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At this point, I don't think there's anyone who hasn't heard about Robin Williams's death, ostensibly from suicide. Something that does bother me, perhaps more than the assholes that make comments about suicide being the coward's way out (and if this is something lurking in the back of your head, please read this essay, which is the most excellent I have read on the topic), is that the fact that Williams had bipolar disorder is all but forgotten.

I have bipolar disorder, type 2. This is generally considered the "less severe" type. I have no idea what type Robin Williams had, and it doesn't especially matter, since suicide is a risk factor for both types. I'm not entirely sure what I'm meaning to write here, but the rest is going to go under a cut with a general trigger warning for discussion of bipolar disorder, depression, suicide, coping mechanisms, related etc.

This strikes very close to home for me because Williams committed suicide shortly after receiving a diagnosis of Parkinson's. I went through a very rough period before I got my rheumatoid arthritis diagnosis, because the symptoms were so bad, and I could not manage or cope. The specialists I had seen were not helping, and I didn't have the money to get the multitude of tests I really needed. The only reason I got my diagnosis is because my amazing primary care doctor of the time noticed two tests hadn't been run, he ran them, and what came back he said suggested an autoimmune disorder, so I was sent to the doctor he personally recommended, who diagnosed me in about two visits.

For me, it wasn't the diagnosis; it was the lack of diagnosis. I wasn't diagnosed with bipolar disorder yet, either, and the lows... while not as low as when I wasn't on birth control that worked for me (seriously, there needs to be more research into connections between hormonal changes and bipolar episodes, because I'm not the only person who has experienced this... but unfortunately, medical research in specific to women's issues is very uncommon), it was... scary low. Even when trying to use my general coping mechanisms, I came closer than I ever had, and I'm not sure even Morgan (my married partner) knows how close.

I remember getting my usual medications filled, which include sleeping medication, muscle relaxants, and at various points, two forms of painkillers. I remember some months, staring at the bottles, and I know way too much about pharmacology. I leave them untouched, except for normal usage, because the thought in my head is of Morgan finding me dead. I couldn't do that to them. I knew that if I committed suicide, they would likely follow, and if they didn't, they'd be left with grief that I can't put into words.

I'm still here. But I am terrified that some day, I will, like Robin Williams, lose that battle. He fought that battle, and won it, for nearly seventy years, before it took him. I'm lucky that I'm on medication that works for me (well, mostly; I've mentioned wanting to go off Seroquel because of the correlation between that and my creativity drop, but I'm on Lamictal as well, which had been REALLY GOOD for my creativity, so even if I went off Seroquel, it would be fine, as I was once on just Lamictal alone and it kept things under control); for many people with bipolar, it's a struggle to find medications that don't cause creative drought. Many doctors don't care about creative drought, or other side effects like weight gain, or loss of sex drive. And when you're depressed and suicidal, it's hard to argue with your doctor and far easier to just take the pill. I don't know what medications Robin Williams was on or had tried, but I don't think it matters; it's been said that he frequently went off them to tap into the mania for his performances.

And good gods, as a creative person, I can understand that. When I was seventeen, I spent most of a year in a creative-manic state. I wrote nearly 60k words in one week, during this. No, they weren't all good words, but they were words. In a year, I finished three novels, half of another, one short novel, and I can't remember how many short stories. I was manic as fuck, and the feeling was amazing. I remained in a slightly manic state through 05 and 06, but since 07... except for that period when I was on Lamictal alone (which I was taken off of because my doc said my sleep issues were due to it, which my new psych basically said "WTF!?" to)... I've been mostly in a depressive, or baseline leaning towards slightly depressive, state.

Knowing what mania feels like, wanting it... it's hard to describe to people who haven't experienced it. It's excitement and enthusiasm and joy, and it's even more than that. Those words hardly describe it. I'm not sure there are words to describe it properly. It's like bathing in the creative well, being surrounded by it, like all around and in you is your creativity and your joy. Unlike my Seroquel, my Lamictal left me baseline leaning slightly manic, but not to the point of being uncontrollable.

I will also note there is a difference between mania and hypomania. What I have is hypomania, which generally presents in productivity. True mania (usually typical of type 1) can be intensely harmful, with uncontrollable gambling, sex, drug use, alcohol use, and other things.

