Tag Archives: chronic illness

Existential Boredom

I’m not as intensely suicidal anymore, but I really just don’t see the point of being alive.

Since the election, I have nothing to do with my time.  Literally all I do is sit in bed all day and waste time on my computer.  There is no point to my existence.

Nothing holds my attention.  I try to knit, to watch Netflix, to read, to write.  Nothing interests me.  I force myself to do it, but that doesn’t work for very long, and there are so many hours to fill.

And I hurt.  I don’t know what it is with the roving joint pains–one joint will hurt badly for weeks or sometimes months, and then for no reason that pain will stop.  Soon it starts back up in a different joint.  Right now it’s my left wrist again.  I have a brace from when I sprained my wrist doing kung fu, and it helps some…but it makes it hard to type or knit.  And my belly hurts.  I think I might be heading into another UC flare, which is awesome, especially since I might have to come off the 6-MP soon.  I’ve spent the last two weeks telling myself it was just PMS-related mini-flare symptoms, but since my period hasn’t happened, I don’t think I can blame PMS.  Oh, and it’s IBD Awareness Week, so clearly my body has impeccable timing and a fucked-up sense of humor.

I barely have an appetite, either.  I mean, I get hungry, but I don’t eat for hours because I just don’t care enough to get food.  C made me a gluten-free vegan cheesecake a week ago.  Ordinarily I’d have eaten the whole thing in about two days (no judging), but I’ve still got some left over.  I’ve got a big container of Thanksgiving leftovers, too.  They’re good, but I haven’t touched them.  Oh, and there’s also lentil soup C made.  It’s not even that I’m too tired/weak to prepare anything–literally all I’d have to do was take them out of the refrigerator and microwave them.  But I just don’t care enough.

I’d fooled myself into thinking the weakness was getting at least a little better, but it turns out I only thought it was better because I didn’t do anything beyond sitting in bed and getting up to use the bathroom.  Yesterday I cleaned my microwave.  It took all of five minutes, and that’s a generous estimate.  But then I couldn’t stand up, collapsed on the kitchen floor, and had to crawl back to my bed.  How am I supposed to have ANY quality of life when I can’t even stand for five minutes?  I’m terrified that whatever’s going on is getting worse.  I still haven’t had any luck reaching my gastroenterologist for a referral to a neurologist.  I might ask C to see if my ex-nurse, S, can make some calls.  Often medical professionals get a much better response than patients–sad but true.

I’m just so tired of existing like this.  There’s no light.  I don’t feel an immediate need to kill myself, but I can’t just keep living like this, either.  I want to feel like there’s some meaning, but I can’t see anything in this fog.

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Sick (of It)

I saw my gastroenterologist today.  I seriously love this guy–he’s the best doctor I’ve ever had.  He listens, he actually cares, and he works hard to find solutions.  I wish I could clone him for various specialties and just see clones of him with different specific knowledge sets.

(Admittedly, I also like him because he rants, so we’re kinda kindred souls there.  Today he ranted, without my even saying anything, about how poorly they treated me in the ER when I was there most recently, the debacle with the antibiotics that left me literally full of shit to the point of severe pain.)

He’s really concerned about the fatigue and weakness too.  I was afraid he was just going to blow me off since my labs all came back normal–god knows I’ve had plenty of doctors do that to me.  But he didn’t!  I cannot even describe the sense of relief there.  He didn’t just think I was a depressed hypochondriac!  I mean, that’s how all doctors should treat their patients, but sadly it’s very, very rare, especially if you have a history of mental illness.

In true House, M.D. fashion, he ruled out lupus and similar autoimmune diseases.  I made the joke, “Come on, Dr. House, it’s never lupus,” and he got it, so more gold stars in my book.  My sed rate and CRP (markers of inflammation) aren’t elevated, so it’s not likely to be another autoimmune disease, although he did say that it’s still possible we’re getting a false negative because I’m on immunosuppressants and steroids.

There are several possibilities he mentioned.  He seems to think there’s a strong chance that the 6-MP is causing this, but he’s not sure.  We lowered my dose the last time I saw him, 6 weeks ago, but I didn’t get any significant improvement.  But he mentioned possibly taking me off it altogether, which makes me nervous.  The combination of Humira and 6-MP is the only thing that’s gotten my UC under any sort of control, and I’m afraid I’ll get really sick again if I have to go off it.  To his credit, though, he totally understands that and is concerned about the same thing.

