Monthly Archives: June 2014

Left Out

The event today went well.  We had several hundred supporters, great weather, and lots of energy and enthusiasm.  I managed pretty well with the fatigue, but since it was outside in the hot sun, that was a pretty big drain on my energy.  Luckily they did have seats available for people with disabilities–otherwise I wouldn’t have been able to manage.

Afterward, we (mostly staff, plus a couple interns and volunteers) went to lunch at this place called Dick’s Last Stand.  It’s pretty hilarious–the servers get to be jerks (not mean jerks, just sarcastic and funny), and they make everyone these hats with rude things on them.  The field director put a social media ban on posting pictures of most of them.  For instance, one guy’s hat said, “I blow bubbles,” and the hat of the guy next to him said, “I’m bubbles.”  There were also gems like “I pee on my balls” and “I mate with innocent animals.”  But mine wasn’t terribly offensive, so I got to tweet mine.

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Then, when we were on the way back to HQ, the candidate called to say thank you, which was pretty awesome.  She tried to call me once before, several months ago, but I didn’t pick up because it was an unfamiliar number and I was stuck on the toilet.  I think it’s classy to call the volunteers who put in a lot of time and effort.  Obviously you’re not going to call everybody who shows up for a canvass or two, but I’ve been doing a lot.  Basically, I’m a part-time regional field organizer without the title or the paycheck.

But now I’m exhausted.  That and my hormones mean my moods are all over the place.  For the most part, I enjoyed the rally, but I also felt really left out most of the time because I had to sit most of the time.  I wanted to be doing something, helping, but there was really nothing to do from a chair.  I got left out of conversations because everyone else was standing up, so they stopped noticing I was there.  I was literally below them.

Don’t get me wrong; I don’t think any of it is at all intentional.  I really like the people I’m working with on this campaign, and I don’t think anyone means to leave me out.  I think it just doesn’t occur to them to make an effort to include me, and I don’t feel confident enough to push for it.  So I end up sitting on a bench alone for two hours because when I ask what I can do, nobody knows what to say.  I’m the only visibly disabled person working on the campaign, so I think the staff haven’t really needed to find ways of including me.  Most of the time I’m in western Mass, so I’m kind of invisible.

It just leaves me feeling so lonely and useless and invisible.  Even though the rally itself was good, I found myself wanting to cry and/or disappear for most of the time.  I still really feel like disappearing and crying, but I’m trying to remind myself that a lot of how I’m feeling is a combination of hormones and exhaustion.  Still, it’s really hard, and I start to get upset about how much I’ve lost–not just the loss of physical abilities, but the loss of inclusion.  Sometimes it even feels like I’ve lost my personhood.

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So the usual Thursday trip to HQ in Boston became a 4-day trip at around 11:00 on Wednesday night.  There’s a big event in Boston on Saturday and another event in Worcester on Sunday, so RFD and FO decided it made more sense to stay in Boston.  RFD and FO are staying with FO’s sister, and I’m staying with one of the Boston-area RFD’s.

It’s been challenging so far because I’m not feeling physically well.  I’m not sure if reducing the 6-MP dose is making me sicker or if it’s the iron supplements irritating my GI system.  Either way, it’s not a lot of fun.  I just hope no one has noticed how often I have to run off to the bathroom.  For added fun, there’s only one stall in the women’s restroom, but we have 30-40 people at HQ, plus several other offices/businesses on the same floor.  Maybe I just need to tape my restroom access card to my forehead….

The iron doesn’t seem to be improving the fatigue and weakness, but maybe it’s still too soon to tell.  I have repeat labs on Monday and an appointment with my gastroenterologist on Tuesday, so we’ll see what the labs say and what the doc recommends.  Part of me would love to go off the 6-MP because it makes me so sick, but I’m also worried that the UC will get worse again if I have to go off it.  Trying to manage the UC and the UC meds seems like such a crapshoot, and I’m so tired of it.

Right now I’m just tired of everything.  I’m tired of being sick all the time, I’m tired of pain, I’m tired of spending so much time in doctors’ offices, I’m tired of barely being able to stand up, I’m tired of the stares and questions when I use my cane, I’m tired of being isolated, I’m tired of being limited, I’m tired of being strong, I’m tired of surviving.

I just feel so alone with all of it.

And I feel like I shouldn’t be saying any of this, that it’s too negative and nobody wants to hear it.  But I’ll hit the “Publish Post” button because maybe then I’ll at least feel less alone.

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June 27, 2014 · 9:51 pm

The normality trap

This is brilliant. I totally agree.

