The past couple of weeks has been the most disheartening time I've had in a long time. Due to not being able to exercise the way I have been for years, my stomach and all my muscles have become flabby and sort of disgusting. I hate it, but I really didn't think others had noticed or would care. I mean, I'm still not the 405lbs teenager I was but I have gained some of my weight back (10lbs. 10 damn pounds . . .) and it's a horrible feeling. But yet when I was 405lbs people didn't speak to me the way people have in the past two weeks. Of course, they talked about me behind my back, whispered and giggled and would do mean things, but hardly anyone had enough courage to say something to me. Probably because . . .I weighed 405lbs. I would sit on them and forget about it.
I wonder if people stop and think before they say something to someone. Does pointing out that I'm large make me more likely to be able to exercise? Does it take away my MS and give me back the functioning body I had almost a year ago? No. It doesn't. Why say anything at all if it isn't conducive to the situation? Telling me to get my large ass up off a sidewalk where I was changing shoes didn't cause me to suddenly be skinny and made you piss off and look like an asshole to many people.
Doing online dating after years of having what you thought was a loving relationship is hard. It's made a lot harder when you don't know what people are looking for anymore. I'm 30, not some 20 year old fuck bunny. I just want stability and compassion, humor and a decent amount of intelligence. I also don't want to feel like I'm settling because of my weight. That's what caused my first marriage and my first divorce. I'm better than that and I deserve better than that. Yet I feel I have to put a warning about my body on my profile (which too many don't read!) that explains that I am a big girl weight wise and that comments about my body will get you blasted because I'm too smart to put up with that shit. You would think saying that would be warning enough that rude comments will be treated like you're the scum of the earth, right? Apparently not.
How dare I, a fat girl, turn down what is a decently good looking guy who just happened to be the exact type of person I don't want in my life? How dare I, a fat girl, not want to send nudes because we aren't horny teenagers? How dare I, a fat girl, not be flattered by dick pics? That's pretty much been the running spiel I've gotten in the past few weeks. When guys have been interested and seemed decent enough to ask for a full body, fully clothed picture and received it, I get "you're misleading. You don't look that fat in your profile picture. You work angles to hide your body. I couldn't be interested in that."
First of all, my profile literally says I'm fat. Don't like it? Fuck off. It isn't misleading to literally tell someone that you're fat. You're the douche that shouldn't be surprised when the fat girl who says she's fat turns out to be . . .fat. Secondly, working angles is a myth. I lose weight in my face and neck first and gain it there last for whatever reason. So unless I purposely give myself a double chin and force myself to have bad posture, my weight isn't noticeable in a face selfie. It is noticeable in a lot of my pictures that aren't selfies, however. So I am not working angles. Finally . . .if someone cannot be interested in me because of my weight despite the fact that we have hit it off on a personality level . . .maybe that person should work on their own issues with body image and leave mine alone instead of slinging insults. I can understand body chemistry. I haven't had a whole lot of people I've been genuinely attracted to but the ones I have, their body and their personality have both been a factor. Yet I haven't felt the need to insult someone because I wasn't attracted to them. I have just simply explained to them that the chemistry wasn't there, but I felt like we could be great friends since we have so much in common. Sometimes it has worked out just that way. Sometimes it hasn't and we ended up not talking again. But I sincerely hope that I have never made someone feel bad that I wasn't attracted to them, no matter the reason.
Anyway, due to the insulting behavior of men in the past couple of weeks, I've been facing something I haven't felt in a long time: shame. I feel ashamed of my body. I feel ashamed of being ashamed. I've been on the body positive, I'm a warrior for women who feel insecure about their bodies and are being made to feel that way by others, path for so long that I feel hollow to feel this way again. It's compounded by the depression of being sick, I understand that, but it doesn't help or hurt knowing that. Things that haven't always been this hard for me, because I haven't ever been this immobile by force and not choice, so it's been an even bigger struggle for me. Not only is my weight an issue for some people but it's an issue I absolutely can't fix anymore. And that is in on me and my body, but it shouldn't be commented on people who don't live my life or want to be a part of my life. My body is mine to deal with and their criticism isn't needed. I know this, but events like the past two weeks' worth of stuff makes it hard to keep that in line, to keep focusing on what I can do and not on what I can't.