He also thinks it might be somehow related to my MTHFR polymorphism (aka the motherfucker gene).  For those of you who aren’t familiar with that, I have a genetic mutation that makes my body incapable of breaking down folic acid, which can cause problems from heart defects to depression.  My gastroenterologist was actually familiar with it because it also increases the risk of colon cancer, which is just awesome for me.  He said he’d need to do more research on that.  It’s still relatively unknown, and there’s not a lot out there from valid medical sources.

There’s also a small chance that this is somehow a result of my brain surgery, although that’s highly unlikely.  I was diagnosed with an arteriovenous malformation in the left frontal lobe of my brain when I was 17, after over a year of worsening neurological symptoms that got blown off because I was mentally ill and therefore assumed to be attention-seeking.  (See why I’m excited when doctors don’t blow me off?)  This is unlikely to be the problem since it was surgically corrected when I was 18, and my three-year angiogram (the definitive test for AVM’s) was clear.  There’s a very slim chance that the surgery could’ve left scarring or something, but the frontal lobes are mostly associated with executive function and language skills, not motor skills.  And since they only operated on the left side, any weakness would be on the opposite side of the body; i.e., my right side.  My weakness is bilateral.

The other possibility is something neurological, and since it’s not his area of expertise, my gastroenterologist couldn’t really speculate as to what.  So he’s sending me to a neurologist.  He’s going to talk to my primary care doc and see if they can find someone good for me.

GI Doc: “I want to find a neurologist for you who’s genuinely interested.”
Me: “By that, do you mean not an asshole?”
GI Doc: “Exactly.”

I know I should see this as a chance to maybe get some answers about what’s going on with my body, and maybe even treatment that’ll help.  But mostly I just don’t want to go.  All the tests, the pain the fear…and I’ll probably just find out I have something else incurable.  I just can’t deal with having anything else wrong with me.  I feel way too broken already.

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Hypersensitive?

I don’t know if I’m being hypersensitive or if my roommate is being a passive-aggressive asshole.  Or possibly some of both.

I know I tend to be overly sensitive, especially with people who’ve triggered my PTSD.  Once I’m in that state of heightened alert, everything seems like a potential threat.  I know I’ve been wound up more than usual since her screaming-on-the-phone-and-banging-around-for-hours thing a few days ago.  My anxiety’s been through the roof, and my depression has been worse than usual.

Then this morning I get this text: “Not to be a pain or anything cuz I’m sure your [sic] busy knitting or something but my older sister is stopping by tomorrow night for dinner so I’d appreciate it if there was some type of usable communal space on the counters or living area so that I can be able to cook and quite frankly I’m not going to make her eat in my bedroom.”

I’ll ignore the blatant abuse of the English language here, but this whole thing comes off as really snide to me.

For starters, half the crap on the counters is hers.  Yeah, I had some empty boxes and stuff, but that took all of about 30 seconds to get rid of.  I’ll wash the dishes I left out.  No big deal.  Meanwhile, has she cleaned up any of her stuff off the counter?  NOPE.  Has she even taken the trash or recycling out a single time?  NOPE.

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I told her from the get-go that I’m disabled and can’t always do a lot around the house.  I never made that any kind of secret.  In the three weeks she’s been living here, I’ve had three doctors’ appointments and an ER visit, so it’s not like she doesn’t know I’ve been sick.  The fatigue has been really bad the last few days, and I’ve barely managed to make it from my bed to the bathroom without passing out.  Doing anything more than that has been virtually impossible.  Still, I cleaned the bathroom last night, on my hands and knees, because it was gross, and I didn’t want her to have to live with it.

This morning, I tried to clean up more, but I had to sit my butt down on the kitchen floor because I was about to pass out.  And if you’ve ever tried to sweep or mop while using a cane, you’ll know that’s pretty much impossible.  So if she wants to floor clean, she can damn well do it herself.  As far as I can tell, she’s done no cleaning since she moved here.  Ordinarily, that’s not a huge deal to me as long as things don’t get gross.  But then she wants to act like it’s all me?

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(Yes, I think I am going to illustrate this whole post with Joe Biden gifs because of reasons.)

But I think what really got me was the line, “I’m sure you’re busy knitting or something.”  I don’t know how to read that as anything but bitchy and passive-aggressive.

biden_no

Again, this is a case of, “You knew from the get-go that I’m disabled.”  I never hid that.

