(no subject)
I wrote a huge long post, and felt there were too many words about how depressed I am and how much life likes to suck really hard when it wants to, but it all came down to how absolutely impossible it is to work with IBS.
Today I had a really bad flare up. I was sick all day and didn't want to move. I work as a labourer, so you can imagine how well this went. I'm still sick. And I'm exhausted from trying to work while at the same time managing the horrific cramps.
I tried to talk to my mom about it; about how I clearly need a new line of work. She didn't brush me off, exactly, but she just went quiet and wouldn't say anything or comment on anything I was trying to talk to her about, so I gave up. I was trying to discuss the possibility of me switching jobs, because I don't have much of a choice... and I just got the feeling that she was entirely disapproving of the subject. Like, shut up about your problems, Jami, suck it up and go to work.
I just want someone to goddamn understand how hard it is, how what I have is a legit physical disability. People claim benefits for this shit. I'm thinking about it because I might actually have to. And no, it's not as hard as other disabilities, that's for damn sure, and I'm sure there are people out there who do have it harder than me. But I want everyone to stop telling me their "quick-fixes" as if they have any idea what I'm going through.
No, diet and exercise won't help. A spastic colon is not caused by either of those things (in fact, exercise makes it worse because of the stress on the body. Go figure.) No, it's not as easy as having a flare up and then going back to work all fine and dandy. After a flare up I feel like crap. The cramps go away and then my body just wants to give up on me, like I'd done two hours of hard exercise and dehydrated the crap out of myself. Yes, I usually appear fine. Because I'm hiding it, goddammit, it's embarrassing. No one wants to phone in and say, "Yup, I'm having an IBS flare up, I can't leave the washroom..."
Yes, there are days when I'm one hundred percent. Where, for a little while, I can believe I'm a happy, healthy, normal person. And then, about once a week (at least), I get a flare up that makes me want to crawl into a corner and die. Sometimes it happens more. Sometimes less. Because I can't predict when it's going to happen, I can't control it in any way at all.
And no, there's no treatment or cure. IBS is a psychological disorder that has severe physical repercussions. They don't really even know why it happens, so they can't determine how to stop it. They only have a vague idea of stuff that helps. My doctor suggested the diet and exercise one. I didn't tell him that exercise makes me sick. Or that my diet is pretty frigging impeccable since I started getting sick.
I feel like I'm being told in subtle ways over and over that I'm just being lazy. It's the exact same feeling from when I was struggling with anxiety and depression and they were out and out telling me I was being lazy. But nobody believes me because I have anxiety and depression and PCOS and IBS and it's like, nobody can ever have more than one disability, you're just lying for attention. Yes, I admit, I do want attention. Because I want someone to solve my goddamn problems, I want someone to help me through it, because right now I feel like I'm fighting this battle alone. I feel like my own mother isn't taking me seriously about this.
And the only help I get from other sources is the aforementioned, "Oh, just change your diet, add this supplement, you'll be one hundred percent better!" Ok, but if that doesn't work what do I do? What do I do for the next few months, even if there is some sort of miracle cure I don't know about? How do I keep a job when I have to call in every couple of days because I can't pull myself from the bathroom? How do I pay my bills when I can't go to said job?
Or if I do "suck it up" and go to work, what then? I spent so much time sneaking off to the bathroom, trying to go unnoticed, because it's horrible and embarrassing. And how do I explain that I can't lift that, not because it's heavy, but because it will make me sick? What do I do when a bathroom isn't readily available or for some reason I'm in a position I can't go right away? (Trick question - I know what I do. I suffer silently through the intense pain and pray to whatever God there might be that what I'm doing will be over soon.) What happens when I get a flare up so painful that I puke? Or I get so nauseous I can't stand up anymore? How does that make me useful to anyone?
I just want this to be over and it never will be.
So in the meantime all I can do is wish and pray that I'll qualify for some sort of disability and that I can find a nice, safe, quiet job that somehow pays the bills (because let's face it, most safe, quiet jobs don't pay well.)
And yeah, okay, I want someone to hold my hand and take me through all the steps and help me get these things because the idea of doing it right now by myself makes me so anxious and nervous that... Oh look, an IBS flare up.