Tuesday, September 27, 2016
Friday, September 9, 2016
Life, Changed.
It started with a twitch. My hand shaking on the gear shift of my car and stopping after a while. Shaking again, harder, and continuously to the point that I ended up at the emergency room. They tried Ativan. I passed out and still shook. They ran CT scans for damaged nerves, found none. They did physical after physical, consulting different doctors and sending me to different places. I was checked for everything from Lyme Disease to HIV. They found nothing. One doctor suggested it was psychological. I had to fight to be heard, that I wasn't doing this to myself and that I wasn't crazy. After blessing him out seven ways to Sunday, he finally got me in for an MRI. When he had said it was all in my head, he was right . . .except that it was literally in my head. There were spots of demyelination on my brain. I was damaged.
It's been seven months since that day. I have gone through one neurologist who's main concern was doping me up and not dealing with me. I literally talked to her nurse longer in one session than I talked to her combined. I have more symptoms and they're sure I have Multiple Sclerosis. It feels like a death sentence. I know, anyone reading this is going to say "well, I know someone with MS and they can do . . ." It isn't my job to educate others about my illness but I can say this-no one with it is the same. What one person is feeling, another may not experience it at all. For me, it's a raging fire going through my body, my right hand has a constant tremor, my legs shake after five minutes of walking around or a few minutes of standing-to the point that I have to sit down, my hearing is gone in my right ear, and I have no spasticity in my back for days at a time. I have memory and speech problems.
It has halted life for me as I know it. I went from working two jobs and going to school to there being days where getting out of bed is impossible. I'm on more medications to treat symptoms than most 90 year old people. My love for words has been so stilted that I'm reduced to stuttering and chicken-pecking on a keyboard with one hand. (This is . . .frustrating. I had beautiful handwriting, always knew the words I needed when I needed them, and typed 92 wpm.) I laughingly say I have Swiss-cheese-brain because my once identic memory is worse than amnesia patients at times. I have cried more in the past seven months than I have in the past 30 years.
Everyone says "stay positive". Everyone says "it will work out". No one says "we understand your pain." Because no one does. This disease has wrecked my life in so many ways. Not just physical but emotional too. I hurt internally all the time, and it sucks, but not being able to live life the way I was living-not feeling like I'm worth the effort that people have to put up with, the cancelled plans, the waiting on me because walking five steps makes my legs shake and my body hurt, the fact that I can't even enjoy being outside with my family because it literally hurts me. I feel useless and a bother to everyone. I know my family loves me and doesn't see me that way, but I can't help feeling that way myself. I went from someone who ran life at full speed to sitting on the side lines. Life is literally going on without me and that is the greatest pain I've ever really experienced.
I don't want to seem like all I'm doing is complaining. Sometimes the only way to survive is to break down and cry, to rant and get it all out. Unfortunately, when I rant out loud I now can't get the words together so . . .the hour to two hours it has taken me to tap this out has been my way of letting go. I don't know if anyone is going to read this or care and I'm pretty sure that I don't really care if anyone does. I just know I needed to put it out there, get it out of me, because sometimes the dark thoughts and depression gets to be too much. Sometimes I find myself wondering if living with this much pain is worth it. If I didn't have the people who I lean on, it probably wouldn't be.
I have a wonderful support system-four parents who fight for me and do everything they can to help me, brothers and sisters who make me laugh and love me no matter how horrible I am, and friends who are willing to put up with the extra things that goes along with me like medicine stupors and changed plans and who share their kiddos with me because kids are still the one thing that brings a smile to my face. I have a wonderful family doctor who listens to my concerns, helps me with paperwork, and keeps me accountable for myself. Since I'm waiting on a new neurologist, she is the only medical help I have at the moment and the only one who gets it-this is hard, this is painful, and staying positive is sometimes impossible.