Most of me wants to jump in with, “Nah, bitch, I’m organizing a third of the state for a fucking election in two weeks, much of which, yes, I do from home.  But that doesn’t mean it’s not fucking real or important.”

But the truth is I haven’t been doing much organizing the last couple weeks because I’ve been too sick and fatigued.  And you know what?  That’s fucking okay.  I don’t have to justify my goddamn existence with what I do.  I get that she has a regular nine-to-five job, and I don’t.  But that doesn’t make me any less of a person.  It doesn’t make me any less worthy of respect or compassion.  Just because I don’t get a paycheck the same way she does doesn’t mean that what I do isn’t also important.

biden_factsmatter

(I do have Biden gifs that aren’t from the 2012 VP debate, but that debate was just so glorious.)

But I have Chronic Nice Girl Syndrome, so I’ll go clean the whole kitchen and living room, do all the dishes, and pretend like none of this bothers me.  I’m so afraid of conflict that I’ll literally sacrifice my health to make Roommate happy.

But after this, I’m done.  She’s done no housework, so I’m not going to either.  Eventually she’ll get the point, or so I hope.  Just because she has a regular job and I don’t, that doesn’t make me automatically responsible for all the cleaning for an apartment we use equally.  If she’s not going to do any work, then I’m sure as hell not going to either, especially since it takes much more of a physical toll on me than it does on her.

biden_dealwithit

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Come On, Cosmopolitan

A friend of mine posted a Cosmopolitan article on her Facebook page.  It’s about measures of health other than weight.weight loss/BMI.  On the surface, that sounds promising.  God knows I’d love to see an end to weight shaming and the rhetoric of fat=unhealthy/skinny=healthy.

But when I clicked through, I was sorely disappointed.  Cosmopolitan seems to have traded in weight-shaming for ableism.

To be fair, the article is titled “Signs You’re Healthy,” and I’m not exactly healthy.  But the article uses the word “healthy” as a moniker for “acceptable” and “good enough.”  It subtly shames people who aren’t doing the things listed, the implication being that we’re not trying hard enough to be healthy, which is apparently something we owe to society.  God forbid we should become useless, disabled burdens on society.

Let’s look at Cosmo’s signs of “health,” shall we?

1. You eat more whole foods than processed foods.
Is diet-shaming really that much different than weight-shaming, really?  It still promotes the idea that certain foods are good or bad, and since you are what you eat, you’re bad if you eat bad food.

My UC has severely limited my diet.  I can’t eat anything containing dairy, gluten, or corn in any form.  I have to severely limit my fiber intake.  This means very few fresh fruits and vegetables.  It means more processed grains, like white bread and pasta.  My disease also causes severe fatigue, so cooking is usually not something I’m capable of.  I basically live off of one brand of frozen meals that are free from all the foods that make me sick.  If I followed the diet generally recommended as healthy, I would be in a constant UC flare, which could literally become life-threatening to me.

I’m far from the only one for whom the stereotypical healthy diet advice doesn’t work.  Diet is highly individual, and you can’t reliably judge someone’s level of health by snooping through their grocery cart.  I already get intrusive comments from grocery store clerks and baggers, so I don’t need any more diet-shaming from Cosmopolitan.

4. You move your body and call it exercise.
At this point, when I move my body, I just hope it supports me.  When I move my body, I pray it won’t collapse in the middle of the grocery store.  I beg my shaking muscles to hold me up for just a little longer.  I wish my aching joints would stop grinding bone against bone when I move.  I hope that I can make it from the bed to the bathroom without losing consciousness.  I hope that I will not lose control of my bowels and crap my pants again.

Two years ago, before I got sick, I exercised vigorously.  I ran about three miles four or five days a week, I practiced martial arts three days a week, and I walked almost everywhere I went.  According to this, I was very healthy–and yet I still got life-threateningly ill.  My immune system turned against me, and I nearly died.  Now my illness has taken away my ability to exercise, but that’s not because I made unhealthy choices.

6. You have some sort of connection to your community.
Boy, that would be nice, wouldn’t it?  I used to.  I used to connect with people through my martial arts school and political volunteer work.  But when I lost the ability to stand and walk reliably, I lost all of that.  No one stuck around; our society doesn’t teach us how to relate to and support people who are sick with no hope of getting better, so instead people just disappear from our lives.  Illness and disability isolate us

8. You can physically accomplish the things that are important to you.
Well, I guess I should just give up now, then.  I can’t stand for more than a few minutes, even with a cane.  Most days even taking a shower is more than I can manage.  Cooking is out of the question.  My muscles give out and leave me collapsed on the floor when I’m trying to grocery shop.  I see my doctors more often than I see my friends.  I have to make compromises every day because, while there are many things that are important to me, I have the energy to accomplish very few of them.  It’s a good day if I can get through all the things I need to do to take care of my basic physical needs.  Anything beyond that is a bonus.

