Anybody out there? Am I still here?
Aug. 13th, 2008 06:20 pm![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
purplerabbitI am having a bad day. The depression today is so bad that it feels like I am literally choking on it. I tried taking my usual nap and all I could think of was how disconnected I felt from life.
The image that came to mind was a beached whale. This isn't a fat reference. I think bodies of all shapes and sizes are beautiful. But the image is that the whale is out of her element, stuck. In the water, she is powerful and graceful and free. But on the beach she is stuck, weighed down by her own body, unable to breath for the lack of ability to move, dying slowly. I feel like that much of the time. The fibromyalgia and injuries have taken away so much of my ability to move, to participate in the world around me that much of the time my flesh feels like a prison. I want to feel pleasure in my body. Most the time I just feel such overwhelming fatigue and pain that the only way I feel I can cope is to escape into my mind, into my writing.
I have written more in the last two years than in the 44 years previously. Given I have written all my life, and been published since I was nine, that is saying something. Only a few of my "real life" friends have any interest in what I write, and most people seem bored if I talk about it. That leaves me feeling even more isolated. They ask what I have been doing and I have so little to tell that isn't about my writing. I hate talking about my health most of the time. It's depressing for everyone involved. So the only people who really talk to me any more are those who are interested in my writing. It becomes a kind of weird circle I don't know what to do with.
I sometimes wonder if if it is worth the effort to actually post here. I know it's at least partially depression talking, but increasingly, I feel no one cares to hear what I have to say anyway. Ironically, I have another LJ where most of my "friends" there are people who have never met me but who read my writing. When I post there, I always get lots of replies, even to the non-fiction entries. Here, it feels like what I say just disappears into nothingness.
The best things in my life are embodied in my family right now. Even then, those are tinged with sadness in the way my illness disconnects me from them as well. I don't feel I give them what they need. I am withdrawn and even my son felt that this time.
I would like to find ways to improve my life. I just can't seem to find them. I have such short and unpredictable bursts of energy. I am still coming to terms with the idea that I will never be the person I was or want to be. I am not satisfied by myself right now but feel my options are so very limited. For example, I have practically given up driving. My pain and energy are so unpredictable that I don't want to endanger myself or others. This further limits me.
A few friends have been wonderful enough to meet me where I am. Meaning they come to visit me here or take me out for short excursions. It's wonderful when people do that. I can go to lunch or to a film. I have a couple hours of "up" time if a manage it right. I handle one-on-one or small groups better than large parties.
Speaking of parties: In addition to the unpredictable energy/pain levels, I often hesitate to come to parties because I don't want to be a burden on my hosts or on my partners. Since I can't really go without escort to help me, I sometimes stay home so that my partners can have an evening off without having to take care of me. It would be nice for them actually if when we did go out, other people helped them with my care. I can't really get up and down, for example, to get drinks and food. Sometimes it helps if there is somewhere quiet I can lay down if I get tired before my sweeties want to go home. Or if someone else could give me a ride home so they can stay to socialize. Or if the party is one they don't want to go to, if someone else wanted to escort me that evening. I don't know how this would all work, but I thought I would put it out there since I know it is the stuff we have to consider when I go anywhere.
And, of course, I have to be comfortable enough to let someone else take care of me. This is harder than it sounds. I have had some bad experiences with it. Going somewhere with someone else requires a level of trust that I don't think able bodied people understand. I need to know the person is going to respect my limits and help me if I need it. When I am out, I need someone with me who will help me keep an eye on my energy and make it safe for me to stop before I push too far.
For example, last year I went to the movies with a friend. The film and socializing was fun and we were talking afterwards. Then the friend decided, without asking me if it was okay, to bring up stuff that she was unhappy with me about. I was already at the limits of how long I can be up and I felt ambushed. I can do processing, but only limited and not after doing something else. And not without warning. I wanted a fun outing with my friend and I felt like I got dumped on at the end there. It really ruined the experience for me. I have had others where I was out with friends and explained I was hitting my limit but the friends didn't listen and insisted on pushing on anyway. I just can't do that.