I'm not entirely sure, still, what I'm trying to say. I suppose this is about me, in a way, because if one thing has come out of this, it is that bipolar is overlooked, and misunderstood. We are dismissed as depressives, when our condition is far more complicated than that. Our condition used to be termed manic depression, because of its presentation. We vacillate between mania and depression, and then there are what is termed mixed states, where we experience both at the same time. I've experienced this. It's about as pleasant as it sounds.

It is something incredibly difficult to live with. I have friends with it who have tried every medication available to them for bipolar, and nothing has worked without extreme side effects. Some learn coping mechanisms and control, but I believe that lasts only so long. It's hard, when you're in the midst of -- I wouldn't even call it depression; I would call it despair. It feels like everyone in the world would be better off without you. It feeds you lies that are gut deep. It leaves you crying, and wanting to stop the pain, anything, anything at all, to make it stop. And it doesn't stop, not until the episode passes. And that time... is very dangerous.

So is the mania, because while the mania is glee and joy, the higher the mania, the lower the drop. I have gone from feeling on top of the world, like I could do anything, proud of my accomplishments, to feeling despair and that nothing I ever did would amount to anything and that my partners would be better off without me there. I have so far been able to hold onto that shred of belief that no, they wouldn't be better off. Morgan in specific has said outright, in discussions about this, that if I committed suicide, they would follow, because they would not want to live without me. Perhaps that is not a fair thing to say, but it is a shred I hold onto; that I am not just taking my own life into my hands, but that of the person I married, someone I love with all my heart. I hold onto that, and I can't do it.

I have my own coping mechanisms. They might not be the most healthy. I listen to depressing music, which isn't hard to find when you're a goth, and I actually have a playlist titled "Depression." I listen to songs that you would think would drive me closer to suicide, but actually help keep me from it, because they sing how I feel. I can't write when I'm in that state, but I read a lot on the internet, and I am very blessed to have a wide support network so if I need to talk -- and I don't always; sometimes there's nothing anyone can say, but sometimes I do need other people -- I can. I'm not alone. I have people who love me who are aware of the severity of my condition. Sometimes I cut, but that's rarer at this point; I don't particularly feel shame at that, though. I would rather cut than do something more harmful. Mostly, I rock in my chair, listen to my music, and cry.

So I leave you with the chorus from one of the songs I listen to, when I'm stuck in that place, when I'm most depressed:

The sun was born, so it shall die, so only shadows comfort me.
I know in darkness, I will find you, giving up inside like me.
Each day shall end as it begins, and though you're far away from me
I know in darkness, I will find you, giving up inside like me

- Further, VNV Nation

This entry was originally posted at http://nonny.dreamwidth.org/523237.html. Please comment there using OpenID.


( 5 comments — Leave a comment )
Aug. 24th, 2014 04:32 pm (UTC)
Can't say much through this migraine, but yes. All of this. and Naamah's post, too.

(And I have been at the point of physical pain, when my TN had been unsuccessfully treated for almost 6 years with meds that had terrible side effects and few benefits, when I had less than 10 functional days per month, and "functional" meant "pain still at a level that would send many people to the ER," when the neurosurgeons had turned me down -- you know you're in unbearable pain when brain surgery is preferable -- and I said to myself, "I can't live with 30-40 more years of this." That's the bitch of EDS -- you break down piece by piece, you acquire comorbid diagnoses like TN and PN and Hashimoto's... but you generally have a close-to-normal lifespan. I can expect to live another 20-40 years, if I don't get cancer or have an aneurysm.)

Those were RATIONAL thoughts -- I had, to my knowledge, run out of options... and remaining in unendurable pain indefinitely was not a future I could face.

I am so fortunate to have my loved ones, because the thought of what it would do to them stayed my hand... for a time. I knew, though, that I was eventually going to break, and I tried to figure out what I would write to them, to try to make them understand how much I wanted to live, to be a part of their lives, to grow old together... but that living with this level of pain was more than I could take forever.

I am so grateful for my referral to Pain Management. Oxymorphone *saved my life* -- I still live in more pain than many people can handle... but I have some level of respite, when I need it. (And its effects on my poor abused GI system guarantee that I take it as seldom as possible.

