My Experience Only. YMMV.

Posts tagged ‘my experiences’

Don’t Tell Me Not to Feel the Way I Feel

“Don’t be sad/angry/upset.”

“Calm down.”

“Smile. It’ll make you feel better.”

“Stop getting all revved up.”

Never in the history of ever has any communication of this sort had the desired effect on a person – especially one with bipolar disorder.

When you offer this sort of “advice,” what you are basically doing is telling the person not to feel the way they feel. Not only is this useless, it’s insulting.

It’s useless because ordering someone to feel a certain way simply won’t work. Saying, “Be cheerful” will not make it so. Emotions aren’t like flipping a switch on command. Even for neurotypical people, emotions are complex interactions of chemicals in the brain. While some people claim – or may perhaps be able to – shift their emotional state at will (from angry to merely annoyed or to neutral), it isn’t easy or natural. There’s a reason that you feel the way you do.

For the person with bipolar disorder, it’s even more difficult – if not impossible – to shift moods at a whim, especially someone else’s. Bipolar is a mood disorder. It affects moods and emotions in a nonstandard, often unpredictable way. Telling someone to alter their own brain chemistry merely by thinking about it is ludicrous.

Even if the bipolar person’s moods or feelings seem exaggerated or uncalled-for to you, that person is having an experience no different than when you feel elated or despairing or fearful. The emotions may even be more profound, less susceptible to alteration by force of will.

But telling bipolar people not to feel the way they feel is not just pointless, it is insulting. You are denying their perception of reality, invalidating their experience, dismissing their concerns, minimizing their problems, discounting their feelings. In effect, you are saying, “I don’t feel the same way, so your feelings are wrong. Change them to match mine.”

Imagine that you have written something – a report, a poem, whatever – and feel good about it. You’ve made your point and done it well. You’ve captured reality as you see it and communicated it in a way you think is clear and effective. Then someone comes along and reads it and says, “This is crap.” They have denied what you feel and believe. And even if they’re right, even if it is crap, they have profoundly insulted you. And, of course, they may be wrong.

Diagnosed bipolar people already know that their emotions do not run the same as other people’s. There’s no need to remind them of that. And bipolar people are generally doing what they can to alleviate their symptoms, be it through therapy, medication, mindfulness, meditation, or whatever works best for them. When you discount their feelings you are discounting them as persons. That can be anywhere from annoying to soul-damaging.

Adam Savage, of Mythbusters fame, sometimes wears a t-shirt that says, “I Reject Your Reality and Substitute My Own.” He is (I hope) talking about substituting a provable, scientific reality for a mythical, uninformed one.

But to go around substituting your own emotional reality for other people’s – and trying to make them agree with you – does a disservice to the people you think you are trying to help.

So, what would be better than saying, “Don’t feel ________”?

How about, “I know you feel _________ and I can see why.”

Or “I can tell you’re feeling _______. How can I help you?”

In other words, start by acknowledging that the other person’s feelings are real. Then ask what the person needs. This lets the person know that you understand his or her feelings and that you would like to help in the way that the person thinks best.

If you know other things that have worked in the past, you could suggest them (after validating the feelings, of course). Would you like me to run a hot bath? Do you need a hug? Do you just need time alone? Do you want to talk about it? Maybe later?

It occurs to me that this is not really news to a bipolar person. The ones who need to read it are the ones who are doing the invalidating, not the ones who feel invalidated.

So, if you know someone like that – a friend or loved one, feel free to copy this post and give or send it to them, if you think it will help. I know it helped me when I figured out what was going on and what my husband and I could do about it.

The Tools for Tackling Bipolar Disorder

When you’re facing bipolar disorder – which is, when you have it, nearly every day – there are some things you can do to lessen its hold on you. But in order to do so, you’ve got to have the right tools. Try to collect as many as possible for best effect.

Shall we take a look at what they are?

The Usual Suspects

  • medication – to tame your symptoms, level your moods, get your brain back in gear, and/or regulate your energy
  • psychiatrist – to prescribe your medications (a primary care physician may also do this)
  • psychotherapist – to discuss with you the issues you haven’t resolved, the problems you still have, and the things the medication can’t do

Self-Care 

The two most important tools you need for self-care are sleep and food. Without either, the body can’t function properly, and if the body doesn’t function, the brain is less likely to function properly either.

Ideally, the food should be nutritious and eaten regularly, but let’s face it, that doesn’t always happen. But you’ve got to give your body something to run on. If there are carrot sticks there, eat them; if there is mac-n-cheese, eat that. If there’s Raisin Bran, well, it’s easy to eat and requires no preparation. Try for at least one substantial meal per day – two is better, if you can manage it.