So this has been a bit of ramble. I don't know if it will help or not. I am trying to reach out more though. Maybe writing it will help me at least.
The image that came to mind was a beached whale. This isn't a fat reference. I think bodies of all shapes and sizes are beautiful. But the image is that the whale is out of her element, stuck. In the water, she is powerful and graceful and free. But on the beach she is stuck, weighed down by her own body, unable to breath for the lack of ability to move, dying slowly. I feel like that much of the time. The fibromyalgia and injuries have taken away so much of my ability to move, to participate in the world around me that much of the time my flesh feels like a prison. I want to feel pleasure in my body. Most the time I just feel such overwhelming fatigue and pain that the only way I feel I can cope is to escape into my mind, into my writing.
I have written more in the last two years than in the 44 years previously. Given I have written all my life, and been published since I was nine, that is saying something. Only a few of my "real life" friends have any interest in what I write, and most people seem bored if I talk about it. That leaves me feeling even more isolated. They ask what I have been doing and I have so little to tell that isn't about my writing. I hate talking about my health most of the time. It's depressing for everyone involved. So the only people who really talk to me any more are those who are interested in my writing. It becomes a kind of weird circle I don't know what to do with.
I sometimes wonder if if it is worth the effort to actually post here. I know it's at least partially depression talking, but increasingly, I feel no one cares to hear what I have to say anyway. Ironically, I have another LJ where most of my "friends" there are people who have never met me but who read my writing. When I post there, I always get lots of replies, even to the non-fiction entries. Here, it feels like what I say just disappears into nothingness.
The best things in my life are embodied in my family right now. Even then, those are tinged with sadness in the way my illness disconnects me from them as well. I don't feel I give them what they need. I am withdrawn and even my son felt that this time.
I would like to find ways to improve my life. I just can't seem to find them. I have such short and unpredictable bursts of energy. I am still coming to terms with the idea that I will never be the person I was or want to be. I am not satisfied by myself right now but feel my options are so very limited. For example, I have practically given up driving. My pain and energy are so unpredictable that I don't want to endanger myself or others. This further limits me.
A few friends have been wonderful enough to meet me where I am. Meaning they come to visit me here or take me out for short excursions. It's wonderful when people do that. I can go to lunch or to a film. I have a couple hours of "up" time if a manage it right. I handle one-on-one or small groups better than large parties.
Speaking of parties: In addition to the unpredictable energy/pain levels, I often hesitate to come to parties because I don't want to be a burden on my hosts or on my partners. Since I can't really go without escort to help me, I sometimes stay home so that my partners can have an evening off without having to take care of me. It would be nice for them actually if when we did go out, other people helped them with my care. I can't really get up and down, for example, to get drinks and food. Sometimes it helps if there is somewhere quiet I can lay down if I get tired before my sweeties want to go home. Or if someone else could give me a ride home so they can stay to socialize. Or if the party is one they don't want to go to, if someone else wanted to escort me that evening. I don't know how this would all work, but I thought I would put it out there since I know it is the stuff we have to consider when I go anywhere.
And, of course, I have to be comfortable enough to let someone else take care of me. This is harder than it sounds. I have had some bad experiences with it. Going somewhere with someone else requires a level of trust that I don't think able bodied people understand. I need to know the person is going to respect my limits and help me if I need it. When I am out, I need someone with me who will help me keep an eye on my energy and make it safe for me to stop before I push too far.
For example, last year I went to the movies with a friend. The film and socializing was fun and we were talking afterwards. Then the friend decided, without asking me if it was okay, to bring up stuff that she was unhappy with me about. I was already at the limits of how long I can be up and I felt ambushed. I can do processing, but only limited and not after doing something else. And not without warning. I wanted a fun outing with my friend and I felt like I got dumped on at the end there. It really ruined the experience for me. I have had others where I was out with friends and explained I was hitting my limit but the friends didn't listen and insisted on pushing on anyway. I just can't do that.
So this has been a bit of ramble. I don't know if it will help or not. I am trying to reach out more though. Maybe writing it will help me at least.