But, yes. While I have... what has been described as either atypical depression or atypical bipolar or something else, depending on the doctor... mental health issues that include anxiety, depression, and hypomania, my physical issues were what caused me to contemplate suicide. (I have experienced what I describe as "organic depression," what people with major depression have to live with all the time, when my thyroid crashes... and it is fucking *awful*. Living with that, with no relief in sight, is a pain as profound as my physical pain.)

I will do everything possible to save the life of a suicidal friend... but I will not *blame* them if, eventually, the path runs out and there is only the forest, the thicket and the thorns, in every direction they turn.

My role is to blaze a trail, if I can -- not to castigate them for becoming trapped.


-- A (hurts to type, but apparently I can't DO short answers on this subject. Some other time, death with dignity and why treating suicide as a criminal act harms the suicidal and deters them from getting help.)
Aug. 24th, 2014 05:01 pm (UTC)

Jury's still out on whether or not I have EDS. My Fairy Gothdaughter, Bridgette, whom I have been prodding to ask for help on the HMS/EDS group on FB (and I may go do that myself, actually), is dealing with diagnosed hypermobility that has increased in severity in just a month. She is dealing with daily pain, and will be going to college through our state's Running Start program, which pays college tuition for qualifying teens. She wanted to be a massage therapist, but she realized that during the course of Guardians of the Galaxy, all fingers on both hands popped out of joint six times. There aren't many doctors out here that treat EDS-H; I'm asking my friend who keeps updated if the doc that last I knew was in training at UW is ready to accept patients; otherwise we are looking at perhaps flying her out to see Dr. Francomano in Maryland.

Which is an aside, but... yeah. I've had between a half dozen and a dozen people say, "You need to get screened for this because you sound like you have EDS", and I have already been told I am hypermobile. I have the requisite collection of disorders, and both Morgan (who has been diagnosed with hypermobility syndrome, which, depending on who you talk to, may or may not be EDS-H) and I have bitterly commented that we both have families with exceptionally long lifespans (90+).

Pain Management terrifies me. I can get MMJ here, albeit through my partner that has the script (I really need to get my own, but we don't have the money at the moment), but I don't like using it for everyday pain because of how it makes me feel. It's more an emergency pain med. I wish I could get something more than Norco, because it's just not enough. My doctor is hesitant to script even what I currently have, though, and a lot of doctors here won't script; they send to pain management. I worry about the random drug tests, and I worry about the fact that if you have to go to the ER, you'd be breaking the contract if they give you pain medication. As I historically end up needing ER on the weekends (seriously, I think every single time I have been in the ER has been a weekend)... yeah.

I feel much the same way, re: blame. I will be sad, but generally... I understand. I sometimes wish I didn't. But I do.
Aug. 24th, 2014 06:57 pm (UTC)
Not everyone has the same EDS progression -- sorry, I don't mean to make it sound entirely bleak, my family has been so hard-hit that I'm mostly speaking of my own experiences and those of Kira.

(EDS is a progressively degenerative disease -- it's not technically degenerative in the strict medical meaning, because the collagen defect itself doesn't get worse as you get older, it's just that the injuries and microtraumas and associated damage to connective tissue in joints, organs, etc. add up over time. The effect is a degenerative progression, even though the underlying defect is the same one you're born with. But how it affects each individual can vary -- I didn't develop disabling levels of symptoms until my very late twenties, whereas Kira got hit like a ton of bricks when she was 15.)

And not everyone gets the same co-morbidities -- trigeminal neuralgia is still rare, it's just a lot more common in EDSers than the general population. And that's been the thing that is hardest to live with, because it's affected my cognition so badly, as well as being the condition that most affects my level of functioning -- far more so than my spine, for all that it sucks.

Poor Bridgette -- yeah, massage is very difficult to perform with hypermobile fingers. I consistently jam my thumb and ring finger, and bend other fingers backward, when giving massages -- I enjoy doing it anyway, but I can't do deep-tissue massage anymore, and even back rubs can wind up hurting me.

Maybe she could do something similar but less hard on her hands? Acupuncture could be a possibility . . .

The silver ring splints have helped Kira a LOT. They aren't cheap, but they're well worth it.

