Tag Archives: fatigue

existential exhaustion

Last night, I dreamed that I was at work on Election Day, and my bosses kept giving me more and more stuff to do, and I just couldn’t keep up with all of it.  A lot of it was stuff I’d never done and didn’t know how to do, and no one would teach me how or help me at all.  Then we lost the election, and they were all angry at me and said it was all my fault.  Then I had to walk home.  It was cold, and I kept falling down because my legs wouldn’t work.  I had to crawl part of the way.  When I finally got home, the power was out, and somebody from the power company was yelling at me for being useless and not paying my bills.

I mean, I also dreamed that I signed Mary Poppins up for a canvass shift, so clearly my brain is kind of nuts.

But the first dream…it’s pretty clear what that’s about.  No need for interpretation there.  It’s how I feel about myself: I’m a failure at everything, my life is falling apart, everybody either already hates me or is going to hate me when they find out what a fuck-up I am, and even my body won’t do what I need it to.  I’m going to be left alone in the dark and the cold because I’m an unlovable failure.

I’m just so tired of fighting so hard and never getting anywhere.  I’m just so tired of everything.  I don’t want to do it anymore.

4 Comments

Filed under Uncategorized

Scattered Thoughts

  • I’m not sleeping again.  The past week it’s been pretty bad.  I just don’t feel like there’s any point in trying to fix it.  I’m used to sleep deprivation by now, and I can deal with it.  I’d rather just deal with it than go back on meds that leave me foggy all day long.
  • Don’t pick a chauvinist fight with me on the internet at 2:00 am.  I get pretty punchy.  And if you’re dumb enough to provoke a fight by being a sexist asshole, then don’t think you’re going to win by insulting me and trying to shut me up.  It’s not going to work, and you’ll look like an idiot because I can dance rhetorical circles around you.  And I will laugh about it the whole fucking time.  Especially at your pathetic insults and attempts at intimidation.  I work in politics, and I talk to people much, much scarier than you, Princess Poop-for-Brains.  You’re gonna have to really step it up if you want to scare me.
  • I went to a meet & greet with our Lieutenant Governor candidate and several state senators and representatives.  I went with a friend who lives in the same ward as I do, and the city councilor from our ward was there.  He came over and said hi, and he said, “You’re the only normal people here.”  Um, thanks?  I don’t often get called normal.  Ten minutes later he called me a unicorn, after I said I was one of those rare voters who is persuaded by facts and hard data rather than abstractions and fuzzy-wuzzy feelings about a candidate.  (We’ll leave my huge Platonic crush on Joe Biden out of this.)  So apparently I’m a normal unicorn.
  • My gastroenterologist’s office called and said my labs all came back normal.  Uh, then why can I still not stand up for more than two minutes?  I just want a definitive answer about what the hell is going on with my body.  Even if it can’t be treated, even if it’s going to get worse, I want to know.  If I know what’s going on and what I can expect in the future, then I can accept it.  But how can you accept something when you don’t know what it even is?  How can I make plans and learn how to deal with it if I don’t know what’s happening?  It’s just so frustrating.
  • My new case manager is somewhat better than the last one, but she never asks how I’m feeling or how I’m coping.  I can’t find it in me to bring up on my own how much I’m struggling, and I can’t ask for more help on my own.  But if she would just ask, then I could tell her.  But she doesn’t, so I can’t.  I hate how powerless that makes me sound.  Hell, I hate how powerless it makes me feel.  But for now, that’s the reality of the situation.

7 Comments

Filed under Uncategorized

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?

6 Comments

Filed under Uncategorized

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.

7 Comments

Filed under Uncategorized

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?

5 Comments

Filed under Uncategorized

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.

14 Comments

Filed under Uncategorized

Disjointed and Disconnected

I feel like I haven’t had much to say lately, so I haven’t been posting. But it’s lonely. I’m lonely. I keep wanting to reach out and connect, but I don’t know how. I don’t know what I want/need or how to ask for it.

So here’s a bunch of random stuff about my life that might make me feel a little more connected, even though it’s going to come out all disjointed.