Mind Hacks

I remember taking a bus to London Bridge when, after a few stops, a woman got on who seemed to move with a subtle but twitchy disregard for her surroundings. She found herself a seat among the Saturday shoppers and divided her time between looking out the window and responding to invisible companions, occasionally shouting at her unseen persecutors.

By East Street, the bus was empty.

You’ve probably encountered fellow travellers who are strikingly out of the ordinary, sometimes quite distressed, scattered among the urban landscape where they seem to have a social forcefield around them that makes crowds part in their presence.

If you’ve ever worked in a hospital or support service for people with psychological or neurological difficulties, you’ve probably met lots of people who are markedly out of step with the mundane rules of social engagement.

They seem to talk too loud, or too fast, or too…

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I’m alive.

I’m doing a bit better this morning, thank god.

I did wind up calling C last night because it was either that or I was going to start cutting, so I figured calling her was the wiser course of action.  She even said she doesn’t mind at all when I call because she knows how isolated I am and how little support I have.  It was one of those things that I knew rationally, but I needed someone else to say it out loud so I knew I wasn’t making it up.  She managed to calm me down some, which really helped.  She’s good at that.  Sometimes I just need a voice of reason who’s outside my head.  I can usually be pretty rational; I like numbers and statistics and data more than the average person, apparently.  But when I go crazy, even though that ability to think rationally is still there, it just doesn’t help.  The crazy is too much stronger.  C wasn’t saying anything I hadn’t already said to myself, but I needed to hear it anyway.  I don’t know exactly why it works that way, but whatever.  At least I know what I need in those situations, even though it’s weird.

I realized while I was on the phone with C last night that probably a major component of my crazy right now is hormones.  I don’t think I’ve talked about it much before here, but I have bad PMDD.  Some months it’s not so bad, but some months it’s pretty horrific.  I used to take birth control, which helped, and then I switched to straight progesterone when the birth control stopped helping as much.  But now my insurance won’t let my psychiatrist write that prescription for me anymore.  I tried to get it from my primary care doctor, but he wouldn’t do it–I think he was nervous about the other meds I’m on and the UC.  Ex-Nurse is trying to get me an appointment with a trauma-sensitive OB/GYN, but that’s proving to be kind of difficult.

So for the time being, Ex-Nurse got Psychiatrist to write her a prescription for progesterone, and she’s going to fill it and give it to me.  (Psychiatrist knows this is the plan and has approved it.  He’s cool like that.)  Technically it’s insurance fraud, but I don’t think either of us feels bad about it.  We’re just trying to do what’s necessary to control a dangerous disease.  I don’t have a problem with breaking the rules if it doesn’t hurt anyone, and this is one of those cases.  It’s a relief I’ll be able to get it until I can see an OB/GYN and get a legitimate prescription.

I’m pretty exhausted today, and my whole body hurts after the bicycle debacle.  It feels like I did an intense workout, but I didn’t.  (I wish I still could!  I miss my martial arts training!)  I see Idiot Case Manager in an hour…bleh.  She called today, AGAIN, and totally blew off the not getting my voicemails issue.  I’m not telling her about my meltdown last night or my housing issue–I’m not giving her any excuses to hospitalize me or put me in a group home.  I’ll just tell her I’ve been really sick, which is true.  I really don’t want to deal with her at all, but I don’t feel like I have much of a choice.

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I’m feeling pretty unbearably awful tonight.  I want to cut or purge…just something, anything to make the feelings go away.  I feel like I’m going to explode, and I want to die.  I mean, not really, you know, but I just right now don’t want to be alive.  This is the point at which I should probably call somebody for help and support, but who?  C isn’t really my team leader anymore, so I shouldn’t bother her when she’s no longer getting paid to deal with my drama.  Idiot Case Manager is utterly useless and apparently never checks her messages in the office anyway.  I don’t have a therapist anymore because I fired her and then she fired me.  I don’t have friends anymore.  There is literally no one left and I’m all alone and I just can’t do this anymore, any of it.  I just want somebody to give me a hug and help me figure all this out.  But there’s no one, and that’s probably all my fault.

I just can’t do this.  I’m not strong enough.  I try but I can’t anymore.  I’m just not good enough at life.  I want to just give up and never get out of bed again, just be comatose forever or until things are okay again, which feel like the same thing.

Sorry.  I’m sorry.

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June 24, 2014 · 12:08 am

Feeling Crippled

Today’s been a rough day.

I needed to get into town to pick up the iron supplements my gastroenterologist prescribed last week.  I thought I was feeling well enough to do it.  Because it’s summer, the bus that goes past my street only runs every 2 hours, so I thought I’d try riding my bike into town.  It’s only two miles, mostly flat, so I didn’t think it would be a big deal.