9. You can manage your day-to-day life — or feel like you have the kind of help you need to get by.
So if I can’t manage some aspects of day-to-day life and the help I need isn’t available to me, is that my fault?  That is not an unhealthy choice, Cosmo.  That’s the reality of circumstances.  Because I’m chronically ill and disabled, I’m poor: people with disabilities are three to four times more likely to live in poverty, and the programs in place to address poverty are woefully inadequate.  Most poverty programs don’t take into consideration the special needs of people with disabilities.  Other community programs don’t either: for example, my town has made the bus system mostly inaccessible to me because most stops don’t have benches for me to sit down while I wait, and they eliminated the stop near my house.  I’m not physically capable of walking the mile to the next stop.  There’s no service to provide rides to the grocery store or the doctor’s office.  There’s no service to have someone come in and cook meals for me so I have healthy food when I’m too sick to cook for myself.  Even therapy to help me deal with the depression and hopelessness that come from all of this is inaccessible to me.  That’s not my fault.  I’ve learned that I cannot demand my body do more than it’s capable of or I will get even sicker.  I cannot push my body beyond its limits to try to access services that won’t adequately meet my needs anyway.  Ultimately, Cosmo, that is a healthy choice, if not the most ideal one.

10. You can find a way to feel awesome about how you spend your days.
I try, I really do.  But let’s set aside all the inspiration porn about people with disabilities: being disabled is frustrating, isolating, and depressing.  Positive thinking has its place, but there are some things it’s impossible to reframe to make me feel awesome.  When I wake up and find myself and my bed covered in poop because once again, I’ve leaked during the night, that’s not awesome.  When I spend all day in the ER because I’m in severe pain and one of my five hundred doctors thinks I might have a bowel obstruction, that’s not awesome.  When the meds I have to take to keep myself alive make my bone marrow stop producing red and white blood cells, that’s not awesome.  When I collapse in a parking lot because my muscles have just stopped working, that’s not awesome.  When I try to make my life meaningful by doing volunteer work, but the people I work with give up on me and forget about me because accommodating my disability is too much of a hassle, that’s not awesome.  When poverty and inaccessible public transit leave me effectively housebound and isolated, that’s not awesome.

I would love to feel awesome about how I spend my days, but honestly, I spend most days in bed and in the bathroom.  Occasionally days are spent in doctors’ offices or the ER.  There are certain advantages to a life spent in bed: my bed is really comfy, and I’m an expert at cheat codes for The Sims 3.  I have connected with some amazing, supportive people through my blog, and I value that.  But mostly, the way I spend my days is boring and lonely and depressing.  Add to that that a lot of society is committed to rhetoric that characterizes me as a worthless drain on society.  Then consider that the government, in its failure to sufficiently fund anti-poverty programs, is basically telling me that I don’t deserve to be able to meet basic needs like shelter, food, heating, and medical care.  For disabled people, society’s message is that you either have to be an inspiring super-achiever (think Oscar Pistorius or Stephen Hawking), or you’re a totally useless burden on society.  It’s pretty impossible to feel awesome about myself and what I do all day when I’m inundated by those messages.

So here’s a radical idea: let’s stop teaching people that their value as humans depends on their health, or whatever markers of it society is currently obsessed with.  Let’s stop implying that people are only unhealthy because they choose to be and that bad health is a moral failure.  Instead, let’s teach ourselves that we don’t have to earn the right to exist.  Let’s teach each other that we’re already good enough.  Let’s create a society that includes people with disabilities instead of shutting us out of our communities.  Let’s change our perspectives so that we can see and value the contributions all of us make to the world.  Let’s start valuing people as they are, not as we want them (or ourselves) to be.

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Ideology v. Survival

Today my psychiatrist told me I’m too sick not to eat meat on ethical grounds.

He’s a functional medicine guy, and I trust him about this stuff.  I’ve actually been thinking the same thing myself for the last few months, particularly with the anemia and the severe fatigue/weakness.  But I just can’t quite stomach the idea of eating meat again.