(Of course, this advice doesn’t count if you have an eating disorder. In that case, see your doctor or psychotherapist or support group.)

Support

Find support where you can – a friend who’s willing to listen, a support group online or in real life. Try for a combination of these and don’t rely on any one of them for too much. Maybe you have a friend you can phone once a week; a support group that meets every two weeks; and an online group or two of people who really understand, with links to helpful articles and blogs. Before you know it, you’ve got a support system, especially if you count your therapist (which I do) or have a supportive family (which I don’t).

Spoon Theory

If you don’t know what this is, see https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/. Basically, Spoon Theory is a way to measure how much energy you have on any given day – and an understandable metaphor for explaining your symptoms to others, and a shorthand for other people who are also up on the theory. It can also help alleviate the guilt of not being able to do all the things you are “supposed” to do in a day. It’s not an excuse, but an explanation.

Distraction

Let’s face it, it’s all too easy to dwell on your symptoms and how miserable you are. And if you’re at the bottom of the depressive well and your meds haven’t kicked in yet, there may be nothing you can do about it.

But maybe there is. Do you know a person who tells good jokes – or really bad ones? Do you have music you used to play but have forgotten about? Do you know of a TV show that features people whose lives are an even worse train wreck than yours? Do you have a go-to movie that never gets old no matter how many times you see it? (Mine is The Mikado. )

Creativity

If that distraction involves creativity, so much the better. Coloring books and pages for adults have been the trend for a while now. (Some of them are really for adults.) Jenny Lawson draws and also puts together tiny little Ferris wheels. I know someone who can make little sculptures out of drink stirrers or paper clips. The point is, you don’t have to paint masterpieces. Just keeping your brain and your hands occupied is a good idea.

Comfort

Soft warm, fluffy things and smooth, silky things are soothing. They just are. Cats and dogs come instantly to mind (they also provide distraction). But I also have a collection of teddy bears and other plushies that I sometimes cuddle with. These are “comfort objects,” which is an actual psychological Thing. (I wrote about them once: http://wp.me/p4e9wS-k9.) I even took a plush bunny with me when I went to have a sleep study.

Stubbornness

This may be the most important tool of all. Be stubborn. Take those meds, even if you hate them. Eat that egg, even if you don’t feel like it. Go to that appointment, even if will take all your spoons for the day. Call that friend, even if you don’t think a joke will help. Post on your support group, even if you feel you are alone.

We can’t let bipolar disorder beat us. Not when we’ve got so much to beat it back with.

When Bipolar Disorder Wrecks Your Sex Life (NSFW)

I had a hot sex dream last night. That’s fortunate, as it’s the only hot sex likely for me these days. I have bipolar disorder 2 and tend toward the depressed.

I have only once experienced the hypomanic rush that leads one to the desire for uninhibited, crazy, insistent, steamy motel sex. So I can’t really tell you much about that, except to make sure it’s safe sex, even if it is spontaneous, wild, and compelling. Coping with the aftermath is also something I can’t help with.

So. Bipolar depression and sex. (I am writing from the point of view of a cis-gender heterosexual female, so YMMV.)

It will likely come as no surprise to you to learn that bipolar disorder has an effect on your sex life. And, aside from mania, that effect is to lessen or completely kill it. And there are varying levels: low libido, lack of desire, difficulty ejaculating, etc. The question is what to do about it. Here are some examples of advice:

[S]ex is a part of life and it’s a part you don’t want, or need, to hang up just because you have a mental illness…There are therapeutic techniques that can deal with hypersexuality or low sex drive, and, of course, there are always medical options as well.

http://www.healthyplace.com/blogs/breakingbipolar/2013/01/normal-sex-bipolar/

And this:

Getting bipolar disorder under control is the first step to improving your sex life. It’s easier to address these issues when your moods are stable. Many people with bipolar disorder have healthy relationships and satisfying sex lives. The key is working with your doctor to find the right treatment and talking with your partner about any sexual issues.

http://www.healthline.com/health/bipolar-disorder/sexual-health#outlook5

And that’s all well and wonderful, but how much does it actually help?

Not that I’m an expert, but here’s what I can say about the subject.

Realize that most of sex happens in the brain. The body goes along for the ride. If you’re bipolar, you’re already having trouble with your brain. It makes sense that you’d have trouble with sex too. Don’t beat yourself up. It can be a nuisance or a sorrow or a loss, but it doesn’t have to be a tragedy.