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Hugs
Date: 2008-08-14 01:51 am (UTC)Re: Hugs
Date: 2008-08-14 07:26 am (UTC)no subject
Date: 2008-08-14 02:24 am (UTC)I love you and I still care about what you have to say. I actually *do* want to read what you've wrote but I'm very overwhelmed by the quantity and limited by how much I can handle staring at a screen to read (I do better with printed on paper writing than I do with internet reading)
no subject
Date: 2008-08-14 07:26 am (UTC)no subject
Date: 2008-08-14 02:48 am (UTC)no subject
Date: 2008-08-14 08:15 am (UTC)no subject
Date: 2008-08-14 03:38 am (UTC)Sending love and gentle hugs, avoiding the tender points on your arms :)
no subject
Date: 2008-08-14 07:28 am (UTC)Next massage date?
no subject
Date: 2008-08-14 03:43 am (UTC)no subject
Date: 2008-08-14 07:57 am (UTC)no subject
Date: 2008-08-14 04:03 am (UTC)no subject
Date: 2008-08-14 08:02 am (UTC)The writing is the most therapeutic part of my life. (Besides my child.) I write every day. I have (with co-authors) written over two million words of fiction in the last two years (might be three now). Not kidding about that. Most of it is "fan fiction." It doesn't make money but it does take my mind off the pain and gives me something I can do sitting down.
But it can be a bit isolating from real life.
no subject
Date: 2008-08-14 04:10 am (UTC)no subject
Date: 2008-08-14 08:14 am (UTC)no subject
Date: 2008-08-14 03:05 pm (UTC)no subject
Date: 2008-08-14 04:16 am (UTC)I would enjoy being on your writing site, and I would enjoy reading what you write. Just by what you post on this site, I already like the writing style you have developed.
I respect your openness about posting this. For years, I hid the fact I have bipolar illness, type 2, from people because I was so embarrassed about it. But I finally broke down and admitted to my close friends I had a chronic disorder. They all told me it explained why I would disappear and then reemerge. But on a scale of 0 (no depression) to 10 (the most severe depresson), I was hitting an 8-1/2 to a 9. By being honest about my illness and when I was cycling, they were able to finally help me. Admitting it was so difficult.
no subject
Date: 2008-08-14 08:21 am (UTC)It can be hard to admit an illness. People don't really understand and often see it as a personal failing one should overcome.
no subject
Date: 2008-08-14 04:34 am (UTC)no subject
Date: 2008-08-14 08:03 am (UTC)no subject
Date: 2008-08-16 05:10 am (UTC)no subject
Date: 2008-08-14 05:38 am (UTC)That's all.
Just *hugs*. Sounds like you need them. I leave you a large case of single-serving GriffHugs (patent pending). Take as needed.
no subject
Date: 2008-08-14 08:14 am (UTC)no subject
Date: 2008-08-14 07:04 am (UTC)no subject
Date: 2008-08-14 07:25 am (UTC)no subject
Date: 2008-08-15 09:01 am (UTC)Thank you for reaching out
Date: 2008-08-17 08:31 am (UTC)I know that reading it helps me understand
where you are at and how I can be a better
friend / support to you.
And I want you to know that you are not
alone in your concerns, in either direction.
Let me explain that. You are not alone in
the concerns you express as they relate to
how people can relate to and support DAWN,
and you are not alone in the concerns you
express because other people, although
their situations are less extreme, also
have the same concerns.
It is the wee hours in Albuquerque, where
I am visiting and need to be semi-conscious
semi-early, so I'm not going to write more
here, but perhaps we can talk more about
this another time.
In the meantime, consider yourself hugged --
gently. : )
With affection,
Katarina.
no subject
Date: 2008-08-24 04:27 am (UTC)Just so you know, I'm getting married in 2 weeks, so right now my response times may be a bit slower than usual. :-) (Doesn't mean I'm unavailable right now; just slower and somewhat distracted in general.) When I get back from the honeymoon in late September, things will be back to normal for me.