  • I still don’t have a therapist.  I’ve come to the conclusion that I probably should, but I’m too afraid to look for one.  Afraid I won’t find someone, afraid it won’t work out if I do find someone, afraid they’ll reject me (again).  So my brilliant approach is to do nothing about it.
  • I am exhausted, existentially.  After the Boston trip last week, I haven’t done any campaign work all week.  Didn’t even answer my phone for campaign people.  I feel a little guilty, but mostly I just don’t care.
  • I think some of the apathy is the Supreme Court’s fault.  I’ll spare you my political ranting, but suffice it to say that I’m very unhappy with them.  It feels like no matter how hard we work to make the country more fair and kind, it just doesn’t matter.  Someone with more power will just stomp it into dust.  Right now I’m too tired to fight back.
  • I am doing a table for my AG candidate at the farmers’ market on Saturday.  But I plan to just sit there, smile at people, and hand out lit.  I’m too tired to be aggressive about it, and if they don’t like it, they can dock my pay.
  • I still don’t know what I’m going to do about my roommate situation.  I should be advertising on Craigslist and talking to friends who might know somebody, but I haven’t done anything at all.  I feel like my roommates are screwing me over, so it should be their job to fix the situation.  Of course, that’ll just end up screwing me over in the end.  I know this, but does it motivate me to do anything?  Nope.
  • The fatigue is slightly better since I’ve been on the iron, but it’s still very present.  My gastroenterologist’s office called to say my blood counts looked better in this week’s labs, and I’ll see my doctor this Tuesday.  I’m going to discuss with him whether it’s the iron sulfate that’s making me sicker, the lower 6-MP, or both.  The worst, of course, is night.  I don’t know why, but it’s always been that way for me.
  • I have an OB/GYN appointment July 11.  I’m freaking the fuck out about this.  C is going with me, but that does not actually make me feel better.  I’m afraid she’ll refuse to give me progesterone without an exam, and then I’ll be totally fucked.
  • It poured all night tonight–I’m talking hurricane quantities.  This makes me nervous because I live 50 yards from a lake, in a first-floor apartment, but we didn’t flood.  Our power flickered a bunch, but it didn’t go out.  In spite of this, I hope it pours again tomorrow night.  That way every asshole with a lighter won’t be setting off firecrackers.  I don’t do well with sudden, loud noises.  It’s all right if I go to a fireworks show because then I expect it.  But on the 4th of July, even though it’s illegal, people just LOVE setting off fireworks.  Maybe if I beat them up, I can blame it on my PTSD.
  • I also need to get around to installing my window unit tomorrow because it’s too damn hot to exist.  Of course, I’ve been saying all week that I was going to install it tomorrow.  Apparently I’m so apathetic about everything that not even heat stroke can motivate me to get out of my bed.
  • I really hate this new WordPress post layout.  I don’t usually complain about website updates unless it’s Votebuilder (don’t start me on THAT rant), but this one bugs me.  It feel like it’s trying to be too Facebook-y, and the interface is less intuitive than it used to be.

I don’t really feel more connected, but maybe it’s a work in progress?  I don’t even know anymore.

 

26 Comments

Filed under Uncategorized

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.

Image

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.

5 Comments

Filed under Uncategorized

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.

4 Comments

June 27, 2014 · 9:51 pm

Just a Little Easier

Another sleepless night.  All I can do is sleep when I want to be up and doing things, but at night…nope.

I’m scared and alone.  I can’t stop thinking about the future and how I’m ever going to manage like this for any length of time.  I’m barely scratching out my survival every month, and it’s just not sustainable.  Pretty soon (the end of June) I’ll lose C for good, and unless I magically find a therapist, I’ll have no one left to rely on except Idiot Case Manager.  (I think I’m just gonna call her ICM from now on.  It’s easier.)