Decide how much sex you actually need in your life. Some people have naturally low sex drives and are quite satisfied with long gaps between sexual encounters or occasional masturbation. If this is the case for you, dandy. The real problem comes when you and your partner(s) have a mismatch in your sex drive. That’s where the talking comes in.

Ask for what you need and encourage your partner to do the same. And accept and/or give what you can. If you need a hug or a cuddle, ask for it. If your partner asks for one, give it. Don’t push for more right then. Even if you have no desire for “the act” yourself, you may be able to give your partner some of what she/he needs. Or vice versa. Of course, if you’re at the very depths, you may not even be able to ask for a hug. But if one is offered, don’t turn it down. Keeping that bond going may improve your connection when the depression has eased.

You can try different medications or see an endocrinologist, but don’t expect quick results. Or any, necessarily. The one drug that peps up your libido may also be the one that gives you side effects you can’t handle. And after years of trying different combinations of pills, you may decide, like I did, that having a reasonably functioning brain is more important to you than having regular sex. In other words, you may face a trade-off.

Listen to your body as well as your brain. I already know that my brain is not performing up to specs. Occasionally, when I’m reading a book or watching a movie or remembering a dream or thinking about an old friend, I feel something that reminds me of what it is to feel desire. If that happens, enjoy and encourage it. It’s a signal that you may not be totally numb from the neck down.

I could tell you that everything will be okay and you’ll soon be back to romping between the sheets with wild abandon. I haven’t seen statistics on it, but it seems unlikely. If you want to get your sex life started again, you’re going to have to work at it, just like you work at taming your bipolar disorder.

 

Why Do I Write About Mental Illness?

I have bipolar disorder. But that by itself isn’t the answer. Here’s why I write about mental illness and mental health.

It’s what I do. I’m a writer. It’s what I would be, bipolar disorder or not. I’ve been writing since I was a kid, and writing and editing professionally for decades. But that isn’t the whole answer either.

It’s what I have to do. I have plenty of topics to write about besides mental illness. Over the years I have written poetry; a few children’s stories; and articles about martial arts, religion, cats, education and teachers, technology, architecture, and other subjects. In addition to this blog, I have another – janetcobur.wordpress.com – in which I write about whatever crosses my mind or my path – books, news, humor, and the things that made me name my blog Et Cetera, etc.

But this blog is the one that I have to write. It started as journaling but quickly – in a matter of weeks – became more.

It’s what I am. Mentally ill, that is. A life-long acquaintance with – or rather, experience of – a mental illness makes the subject one that goes to the bone. I can’t call up a memory from my childhood that doesn’t involve desperation, sobbing, and disaffection, or fragile, giggling glee at things no one else noticed or cared about. My college years were marred by distress, anxiety, and apathy. My adulthood has been marked by breakdowns, immobility, and psychotropics. I can’t get away from the subject, even if I try.

I have the skills for it. I have read a lot about mental illness and bipolar disorder, in self-help books, more scholarly works, memoirs, and even fiction (http://wp.me/p4e9Hv-nE). I have an academic background and an intelligent layperson’s knowledge of science and psychology. I can share that perspective with others.

It helps me and others understand. Examining aspects of bipolar disorder necessitates that I learn more about it – and therefore about myself. Planning, writing, and editing posts help me clarify my thinking about this illness I live with every day. Sometimes I am just too close to it until I step back and look at it from a different or even new perspective. That’s one of the benefits for me.

The feedback I get – comments from readers and other bloggers – leads me to believe that what I write has value for them too.

It needs to be talked about. The general public – society at large – doesn’t understand mental illness. There are widespread jokes, misunderstandings, and inaccurate media portrayals. Above all, there is discrimination – in jobs, housing, medical treatment, the legal system, and more. There is more trash talked about mental illness and psychotropics every time there is a mass shooting incident or a domestic terrorist bombing.

One of the solutions to these problems is education. Most of the writing I’ve done in my life has been on (or near) the subject of education. I consider myself an advocate for education. And now I am an advocate for education about mental illness. That education should start in public and private school health or social sciences classes. It should continue in adulthood for those who never learned it in school.

Celebrities like Glenn Close and Richard Dreyfuss have big names and big audiences and a vital message to spread about mental illness. I don’t have the big name or the big audience, but I do what I can.

Because the people, including me, who live with bipolar disorder and other mental illnesses every day, need messages of hope and sympathy and experience and activism and explanation and thought and outrage and kindness.

And that’s why I write about mental illness.

 

 

 

 

Self-Care for Overwhelming Days

It’s been said that time is nature’s way of keeping one damn thing after another from being every damn thing all at once … However, every now and then the damn things gang up on you.