Just... fuck.
Today I had a really bad flare up. I was sick all day and didn't want to move. I work as a labourer, so you can imagine how well this went. I'm still sick. And I'm exhausted from trying to work while at the same time managing the horrific cramps.
I tried to talk to my mom about it; about how I clearly need a new line of work. She didn't brush me off, exactly, but she just went quiet and wouldn't say anything or comment on anything I was trying to talk to her about, so I gave up. I was trying to discuss the possibility of me switching jobs, because I don't have much of a choice... and I just got the feeling that she was entirely disapproving of the subject. Like, shut up about your problems, Jami, suck it up and go to work.
I just want someone to goddamn understand how hard it is, how what I have is a legit physical disability. People claim benefits for this shit. I'm thinking about it because I might actually have to. And no, it's not as hard as other disabilities, that's for damn sure, and I'm sure there are people out there who do have it harder than me. But I want everyone to stop telling me their "quick-fixes" as if they have any idea what I'm going through.
No, diet and exercise won't help. A spastic colon is not caused by either of those things (in fact, exercise makes it worse because of the stress on the body. Go figure.) No, it's not as easy as having a flare up and then going back to work all fine and dandy. After a flare up I feel like crap. The cramps go away and then my body just wants to give up on me, like I'd done two hours of hard exercise and dehydrated the crap out of myself. Yes, I usually appear fine. Because I'm hiding it, goddammit, it's embarrassing. No one wants to phone in and say, "Yup, I'm having an IBS flare up, I can't leave the washroom..."
Yes, there are days when I'm one hundred percent. Where, for a little while, I can believe I'm a happy, healthy, normal person. And then, about once a week (at least), I get a flare up that makes me want to crawl into a corner and die. Sometimes it happens more. Sometimes less. Because I can't predict when it's going to happen, I can't control it in any way at all.
And no, there's no treatment or cure. IBS is a psychological disorder that has severe physical repercussions. They don't really even know why it happens, so they can't determine how to stop it. They only have a vague idea of stuff that helps. My doctor suggested the diet and exercise one. I didn't tell him that exercise makes me sick. Or that my diet is pretty frigging impeccable since I started getting sick.
I feel like I'm being told in subtle ways over and over that I'm just being lazy. It's the exact same feeling from when I was struggling with anxiety and depression and they were out and out telling me I was being lazy. But nobody believes me because I have anxiety and depression and PCOS and IBS and it's like, nobody can ever have more than one disability, you're just lying for attention. Yes, I admit, I do want attention. Because I want someone to solve my goddamn problems, I want someone to help me through it, because right now I feel like I'm fighting this battle alone. I feel like my own mother isn't taking me seriously about this.
And the only help I get from other sources is the aforementioned, "Oh, just change your diet, add this supplement, you'll be one hundred percent better!" Ok, but if that doesn't work what do I do? What do I do for the next few months, even if there is some sort of miracle cure I don't know about? How do I keep a job when I have to call in every couple of days because I can't pull myself from the bathroom? How do I pay my bills when I can't go to said job?
Or if I do "suck it up" and go to work, what then? I spent so much time sneaking off to the bathroom, trying to go unnoticed, because it's horrible and embarrassing. And how do I explain that I can't lift that, not because it's heavy, but because it will make me sick? What do I do when a bathroom isn't readily available or for some reason I'm in a position I can't go right away? (Trick question - I know what I do. I suffer silently through the intense pain and pray to whatever God there might be that what I'm doing will be over soon.) What happens when I get a flare up so painful that I puke? Or I get so nauseous I can't stand up anymore? How does that make me useful to anyone?
I just want this to be over and it never will be.
So in the meantime all I can do is wish and pray that I'll qualify for some sort of disability and that I can find a nice, safe, quiet job that somehow pays the bills (because let's face it, most safe, quiet jobs don't pay well.)
And yeah, okay, I want someone to hold my hand and take me through all the steps and help me get these things because the idea of doing it right now by myself makes me so anxious and nervous that... Oh look, an IBS flare up.
Just... fuck.