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.

It’s not that we don’t try.

I read a blog post today written by a therapist.  I’ve been following this blog for a while, and mostly it’s decent.  But today, I just want to throw things.

This therapist is talking about how people with mental illness give up on treatment.  Apparently, according to this guy, 80% of people with depression get better after a year of therapy, but we just give up and won’t put in the effort.  He says, “Most mental health issues, for example, can be much better managed with a modicum of effort. Most people still do not put in the time.”

I don’t even know where to start with this.

First of all, where is this 80% statistic coming from?  He doesn’t cite any sources, and I don’t know if I believe it.  I know too many people who struggle with unremitting or recurring depression despite years of therapy, myself included.  I know my anecdotal experiences don’t disprove statistics, but I’m not just blindly going to accept numbers thrown around on the internet without any sources cited.

Second, how are we defining “getting better” in this statistic?  Are we using the HRSD?  BDI?  CES-D?  Goldberg?  Wakefield?  What score indicates “better”?  And over what interval of time?  For instance, counting someone as “better” 3 months after a depressive episode might be accurate then, but if they later relapse, are they still counted in the 80%?

Third, define “good counseling.”  Every single therapist I’ve ever seen claimed to be good, but some of them weren’t.  Some of them were probably good therapists for other people, but they weren’t good therapists for meSo when I terminated therapy with them, was I giving up and refusing to put in the effort?  Was I being one of those patients?  What about the therapists who have fired me?  Who said I was too difficult, too sick, too complex?  I guess I should’ve been a better patient so they wouldn’t have given up on me.

It’s bullshit, blaming people for not being able to do therapy.  There are a million reasons why someone couldn’t.  I, for instance, am mobility-impaired, don’t have a car, and can’t access public transit easily.  I cannot easily get to a therapist’s office.  I also can’t have a therapist whose office requires me to climb more than a few stairs, which is a major barrier in the area where I live.  This is not because I’m not willing to put in the effort.  I’ve pushed myself to the brink of physical collapse to try to get therapy, but my body just can’t handle it anymore.  It’s not okay to blame me for not getting better.

I have a Deaf friend who lives in a small town.  She can’t find a therapist who is fluent in ASL, so how is she supposed to access therapy?  That’s not for lack of trying either.

Or my friend who’s working two jobs.  She can’t just take off work from her low-wage jobs to go to therapy when the therapists are working.  She works from 6:00 in the morning until 10:00 or 11:00 at night.  She wants therapy, but there’s no one near her who can accommodate her schedule.  She doesn’t get sick time, and it she asks for time off regularly, she could easily be fired.  That’s not because she’s too lazy to put in the effort in therapy.

And what about the people who do get therapy, lots of therapy, for years, who work their asses off to heal…but don’t get better?  Yes, we’re statistically a minority, but we exist.  And to say that most people with mental illnesses won’t put in the “modicum of effort” to manage their symptoms is misleading and hurtful.  Most people don’t want to suffer.  We don’t want to be miserable and alone.  Most of us are doing the best we damn well can, and most of the time we’re doing it with far too few resources and far too little support.

It’s easy to sit in the therapist chair and judge us for what you perceive to be a lack of effort.  It’s easy to say, “Why won’t you just _____?”  And I think it’s especially easy to judge of you’ve recovered–you think if you can get better, why can’t/won’t everybody else?  But it’s not that simple.  Your illness is not everyone else’s illness; your pain is not everyone else’s pain; and your solutions are not everyone else’s solutions.  You may not see progress, but that doesn’t mean we’re not trying.

Suicide Prevention Day

To be perfectly honest, I dread and resent this day.  I know that’s a very unpopular opinion, but I’m not sorry.  I just can’t embrace it and write a tearjerker post about my close calls with suicide and how glad I am that I didn’t succeed.

I’m not glad I didn’t succeed.  I’m not actively suicidal right now, but my life is difficult and painful every day.  If any one of my suicide attempts had succeeded, I wouldn’t have to drag myself through that every day.  I wouldn’t have to worry about whether I can find a doctor who will give me medication to manage my chronic pain.  I wouldn’t have to worry about becoming homeless because my disability check isn’t enough for anyone to survive on.  I wouldn’t have to worry about how to get therapy when no one thinks I need help.  I wouldn’t have to worry about how I’m going to get to the grocery store now that there’s no bus accessible to me.  I wouldn’t have to worry about whether I’m going to crap my pants in public.  I wouldn’t have to worry about how I’m going to afford heat this winter.  I wouldn’t have to worry about any of it.

My problem with Suicide Prevention Day–and suicide prevention in general–is that it focuses only on keeping you alive.  Call this hotline, go to the ER, spend a week or two in the hospital, take your antidepressants.  Be grateful you’re alive because otherwise you’re a bad, selfish person for being unable to tolerate any more of your own pain to spare others from being hurt.

It never focuses on making your life survivable.  It doesn’t help you get therapy when you’ve been told you don’t matter enough to get help.  It doesn’t provide you with a support system to help you when none of the antidepressants help.  It doesn’t make sure you have enough money to meet your basic needs.  It doesn’t give you dignity or a sense of purpose.

It just keeps you alive, and way too often, the method employed is guilt.  “How could you do that to your family/friends?”  “Think of what it would do to _____ if you killed yourself.”  “If you kill yourself, other people might think it’s a good solution to their problems, too.”  And if you’re not grateful to be alive, not contrite about ever having wanted to kill yourself, you’re shamed as a bad patient.  You’re told you need to try harder or be more willing.  No matter how hard you’ve already tried, it’s not good enough.