I’ve been vegetarian for more than ten years now.  For me, it’s an ethical and environmental issue, but even before I went vegetarian, I was never all that excited about meat.  It was never hard for me to give it up, and I’ve never missed it.  Now, the thought of intentionally putting meat in my mouth makes me feel queasy.  He wants me to start with bone broth, and that will be easier, I think–it should be easier because it’s not actual physical meat.  But I still have to buy bones and roast them and boil them.  Even that’s going to be hard for me.

My psychiatrist loves to tell illustrative stories.  The first one today was about a Russian Jewish soldier who was stationed in Siberia.  He wrote a letter to his rabbi to ask what he should eat because all they had was pork.  The rabbi’s answer was, “Eat the pork, but don’t suck on the bones.”

“The moral,” my psychiatrist said, “is you don’t have to enjoy it, but survival’s more important than doctrine.  We understand that.”  (I assume by the “we,” he was referring to himself as Jewish, but I got the odd impression that he might’ve thought I am too.  Not sure where he would get that from–I don’t think I’ve ever mentioned my own religious practices to him.  But whatever.)

Then he launched into a story about a former Karmapa (leader of a specific sect of Tibetan Buddhism).  Many Buddhists are vegetarian, but in Tibet that’s basically impossible.  So the Karmapa was traveling, and someone served him shrimp.  After dinner, they asked how he liked it.  He replied that he enjoyed the taste, but he was sad that so many living creatures had to die to make one meal  He said he preferred beef because one cow can feed a hundred people, so there’s less destruction of life.  “If I must eat meat,” he said, “I prefer beef.”

It was a strange conversation; my conversations with my psychiatrist usually are, but I like that.  But today, I had so much ambivalence it felt like I was being dragged in two different directions.  Not so much about food–about survival.  I don’t really want to survive…but on the other hand, since I’m still alive, I’d like to be slightly less miserable if possible.  So I bounce back and forth between feeling like it doesn’t matter since I’m going to be dead soon anyway and feeling like I might as well try because what else have I got to lose at this point?

So I’m just sitting in the middle, waiting.  I don’t even know what I’m waiting for.

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Collapse

So today I collapsed in the Walmart parking lot and proceeded to have a sobbing meltdown.  Apparently I’m one of THOSE Walmart people now.

I understand why it happened: I’m finally just getting over the sinus infection, I’m still dealing with the gut problems, and now I’ve got my period on top of that.  I could barely stand long enough to get from the bed to the bathroom, but this was the day C could take me grocery shopping.  I thought I could push through it.

Apparently I can’t.

I told her just to take me home, even though I hadn’t done any of my grocery shopping.  She offered to go into Whole Foods and buy my groceries for me, but I said no.  I just wanted to go home…but also I couldn’t come to terms with not being able to do such a basic thing for myself.  I mean, C’s not going to be around forever.  She’s not even supposed to be seeing me at all anymore, but we just mutually don’t mention that.

And next week I get to hear my gastroenterologist blow off my fatigue and weakness because my labs look fine.  I really like him for most stuff, but I feel like he just isn’t taking this seriously.  I mean, at my last appointment, I told him I have trouble standing up for more than 60 seconds, and he told me to reduce my dosage of iron.  I know I’m probably reading too much into it, but I keep thinking he thinks I’m just being histrionic because I have a psych history.  I really like him most of the time, but I don’t know how to make him understand how bad this is.

Maybe I just need to collapse in his office and start sobbing on the floor.  Too bad I can’t do that at will.

My RN friend is going with me to the appointment, though, so maybe she’ll be able to help get the point across.  Of course, then he’ll probably just send me to some other specialist, and that’ll take weeks to get an appointment, and then they’ll do tests, which will take more weeks, and meanwhile my level of functioning will continue to decrease.

Oh, and for added fun, it’s going to be yet another month before I can get my Nexplanon implant, too.  It has to be done during the first five days of your period.  I called today when my period started, but apparently their supplier screwed up.  They don’t have any implants, and the nurse couldn’t tell me when they’d be getting more.  And my NP wasn’t working today, so I have to wait for her to call me back tomorrow and find out what the hell we’re doing about that.  Or I may just beg her to do a hysterectomy if the pain doesn’t let up.

Could something, ANYTHING, please go right for me?