Bridgette would need to see a hand therapist (Kira's was an occupational therapist who was a hand specialist) to be assessed and measured, because they're basically a prescription item, and they're custom-made.

They've made a huge difference for Kira -- she adores music and played the double bass, won a national orchestra award, stuck with orchestra for 12 years . . . and had to give it up entirely when her POTS became unmanageable and her hands started to deform after years of hypermobility (her fingertips were growing in different directions.)

With the ring splints, the DIP deformity has gone away, and she's actually started to teach herself to play the electric bass, and she's knitting again (she made socks! Real ones! Before, she'd mostly confined herself to knitting swatches or scarves, but she's actually doing the four-needle sock thing, and her socks are very nice!) It's a huge difference for the better :)

Re: pain management -- my current doctor has it in my contract that if I have a migraine for more than 4 days straight, I should go to the ER.

My previous doctor had planned on trying an infusion procedure on me to see if he could arrest the migraine cycle, but when he left, his successor was unresponsive when I had that hellish 11-day migraine, and without permission to go to the ER, there wasn't much I could do.

This time, I got it written in. You could do something similar -- say "Look, I don't want to go to the ER, and I have only gone _x_ times in the past _x amount of time_, but I need to make sure that we have a plan in place for what I should do if I encounter [pain condition] over a weekend. Either I need to be sure that there is someone on-call here to consult with, or I need permission to go to the ER if needed, with the understanding that we will amend the contract if I am using the ER more than necessary. I don't expect to need it often, I just want to have a plan in place for the times when I injure myself [etc.] on a Friday night, because I can't wait until the next week for treatment."

I'd think most doctors would find that reasonable. (And if you have a prescription for MMJ, you won't be in trouble for using MMJ . . . it's possible that you might have to choose between opiates and MMJ, but since it's legal in your state, there's a possibility that a doc would let you use both.

*big hugs*

-- A <3
Aug. 24th, 2014 07:12 pm (UTC)
I'll let Bridgette (Boo; I've sometimes mentioned her by her nickname) read this message. She's pretty upset, because it's something she really wanted to do. Acupuncture is a good suggestion; I actually suggested, since she's going into college and would be able to transfer credits to, say, UW, tech work. Morgan, as a systems administrator, works from home because so much server work is done on the cloud now, so they only rarely have to go to the office in Seattle. Their work has been very accommodating; they started out rarely needing to work from home, to needing to work from home more regularly, to working from home almost entirely. But that's an entirely different field, and I don't know how much interest she would have in that.

Is it possible to get the hand splints without an EDS diagnosis?

I hadn't thought about getting that written into the contract; I didn't even know you could do that. I've had to go... um. Let's see. I had to go more frequently in MA because perfume usage was significantly higher there. I think I've gone three times since moving here, which was five years ago? Once for migraine, once for what turned out to be c.diff and they gave me pain medication because I hadn't been able to keep pills down for over 24hrs, and then once for dental pain that I wasn't sure if was teeth or jaw, so they gave me a single percoset. I avoid going to the ER as much as possible.

I do intend to get a MMJ license myself, and I hadn't thought that would help with a pain management clinic. The MMJ helps with the fibro and RA pain, but it doesn't help with the subluxation pain from my hips. Which is weird and annoying, because everything else stops hurting, but because nothing else is hurting, the hips aching is suddenly impossible to ignore. If my hips aren't hurting, though, it's not a problem. While the MMJ is helpful for some things, I would strongly prefer stronger opiate medication because I don't tend to get high off those. I dislike the feeling of being high, at least in the way that MMJ makes me feel. I don't mind the slightly loopy, relaxed feeling from opiates, although I don't get that from what I'm on anymore.

*hugs* TY for the info. I think I am still going to post on the HMS/EDS board re: Boo, however, to see if there is anyone else with info that may be helpful. :)
Aug. 25th, 2014 01:19 am (UTC)
This hits really close to home as I've had a bipolar II diagnosis since 16 and got diagnosed with HMS/EDS in May. My right hip has been in and out of joint since late June (thankfully more in than out since early August so I was functional during my wedding/honeymoon) but it doesn't make anything easier.

(A link to the FB group would be great, I'm looking for input about said hip.)
( 5 comments — Leave a comment )