Yeah, I was wrong.

By halfway there, I felt like I might die right there on the road, but it was a busy street with nowhere safe to pull off and rest, so I made myself keep going.  Then, as I was riding into the center of downtown, I started to have an asthma attack.  My leg muscles just quit working, and my bike and I fell over in the middle of an intersection.  It took me more than a minute just to be able to get up, and somebody had to help me get my bike up and onto the sidewalk.  Luckily I was wearing pretty thick jeans, so I didn’t tear up my leg except for part of my ankle, but my knee and the side of my leg are pretty bruised up.

I feel so useless.  A year and a half ago, I was walking/running around 5 miles a day, and I was doing intense martial arts training three nights a week.  I was strong and in good shape, and I knew my body could do pretty much whatever I wanted it to.  I had the arthritis and pain in my lower back and hip to deal with, but it didn’t limit me much.  Now I can barely do anything more demanding than sitting in bed.  Occasionally I can walk a little, but I have to use a cane, and it takes me days to recover afterward.

Right now, I feel like I can’t live like this anymore.  I feel completely cut off from everything I need, and I feel like I’m completely alone in dealing with this.  I mean, people try to be kind and helpful, but it usually doesn’t go beyond holding doors open for me and such.  Apparently I need a personal chauffeur so that I can do normal things like go to the pharmacy and buy groceries.

And there’s not even anyone I can talk to about all of this.  I don’t have friends anymore, not in real life.  I have friendly acquaintances on the campaigns, but we interact almost entirely around campaign stuff, not personal issues.  And I don’t think I’d tell them how hard things are anyway because I want them to see me as competent and capable, not crippled and deserving of pity.  But it’s so, so lonely and painful.  I feel like crying, but I’m fighting it because I think it would just make me feel worse.

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Why I Blame Myself

I can’t sleep.  I’m too busy freaking out about the roommate situation.  I’m afraid I’m going to end up in another bad roommate situation.  (I’ve had several of those, including one who didn’t wear clothes and didn’t pay her half of the rent.)  I’m afraid having to get a new roommate I don’t know will exacerbate my PTSD to unbearable levels.  I’m afraid that I won’t be able to find anyone else and won’t be able to pay the whole rent by myself, so then I’ll end up homeless again.  (Long story I don’t feel up to explaining right now.)

And somehow I feel like this is all my fault.  Like if I’d just planned ahead, I would’ve somehow solved this problem before it arose.  Like if I could just get ahold of my crazy PTSD shit, I wouldn’t have to freak out about living with people I don’t know.  Like if I’d just stop being so goddamn lazy and get a job already, I could afford the apartment on my own and wouldn’t have to worry about all this shit.

It’s illogical, I know that.

But I’ve always blamed myself for everything bad that happens.  I mean, Christ, when someone rear-ended me at a red light one time, I apologized to the guy!  I blame myself for my psychological distress, my isolation, my lack of support.  I blame myself for the UC and arthritis and fatigue.  I blame myself for my poverty.  I blame myself for all the abuse I’ve suffered.

It’s fucked up, but I think it’s comforting, in a way.  It’s easier to believe that all the bad things that happen to me happen because I deserve them than to believe they happen for no reason, because the universe is unfair and people are cruel and uncaring.

There’s this line from my favorite TV show:

“You know, I used to think it was awful that life was so unfair. Then I thought, wouldn’t it be much worse if life were fair, and all the terrible things that happen to us come because we actually deserve them? So, now I take great comfort in the general hostility and unfairness of the universe.”

–Marcus Cole, Babylon 5

I wish I could believe that.  I do, for everyone but myself.  But when I’m talking about myself, I’m not there yet.  I still believe it’s all my fault.  It somehow seems less painful, but probably it really isn’t.  I wish I knew how to let go of that.

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Crap.

I’m so screwed.

My roommates just told me they’re almost certainly moving out in two months.  They have a legitimate reason–a mother with cancer who doesn’t have anybody else to take care of her–but it’s going to screw me over.  I can’t afford this place on my own.

It took us months to find this place to begin with.  My disability isn’t really enough to live on–around $700 a month.  One bedrooms around here go for $800-$1000.  This place is $800, but I’m pretty sure my landlady is renting it to us for less than market value.  I’ve been on the list for public housing and rent vouchers for almost a year now, but it’s around a five-year waiting list.  I can’t rely on that coming through any time soon.

So I have to find another roommate/s.  Words cannot describe how much I don’t want to deal with that.  I’m not very good with people, especially in my space–it doesn’t feel safe.  (PTSD stuff.)  Part of the reason I get along well with my current roommates is we’re all kind of hermit-ish.  We mostly stay in our own rooms and don’t see each other very often.