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I did a stupid thing

Saturday night, I overdosed.  And here it is Tuesday morning, and I’m still barely able to function.  I can’t spell basic words without a lot of thought, and I nearly pass out when I get up to go to the bathroom.

I’m not sure if I wanted to kill myself or not.  I was at least half-dissociated, so I don’t even know how many pills I took.  (Or, for that matter, which one[s] of us took them.)

I think I wanted either to die or to make someone notice that something is very very wrong.  But I ended up not accomplishing either of those things.  So I feel like a failure in every possible way.

I feel like I NEED someone to take care of me.  To hug me and tell me it’s all going to be okay, to listen when I’m freaking out, to take care of all the everyday things like bills and food that overwhelm me.  I want to go back to a residential program like Sheppard Pratt, but I can’t afford it.  I have maybe three weeks left of my lifetime inpatient days still left.  I can’t use those up now–what if I need them more later?  Besides, Sheppard Pratt always has a waiting list, and I need help now.

Everything about real life is just too overwhelming.  Most of it, at this point, comes down to money, and I feel greedy for saying that.  Money can’t buy happiness, but the lack of it sure can fuck you up.  If I had a car, my life would be so much easier.  I could get to appointments, to the grocery store.  Hell, I might even be able to have a little bit of a social life.  But even if someone gave me a car for free, I wouldn’t be able to pay for insurance, gas, maintenance.

And if I had more money, I could get more psychological support.  I wouldn’t be stuck with these useless people from DMH.  I would even be able to travel if I found one who’s good but not on public transit lines.

And I just wouldn’t have to worry all the time about everything.  Right now, all it would take for my whole life to blow up in my face is for one little thing to go wrong.  Just one thing, and I’ll be sleeping under a bridge in winter.  One little thing, and I won’t be able to pay for the meds that keep me alive.  This is the reality of my life.  More money wouldn’t cure the underlying emotional injuries, but it would make them a hell of a lot easier to deal with.

But that money, that help, that support–none of it is going to come.  How do I keep dealing with the utter hopelessness of that?  My compulsion is to berate myself, to tell myself, “You don’t need any of that.  You’re just a pathetic attention-whore who wants everybody to pay attention to her all the time.  You don’t deserve to have needs.”  And with that comes the impulse to starve myself again.  It would be so much easier, and it dulls all the feelings.  And it seems easier than staring at the black hole in the center of myself and knowing that no one will fill it.  I mean, when my own government tells me I don’t deserve enough money to be able to meet my basic needs, who am I to argue?

And on top of the money issues, there’s the chronic illness.  It’s never going to get better.  It will continue to control my life for as long as I’m alive.  I’ll have to keep taking toxic medications that make me almost as sick as the UC does, albeit in different ways.  I’ll always be in pain.  I’ll always be so weak I have to use a cane to walk and still can hardly manage even with it.  I’ll always have to control my diet so strictly I’ve given up on eating out.  I’ll never not be sick.  In fact, I’ll probably just get sicker.  There is no relief, no remission.

And this is where I’m stuck, all day, every day.  I’ve done all the things they’ve told me will make me better, and none of it is working anymore.  So I have to choose between living like this for another 60 years or killing myself.  I want to feel like there’s some reason to live, but right now the pain is so bad nothing matters except how to make it stop.

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I Don’t Matter

I feel like an asshole every time I say I don’t matter.  People keep telling them I matter to them, and I don’t want to ignore that.

But it feels like it only matters if I matter to people who have the power and money to make my life survivable.  It feels like they’re the ultimate judges on whether I deserve to exist.  Clearly, their verdict is that I don’t, so it feels like it doesn’t matter that I matter to anyone else.

I hate myself for thinking that way, for being that person.  Because it means I’m essentially telling everyone else that they don’t matter.  Emotionally, that’s not how I feel at all, but that’s the logical conclusion to what I’m saying.  And I hate that because it makes me a collaborator.  I’m affirming a system that tells you that you don’t matter unless you have money or power.  Even though in my mind it only applies to me–everyone else in my situation absolutely deserves to exist and to have their needs met–I’m still buying into a fucked-up system.

But I don’t know how to believe I matter when I can’t make ends meet.  If someone matters to you, you take care of them.  You make sure they have a place to live and food to eat and warmth when it’s cold.  That’s how you treat someone that matters.  But my government, a system I’ve worked my ass off to improve, obviously doesn’t think I deserve those things.  Because I’m sick, because I’m disabled, because I’m poor, because I can’t contribute to the economy, I don’t matter.  They don’t come right out and say they want everybody like me to die, but what other conclusion can you draw when the government won’t give you enough help to meet even your most basic needs?  There’s a reason suicide rates are much higher among people living in poverty.  We’re stuck in an endless cycle of deprivation and need, and then we’re blamed for our own circumstances.  There’s no hope, never an end in sight.