Life is different, drastically so since this time last year. I understand so much more about things that were going on with my body that I didn't before-jerking limbs that I put down to general muscle spasms, forgetfulness that I brushed off as "everyone forgets something sometimes" (not with an identic memory. You don't forget. Your brain doesn't allow you to forget. Sometimes you really, really wish you could.), mood swings even on medication for mood swings, and this aching, burning feeling 24/7. None of it is random. None of it is something I can control. Its a rollercoaster ride that I can't get out of, but I'm taking it one twist and turn at a time. The only thing I can do is to hold my breath and wait for the next loop.
It's been seven months since that day. I have gone through one neurologist who's main concern was doping me up and not dealing with me. I literally talked to her nurse longer in one session than I talked to her combined. I have more symptoms and they're sure I have Multiple Sclerosis. It feels like a death sentence. I know, anyone reading this is going to say "well, I know someone with MS and they can do . . ." It isn't my job to educate others about my illness but I can say this-no one with it is the same. What one person is feeling, another may not experience it at all. For me, it's a raging fire going through my body, my right hand has a constant tremor, my legs shake after five minutes of walking around or a few minutes of standing-to the point that I have to sit down, my hearing is gone in my right ear, and I have no spasticity in my back for days at a time. I have memory and speech problems.
It has halted life for me as I know it. I went from working two jobs and going to school to there being days where getting out of bed is impossible. I'm on more medications to treat symptoms than most 90 year old people. My love for words has been so stilted that I'm reduced to stuttering and chicken-pecking on a keyboard with one hand. (This is . . .frustrating. I had beautiful handwriting, always knew the words I needed when I needed them, and typed 92 wpm.) I laughingly say I have Swiss-cheese-brain because my once identic memory is worse than amnesia patients at times. I have cried more in the past seven months than I have in the past 30 years.
Everyone says "stay positive". Everyone says "it will work out". No one says "we understand your pain." Because no one does. This disease has wrecked my life in so many ways. Not just physical but emotional too. I hurt internally all the time, and it sucks, but not being able to live life the way I was living-not feeling like I'm worth the effort that people have to put up with, the cancelled plans, the waiting on me because walking five steps makes my legs shake and my body hurt, the fact that I can't even enjoy being outside with my family because it literally hurts me. I feel useless and a bother to everyone. I know my family loves me and doesn't see me that way, but I can't help feeling that way myself. I went from someone who ran life at full speed to sitting on the side lines. Life is literally going on without me and that is the greatest pain I've ever really experienced.
I don't want to seem like all I'm doing is complaining. Sometimes the only way to survive is to break down and cry, to rant and get it all out. Unfortunately, when I rant out loud I now can't get the words together so . . .the hour to two hours it has taken me to tap this out has been my way of letting go. I don't know if anyone is going to read this or care and I'm pretty sure that I don't really care if anyone does. I just know I needed to put it out there, get it out of me, because sometimes the dark thoughts and depression gets to be too much. Sometimes I find myself wondering if living with this much pain is worth it. If I didn't have the people who I lean on, it probably wouldn't be.
I have a wonderful support system-four parents who fight for me and do everything they can to help me, brothers and sisters who make me laugh and love me no matter how horrible I am, and friends who are willing to put up with the extra things that goes along with me like medicine stupors and changed plans and who share their kiddos with me because kids are still the one thing that brings a smile to my face. I have a wonderful family doctor who listens to my concerns, helps me with paperwork, and keeps me accountable for myself. Since I'm waiting on a new neurologist, she is the only medical help I have at the moment and the only one who gets it-this is hard, this is painful, and staying positive is sometimes impossible.
Life is different, drastically so since this time last year. I understand so much more about things that were going on with my body that I didn't before-jerking limbs that I put down to general muscle spasms, forgetfulness that I brushed off as "everyone forgets something sometimes" (not with an identic memory. You don't forget. Your brain doesn't allow you to forget. Sometimes you really, really wish you could.), mood swings even on medication for mood swings, and this aching, burning feeling 24/7. None of it is random. None of it is something I can control. Its a rollercoaster ride that I can't get out of, but I'm taking it one twist and turn at a time. The only thing I can do is to hold my breath and wait for the next loop.
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