The other problem is going to be that it’s a really small apartment.  It’s really only supposed to be a one-bedroom, but we turned the eat-in kitchen into a cramped living room and turned the living room into a second bedroom.  So people who can afford something better probably aren’t going to want to live somewhere so cramped.  It’s also kind of out of town, and the public transit system sucks.  It’s all right if you have a car, but someone who doesn’t have a car might not want to live here.

But I have to find somebody else.  I can’t afford to live by myself, as much as I wish I could.  It’s  stressing me out a LOT.  I just want to go to bed and not deal with it at all, but I can’t do that.

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Lab Results

I finally heard back from my gastroenterologist’s office this afternoon–while I’m at headquarters in Boston, of course.  Apparently I’m anemic, and my white blood cell count is pretty low.  That could explain a lot of the fatigue and weakness symptoms I’ve been having.  My doc’s putting me on iron.  I’d been on it before, but he took me off it because my levels were fine and he was afraid it was messing with my digestive system.  But I’m guessing with the bleeding I’ve been having, especially without the iron supplements, made me anemic again.

The WBC count is more worrying.  It’s almost certainly because of the 6-MP.  I have a love/hate relationship with this drug–it’s caused me all kinds of icky side effects, but it’s also given me more control of the UC than any other drug.  And now I may have to go off it.  He’s not going to take me off it just yet; he wants to get repeat labs in two weeks and go from there.  I wasn’t having as many problems on 75 mg–it wasn’t until it got upped to 100 mg that I got really ill–so we’re both hoping that means going back down will solve the problem.  But if it’s caused bone marrow toxicity, I may have to go off it totally.

I’m SO FRUSTRATED.  The only drug that’s kept my immune system from ripping holes in my intestines might now be killing my bone marrow.  If I go off it, I’ll probably get sicker with the UC, but obviously killing my bone marrow isn’t an acceptable scenario either.  All I want is a drug that controls my illness without killing me.  WHYYYYYY does that have to be so far out of reach?

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Disconnect

I’m realizing that I spend a lot of time these days feeling disconnected.

I interact with people a lot, primary through my political work.  It’s great; I love it.  But I only get to be part of me in that context.  It’s a part of me that I like–capable, confident, smart, quick learner, good with people.  I feel valuable and wanted.  I even feel like people like me.  I’d like to be that person all the time–it feels good.

But it’s not all of who I am, and neglecting the other parts of me isn’t going to do us any good in the long run.

There’s also part of me who’s sick and scared.  My hair is falling out.  I can’t stand up for more than a minute before my legs start to shake and give out on me.  Half of my right big toe is numb, and the last two days, I’ve had tingling and numbness from my left elbow down to my pinkie and ring fingers.  I get headaches I can’t shake for days.  I have bruises all over my body even though I haven’t bumped into anything.  My belly hurts almost constantly.  I’m still waiting to hear back from my gastroenterologist about the recent labs, but I’m starting to think this is something more than just the ulcerative colitis.  It scares the shit out of me.

And there’s the depression that’s always there, niggling at me.  I can only push it away for so long.  Anxiety, too.  I just keep worrying that something is going to blow up in my face that I can’t handle, and everything will fall apart.  I can push away the fear and depression for a while, but it never really disappears.

And I can feel young parts close to the surface.  I always know when they’re nearby because I start to crave care, someone to take care of me because I’m scared and alone and I can’t do it myself.  But I have to.  I’m an adult, and there’s no one to take care of me now.  I don’t even have a community anymore, not since I had to leave the treatment program I was in.  I still see my team leader twice a month, but most of the time, I’m on my own.  Idiot Case Manager thinks I’m doing great, not that I believe I’d get any substantial help from her even if she didn’t think I was doing great.  I get the sense that aside from drugs and hospitals, they don’t have much to offer.

And what is it I really want people to offer, anyway?  What is it that you think would actually help?

I want to feel not alone.  I want a community where I can be all of me.  I keep thinking about going back to the trauma unit just to be surrounded by people who get it, but that doesn’t really fit.  I’m not in crisis; I don’t need to be monitored and locked up; I need to have my freedom and ability to do my work.  But I also need to feel held, and I don’t, here.  There’s no one around me who understands what I’ve been through.  I don’t even have a therapist anymore.  Partly that’s my own fault, I know.  I could look for another one, but I don’t.  I probably won’t.  Or, well, I’ll search and search, I’ll find them online and read their profiles, but I’ll never pick up the phone and call.  I’m too afraid.

I’ve built up my own walls, and I have no idea how to get out of them.  I’m alone and afraid, and it hurts so much right now.

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