Then you’re left with a whole mess of guilt and shame on top of the overwhelming circumstances you were already dealing with.  And you’re isolated–it’s dangerous to tell anyone how you really feel–so you hide or you lie.  You grow more and more alone, more and more hopeless.

Keeping people alive is not enough.

VICTORY!

Both of my candidates won tonight!

The media kept saying there would be low turnout and widespread apathy among voters, but my gubernatorial candidate’s campaign knocked on doors and called more than 100,000 voters in the last three days to remind them to get out and vote. That’s not apathy.

Hell, I spent the morning at urgent care with a fever of 101 and a raging sinus infection, but I convinced the PA I saw to go vote for my candidate during her lunch break. I might feel like I’m dying, but I got a vote in person and then went and made hours of phone calls. That’s not apathy.

As soon as her acceptance speech is over, I’m gonna take some antibiotics and some NyQuil and get some well-deserved sleep.

Hitting a Wall

This is what happens when I try to go full speed ahead: a surprise wall pops up, and I run into it full speed ahead.

I’m exhausted, mentally and physically.  My body hurts.  I want to cry.  I want to sleep, to crawl under the covers and not come out.  Oh, and for added fun, I’m sick.  Again.  Three days after I got over the last bug.  Everybody on this goddamn campaign is sick, so naturally I get it twice.

But I have a full day of campaign work today, and an even fuller day tomorrow because that’s the primary.  And there’s a post-voting party in Boston, which I’ll go to if there’s anyone coming back to my area that night to drop me off at home.

Then, because I’m a huge idiot, I have a bunch of crap going on Wednesday, too.  I’m showing the apartment to someone at 7:30 a.m. (whyyyyy did I agree to that?), seeing my new case manager at 10:00, meeting an old friend from high school at 12:30, and showing the apartment again at 4:30 and 6:00.

But all I can think about at this point is, “I can kill myself Wednesday night.  I can kill myself Wednesday night.”  Over and over and over.

Probably most of this is just from being overwhelmed and sleep-deprived.  Some of it’s probably hormones.  But I’m having a really hard time keeping the suicidal impulses at bay.  Even though I know the way I’m feeling is probably temporary, I just want all of it to be over.  The crappy feelings are temporary, but they always come back, and they’re here more than they’re gone.  I’m so tired of dragging myself through my life, just barely getting through.  I’m existentially exhausted, and I don’t want to do it anymore.  I think it’s unfair that people keep expecting me to.  Haven’t I done enough?  Haven’t I suffered enough?  Can’t I please just rest now?

Comparing Disabilities

I’m so tired of people comparing and ranking different types of disabilities.

Particularly, I’m frustrated that people with psychiatric disabilities keep saying that it’s worse for them because they can’t talk about it, whereas people with physical disabilities can.

I get that there’s a lot of stigma against mental illness.  I live that every day.  There’s a reason I don’t tell anyone at work I have a mental illness: I’m afraid that if I’m ever well enough to get a job, that will get in the way of my being hired.

But I live the other side of the coin every day too.  I have severe ulcerative colitis.  Do you think it’s socially accepted for me to talk about how I was up all night shitting blood?  I think it would probably be more acceptable to say I was hopelessly depressed. 

Because of severe fatigue and weakness, I often have to use a cane if I’m going to be on my feet for more than 30 seconds.  Do you think people don’t judge me for that?  Strangers ask, “What’s wrong with you?”  I get asked if I’m contagious.  I get told I don’t look sick.  I get told I’m too young to be that sick.  I get told I should just stay at home if everyday things are so hard for me.  A LOT of things aren’t accessible to me, from public transportation to jobs, because I can’t stand for very long, even with the cane.  And when you start talking about accessibility, people roll their eyes and act like I’m being an entitled brat.

Not everyone, of course.  Some people are lovely.  But overall, people don’t care.  They’re not willing to go a little out of their way to accommodate someone with a physical disability, either.  So please, for the love of god, stop saying that people with physical disabilities don’t also face stigma and discrimination.  Let’s stop playing the “Whose Life Sucks More?” game.  It’s not productive, and it just leaves everyone feeling worse afterward.

overwhelmed by exhaustion

I don’t know how to cope with this exhaustion anymore.

I slept 11 hours last night, and right now I can barely sit up.  My body won’t sleep anymore, but it’s not functioning, either.  I’m supposed to be doing a predictive dialer phone bank tonight, but I think I’m going to have to cancel.  I mean, my hands are so weak I’m having trouble typing.  I’m having to wear my wrist brace again because the latest joint pain is my left wrist.  The brace drives me crazy, but it’s the only thing that keeps my wrist from hurting every time I move my arms.

Something is wrong with me, and no one is taking it seriously.  My gastroenterologist, who’s otherwise awesome, just blows it off as a symptom of the UC.  I know some fatigue is normal, but not like this.  I mean, I’m not flaring, so there’s no UC-related reason I should be this fatigued and weak.

I should probably go back to my primary care doc, but how would I even get there?  It’s now a two-mile walk on a road with no shoulder to get to the bus stop, then two buses.  I can’t physically handle that.

I’m going to look into the paratransit buses that pick you up and drop you off at your door, but without a diagnosis, I’m not even sure I’ll qualify.  I don’t have a doctor to write a letter saying I’m too sick to use regular public transit because I can’t even get to a doctor in the first place.  Plus, the paratransit service is 2-3 times as expensive as the regular buses, and you have to go to an in-person interview at a place half an hour away.  How the fuck do you think I’m going to get there if I don’t get paratransit?

I just can’t deal with this right now.  Everything just feels so overwhelming, and I want to just go back to bed.  But I have to find a new roommate.