I feel like there’s something seriously physically wrong with me.  I mean, besides just the UC.  My energy levels are non-existant.  No matter how much water I drink, I still nearly pass out every time I stand up.  Sunday, I couldn’t get through an hour and a half of canvassing before I thought I was literally going to collapse.  I barely made it back to the car.  I’m sure this is somehow related to the UC–before my diagnosis, I was walking and running around 5 miles a day and doing intense martial arts training for around 6 hours a week.  I wasn’t an olympian, but I was in good shape.  Now I can hardly stand up.  Seriously, I had to buy a cane, and I STILL couldn’t finish my canvass.  All the tests come back normal (or as normal as they can be for someone with UC): iron levels, B vitamins, Vitamin D, thyroid–all normal.  My doctors just shrug it off: “Fatigue is pretty common with autoimmune diseases.”  But I see all these other IBD patients who run marathons or do martial arts or, you know, can be on their feet without collapsing.  I’ve spent a lot of time since my diagnosis talking to other people with IBD, and I’ve never heard of anyone else with this level of fatigue and weakness.  I don’t know if it’s the disease or the meds.  I kind of suspect it’s the 6-MP–I don’t recall fatigue like this before I went on it, and it’s gotten worse since the doctor on call upped my dose a few weeks ago.

I feel like I need someone who can look at this integratively.  I love my gastroenterologist, but he seems uncomfortable with addressing anything that isn’t directly related to my intestines.  My GP is also good, but when my tests came back normal, that was pretty much the end of it for him.  I can’t afford to pay out of pocket for any kind of holistic doctor, so I’m basically just shit outta luck.

I just wonder how I’m ever going to be able to function like this.  I was working part-time on the campaign, and now I’m barely able to do even that.  Most days I don’t leave my bed, although I do manage to spend a few hours sitting up.  I’ve got a stack of canvass packets two inches thick that I haven’t entered because I’m too fatigued to concentrate enough.  It’s not even difficult, just detail-oriented, making sure I enter the right data for the right person.  I could do it in bed, but I’m struggling even with that.

Once I lose C, I don’t even know how I’ll grocery shop.  Right now, that’s what she and I do on our shifts.  To grocery shop on my own, I’d have to take two buses each way and wait at stops with no benches, which right now is basically impossible.  ICM has made it clear, when I asked about help getting to the grocery store, that they “don’t do that.”  I’ve yet to determine what she actually does, other than make sure I’m still alive once a week and make comments that make me want to punch her.

I feel like I’m being left all alone in a world too big for me to manage, and no one even notices, let alone cares.

It’s just like when I was a kid.  My mother used to disappear sporadically.  It was always after one of her rages, and a lot of the time she’d threaten suicide before she disappeared.  She was never gone more than two or three days, and sometimes it was just for several hours or overnight.  But it started when I was 8 years old, and I had two little sisters to take care of.  I was never sure if she was going to come back, but I did the best I could to take care of my sisters.  We ate a lot of cereal, peanut butter and jelly sandwiches, and macaroni and cheese from a box, since those were the only meals I could make.  I learned not to think ahead because then I’d panic about what would happen to us if my mother didn’t come back.

It was the same way when my father was abusing me: just deal with this moment, and don’t think about the future or you will fall apart.  It was always about mere survival.  I couldn’t imagine things being any different because I was so small and he was so big, and no one even noticed what he was doing to me.

And now it feels like that same situation is playing out again.  I need help and compassion and care, but what I get is neglect or abuse.  I can’t think about the future because the hopelessness is too overwhelming.  There’s nowhere to turn.  No one will save me.  There’s no rescuer coming.  I am alone.

Yes, there’s something to be said for not expecting someone to magically save you or fix you, but I don’t think that’s what I’m doing.  At least, I’m trying to convince myself that’s not what I’m doing.  I’m willing to work as hard as I can to get better.  I’ve tried so hard for so long.  I don’t expect some idealized savior to come make everything better.  There’s this scene from The West Wing where two White House staffers are talking to a guy in a hotel bar, and the guy’s talking about the struggle to afford college for his daughter:

It should be hard.  I like that it’s hard.  Putting your daughter through college, that’s–that’s a man’s job.  A man’s accomplishment.  But it should be a little easier.  Just a little easier.  ‘Cause that difference is…everything.

That’s how I feel.  I don’t want my life to be easy–I would get way too bored.  I’m one of those people who loves to fight, which is why I’m so good at politics.  I’m willing to keep fighting for my life–that’s a real accomplishment.  But it should be a little easier.  Just a little easier.  ‘Cause that difference is the difference between “I think I can manage this” and “My life is so impossible that I have no viable choices besides killing myself.”  ‘Cause that difference is everything.

13 Comments

Filed under Uncategorized