Tag Archives: chronic pain

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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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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Limited

Today, I’m frustrated beyond belief by my limitations.  I feel like I just can’t do anything.

As a kid, I wasn’t just told I could do anything I wanted, I was expected to do everything.  It wasn’t an empowering sort of thing–it was dysfunctional, though I probably couldn’t have named it as such then.  I don’t think that it ever occurred to me that I could refuse to do everything.  I look back at high school and don’t know how I did it.  I was doing an MFA-level creative writing program at the #4 high school in the country, I was the leader of the church youth group, I volunteered every week at a Teen Court program, I volunteered at a science museum, I volunteered with Special Olympics, I taught creative writing to a second-grade class, I babysat, and I worked three nights a week at a fast food restaurant.  I honestly don’t know when I slept.

Now, I feel like I can’t do anything, and it makes me feel worthless.  I bought my family’s approval–what I thought then was love–by always trying to be good enough.  It was never good enough, of course, no matter how much I did.  Now that I can’t do most things, I feel like I’m even less worthy of approval or love.

And it frustrates me because I know I’m capable of much more than my body lets me do.  I got an email earlier this week from a major political campaign, inviting me to apply for a field organizer position.  I wanted SO BADLY to send them my resume, and I’m pretty sure I would’ve gotten the job.  I would’ve been awesome at that job, and I would’ve loved it.  Plus, they would’ve actually paid me!  Maybe I’m still an idealistic teenager, but I think it’s pretty fucking awesome to get paid to do something you love.

But my body can’t handle it.  Just walking four blocks today was painful.  There are days I can’t be more than a few yards from the bathroom because I can’t tell if I’m going to fart or crap my pants.  Some days I can’t function without narcotic painkillers, but they made me so stupid I can’t accomplish much.  Some days, I don’t have the energy or the blood pressure to stand up long enough to boil pasta.  I would kick ass at a field organizer position, but I no longer have the stamina to kick ass.

And that pisses me off.

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I Don’t Want Your Miracle Cure

I’ve been having a debate on Facebook with someone about giving out unsolicited medical advice to people dealing with chronic illnesses.  This person says that sick people should be grateful for it because it’s a sign that people care about you.

I disagree.  Strongly.  I didn’t say most of this to her because, well, it was someone else’s Facebook post, and I wanted to limit how badly I hijacked it.  But here’s what I want to say.

 

I understand it’s hard for you to watch someone you care about suffering, and I understand that you want to make it all better.  That’s a natural human instinct that arises from empathy.  I’ve been on both sides of this, and I know it’s hard on everybody.

But leave medical advice to medical professionals.  Medicine is complex.  There’s a reason doctors spend years in school and more years being supervised by experienced doctors.  If you know someone with a chronic illness, they probably have a doctor already.  Lots of us even have lots of doctors.  They probably know what they’re doing, since they actually went to medical school.  They’re probably doing everything they can to help us manage our health.  Giving us medical advice assumes that you know better than our doctors.

Giving us medical advice assumes that we’re not already doing everything we can to manage our health.  You probably don’t know what lifestyle changes we’ve made or what medications we’re taking or what our latest lab work looks like.  The miracle diet that cured your best friend’s aunt might contain foods that trigger my illness.  I might not have the physical stamina to adhere to your exercise regimen.  Giving us medical advice assumes you know our bodies better than we do.

And often, if we don’t follow your expert medical advice, we’re sent down Guilt Trip Avenue.  I know you probably don’t mean for that to happen, but you should know that it almost inevitably does happen.  If we don’t follow your advice, you often imply–or say outright–that we’re just not trying hard enough.  You tell us we have a bad attitude, and if we’d just think positively and give it a chance, we’d feel better.  When you’re living with a chronic illness, feeling better is not a matter of willpower or effort.  Positive thinking has its place, but we also need to be allowed and even encouraged to express emotions like frustration, fear, hopelessness, and anger.

We don’t owe it to you to be grateful for your unsolicited advice.  We shouldn’t have to adjust to dealing with advice we don’t want, to forcing a smile and a thank you to make you feel better for “helping” us.  Having a chronic illness forces us to adjust almost every aspect of our lives.  I think it’s reasonable to ask the people who care about us to adjust how they relate to us a little too.

There are many other ways to let us know you care.  Ask us how we’re doing and just listen without trying to fix us.  Bring us a doughnut or a book you think we’ll like or some flowers.  Send us a card to let us know you’re thinking of us.  Ask if there are practical things you can help with, like rides or housecleaning.  Take us to see a funny movie.  I’m sure you can think of other ways to show you care.

