointed in me for not performing as they think I should, because they are unaware of my actual life. Like when I go to sleep and when I wake and thus have an inconvenient schedule, or how hard it is to be on time because I am fighting massive pain and/or exhaustion, or I simply can't breath and move fast at the same time. I realized that by not opening up about the realities of my life I was doing myself a disservice. It is not about "Oh pity me", though it can feel like that when speaking up, it was and is meant only to make people aware that when I say I need help, that if I do not get help, then what ever I needed help with never gets done. Or I injure myself trying to do it by myself. It is also so very hard to ask for help. I hate it with a passion, but as I get older, I need to. I am also so very tired of having to explain myself, my actions, my choices, and so forth, over and over again to people I know and love. I hate burdening people, but I also realize that my pride also gets in my way when I do not share all this.
Also, another reason for the "dreaded list" is because when people ask you "How are you dong." and you tell them honestly, even just a little, you soon realize they did not want to really know. So I and others like me say "Oh I am fine." Even when we are not, which is usually the case with chronic illness and chronic pain. There is only levels of bad and not as bad, never "fine". I had a friend once who would ask how I was, and when I said that I was doing better they would get very happy. But when I would say that things were bad she would get upset with me, or confused. I finally figured out and asked her if she thought that when I was better, that meant I was "getting over" my medical issues. And yap, that is exactly what she thought. I had to explain that "better" was relative and that I would never really be fine, but that fine to me meant that I was tolerating all that I had to deal with better than usual. After she realized that, our whole relationship change and improved.
So that is my thoughts on all this. And, though it was hard, and I cried more than once, it was good to write that long dreaded list, and a lot of good came out of it because of all of you that replied and acknowledged my situation. Thank you all for that. It got me through it!
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