So when people tell me I matter, I want to believe them, I really do.  But it seems impossible when I’m staring straight at evidence to the contrary.

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Fuck It

Today I was supposed to have an appointment with the new case manager.  She never showed up.  I thought she was better than the old one, but apparently not.

I’d worked myself up to asking for more help.  I was going to tell her that I’m not sleeping and I’m severely depressed.  I was going to ask for therapy.  But then she didn’t bother to show up or call or anything, so fuck it.  I’m done trying.  I’m done looking for help.  I’m done trying to squeeze water from stones.

I’ll just stop even trying to get better.  I’ve tried and tried and tried, but I cannot do it without decent support.  So fuck it all.  I’ll just stay in my apartment, sleep all day, and binge and purge all night.  Clearly the people who could help don’t believe I’m worth saving, so why should I keep trying so hard?  I’m not important.  Eventually I’ll die–my heart will stop because of electrolyte imbalances, I’ll have a GI bleed, or my intestine will perforate.  A few people will be sad for a while, but overall the world won’t be any worse off when I’m dead.  I’m not contributing anything to society, so my absence won’t leave any big holes.  Just one less welfare queen.  Just one less pathetic loser who can’t function.  No big loss.  All I do is take money and resources that someone better than me could put to better use, someone who might actually do something useful with their life.  Spend that money on someone who matters, someone who can actually be saved.

Because I won’t be saved.  I could be, but apparently I don’t matter enough.  So for fuck’s sake, at least save someone.

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I have a roommate, finally.  That’s [mostly] settled, so that’s a relief.  I don’t have to freak out about how I’m going to pay the full rent next month, or about being homeless.

And I have plans for Thanksgiving week.  I’m taking a trip to New Jersey to stay with a good friend and her family.  That should be pretty awesome.

And both my candidates won their primaries, so now we’re working on a Democratic coordinated campaign.  I’ve never worked a coordinated campaign before, so it should be interesting.  I imagine our campaign will be at the forefront, since she’s the gubernatorial candidate, although our Democratic Senate candidate, who was uncontested in the primaries, has been running what he calls a coordinated campaign for months now.  I’m not entirely clear on how it’s a coordinated campaign before you had other candidates to coordinate with, but whatevs.  So maybe they’ll be in charge.  I’m a little unclear about how the power structure works now, but I guess I’ll find out.

I should feel happy about all these things, and somewhere I do.  But mostly I just feel exhausted and listless and uninterested.

I’m still sick–this damn cold will not go away.  The antibiotics improved things a little, but I’m still coughing and waking up because I can’t breathe at night, and this damn sinus headache won’t go away.  I should probably schedule an appointment with my primary care doc, but just the thought of getting there is exhausting.  Two buses, and no benches, and at least a half-mile walk.

I’m also just sick of doctors.  I feel like they’re not helping me.  Even my wonderful gastroenterologist doesn’t seem to think the fatigue is a serious problem.  I haven’t even scheduled another appointment with him, not since before I went on my trip.  UC-wise, things are stable.  Not great, but manageable, which is apparently as good as it gets for me.  Knowing how much his office staff messes up scheduling, I should probably at least make an appointment–it wouldn’t be for three months anyway.  But I just don’t want to, and I’m not sure why.

I didn’t go back to the OB-GYN, either.  I was supposed to call when my period started so I could get the Nexplanon implant, but it was during Get Out the Vote, and I was sick, and I didn’t have a way to get there.  At least that’s why I tell myself I didn’t call for an appointment, but I don’t think that’s really why.  I’m not really sure what it’s about, this avoidance of doctors thing.  I’m scared something else is wrong with me.  I’m scared of finding out for sure, but I’m also scared I won’t be taken seriously.  After all, I’m just crazy.  It’s probably just somatic, or I’m attention-seeking, or something.

Or maybe it’s passive self-destruction.  I’m not cutting or starving or purging anymore, so I do something much more subtle. I don’t know.  I just know that right now everything hurts, physically and emotionally, and I’m tired of taking care of myself.  I feel like I don’t have the energy to do it anymore.

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