If I see you dealing with an illness in a way that inspires me, I might ask you for pointers.  In that case, advise away!  Aside from that, if you are not my doctor, please don’t tell me how to manage my illness.  Instead, support me as I manage it.

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Canceling

We want to cancel therapy.  Permanently.

I mean, she doesn’t want to hear about us.  Just Hope.  When she tries to bring it up, A says stuff like, “Everyone has parts.”  Well, sure, but not like us, okay?  It’s not the same thing.  At all.  So quit blowing us off.

And she doesn’t get what it’s like for us with other stuff either.  Like the bus trip to see her.  Since we don’t have a team anymore, we don’t have rides anymore.  It takes four buses and three hours each way, and by the end of it we’re in so much pain we can’t function for days after that.  And she’s like, “We can occasionally do a phone session if you can’t make it.”  OCCASIONALLY?  Try EVER, lady.  She knows we’re dealing with chronic pain and chronic illness, but she doesn’t GET it.  I mean, she made Hope say she’d go out every day even though she knew how hard it is for us to get anywhere, and if we went back she’d probably be mad cause we didn’t even leave the house.  But whatever.

It’s not like we’re actually getting anywhere or anything.  We don’t even talk about anything that matters most of the time.  So what’s the point of spending 6 hours getting there and back home and causing ourself more pain?  There’s no point in that.

She’ll disappear eventually anyway, just like everybody else.  That’s what always happens.  People don’t stick around I guess cause we’re difficult or something, I don’t know.  So this time we’re gonna disappear before she does.  Just call and cancel the next appointment and then just never go back.  I just hope she doesn’t actually answer the phone cause if she does, then she’ll get us to come back and we’ll feel guilty and then we’ll be stuck going even though there’s no point.

I know everybody’s gonna tell me it’s stupid to stop going or say just find a different therapist.  I tried, believe me.  We spent 6 months trying to find somebody and had really bad experiences with 3 different therapists.  One even sent us to the ER when we dissociated even though she’d SAID she’d dealt with people like us before.  Everybody near us who deals with DID either doesn’t take our insurance or isn’t taking any new patients.  So we’re just shit outta luck cause not everyone is lucky enough to be able to just find a better therapist like it’s no big deal.  So maybe I’m being stupid but I don’t care anymore.

willow

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Exhaustion Takes Over

I honestly don’t known if I can keep doing therapy much longer.  Not because of therapy itself–the problem is that getting there is kicking my ass.  When I still had my team, they’d give me rides, so it was no big deal.

Yesterday was my first time getting there on my own.  It’s two towns over and takes about 30 minutes by car.  On public transit, though, it took me three hours.  Then there was the mile I had to walk straight uphill on a very icy road.  I fell twice and banged the hell out of my knee and hip.  It was even more treacherous going downhill afterward.  By the time I finally got home, I was completely exhausted and in a lot of pain.  I took a hot bath to help with the pain, but then I fell asleep in the bath.

I can’t do this twice a week.  There’s just no way.

You’d think it would be fairly simple thing to just find a new therapist who’s closer/more convenient to get to, but it’s really not.  It took me 6 months and three bad therapists before I found A.  I went through literally every therapist in the county who deals with trauma.  There isn’t anyone else who takes my insurance, so it’s A or nobody.

Also, a part of me (or, more likely, many parts) just don’t even want to bother with therapy anymore.  It feels like too much effort and too little payoff.  They/we would rather just sort of fade away from everything, leave the apartment as little as possible, basically just disappear.  It feels like everything is such a monumental effort, and there’s very little payoff to make it worth bothering.  But that’s probably just depression talking.

I just wish things were not so hard.

A tried to convince me to get out of the house every day.  I told her I would mostly to get her off my back about it, but it’s not going to happen. Today I was so exhausted and in so much pain that I stayed in bed until almost 2:00, and by that point it was kind of too late to go anywhere.  I very much doubt that I’m going to go anywhere tomorrow, either.  I feel like A just doesn’t get it–when you don’t live with chronic fatigue and pain, you don’t understand how hard it is to function.  I’m not just being lazy or giving in to my depression.  Unlike her, I can’t just hop in my car and go wherever I want, so it costs me a lot more spoons to do everything because I either have to walk or take public transit, both of which are exhausting and pain-inducing.  And it drains me for days, sometimes, so I can’t always do something the next day.  I don’t think that’s something you can truly understand if you haven’t experienced it.  But now I feel guilty because I agreed to get out, and it’s just not gonna happen.  I feel like a liar, and I feel like I’m just lazy and worthless.

I just wish everything weren’t so hard.

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