– me, “The Overwhelming Problem,” http://wp.me/p4e9Hv-hy

It’s also been said, by Canadian astronaut and all-around awesome guy Chris Hadfield, that he managed to stay alive in space by always asking himself, “What’s the next thing that might kill me?” If, for example, the most immediate danger were running out of oxygen, the next thing to do would be to check your tank and hoses.

I find that attitude soothing in a way, and helpful in getting through one of those every-damn-thing days. It’s not traditional positive thinking, but it does help you set your priorities.

Today and yesterday and the day before have been examples of every-damn-thing days. I’ve gotten through by asking myself, “What’s the next thing I absolutely have to do?”

It starts when I wake up and can involve the simplest of decisions: Do I take my meds first or do I pee first? Pee first. Pee first is almost always the correct answer and is one of the Mystic Rules of Self-Care.

Do I get dressed or do I eat something? I don’t absolutely have to get dressed yet, because I’m not going out anywhere yet, so eat something. Eat something is almost always the correct answer and is another of the Mystic Rules of Self-Care.

This can get me through the entire day. What is the next thing I absolutely have to do? Get dressed. What is the next thing? Go to the bank and get money. What is the next thing? Pay the power bill. Those are absolutes if I want to have a functioning computer. And I do. Very much.

Next comes a real decision: K-Mart is right next door to where I pay the power bill. Do I stop in and get the loaf of bread I need and maybe some underwear, or do I eat first? I eat first. (See above Mystic Rules.) By the time I finish my banh mi (if I’m out and dressed and in motion, I may as well make the most of it), it’s pouring rain. Do I absolutely have to go back to K-Mart, walk through a wet parking lot, and get that loaf of bread? I do not. I go home. One errand (two if you count the bank, and I do) is a major accomplishment for me.

After I get home, there is no “next thing I absolutely have to do,” so I switch to “What is the next thing I could do?” Say there are three choices: take a nap, watch TV, do some work. Obviously, the work is out. I am spoonless by now. I decide to watch TV until closer to bedtime, then go to bed.

If there is work that absolutely has to be turned in the next day, I get up early and do it when I have a fresh supply of spoons. (After peeing first and taking my meds.)

There is also an element of creative procrastination to this. (See http://wp.me/p4e9wS-ct.) It’s like sorting your tasks into three piles: absolutely, would be nice, and meh. Not that I’m recommending writing them down. That’s not flexible enough. Throughout the day, an event can wander down the progression. “Buy loaf of bread” started out as Category 2, but the rain pushed it into Category 3. I ate the other half of my banh mi for dinner and bought bread the next day. And if I hadn’t had the banh mi, I still had a jar of peanut butter as a back-up plan. Eating it straight out of the jar is pretty depressive, but you do what you have to do when your spoons run out and you still need self-care. (Have I just discovered another Mystic Rule?)

Of course, I’m describing a moderately-functioning day. There are other days when the categories shut down after peeing and meds.

What Is It With Showers Anyway?

Girl is choosing cosmetics in bathroomIt is fairly widely known that people with bipolar disorder and/or depression have trouble taking a daily shower. It’s not that we don’t know what’s involved in taking a shower, or why it would be good for us to do so, it’s simply that showering uses up a tremendous number of spoons.

Here’s what showering looks like according to Andrew Solomon, author of the now-classic The Noonday Demon:

I ran through the individual steps in my mind: You sit up, turn and put your feet on the floor, stand, walk to the bathroom, open the bathroom door, go to the edge of the tub…I divided it into fourteen steps as onerous as the Stations of the Cross.

I performed a similar exercise in one of my blog posts (Brain vs. Brain: http://wp.me/p4e9Hv-iF) and here’s my version:

First I have to find a clean towel and a bar of soap, get undressed without seeing myself in the mirror, fiddle with the water temperature, wash and shampoo, dry off, find clean underwear, and that’s not even thinking about drying my hair and figuring out what I can wear! Oh, my God, I’ve used up all my spoons just thinking about it! I should just eat Cocoa Puffs and go back to bed.

Now let me say, first of all, that I don’t really like showers. I grew up taking baths and have never enjoyed the sensation of water spraying in my face. But with my bad back and bad knee, getting up from sitting in a bathtub is nearly impossible these days. (Please don’t ask me why anyone would want to sit in dirty water. Everyone says that when I say I prefer baths. I have a nice long soak, steeping in the clean water like a big teabag, and only then wash up and get right out. Used to, I mean.)

To most people, showering is a single act that requires the expenditure of a single spoon. Take a shower; that’s it. But for those of us with invisible illnesses, each separate step may require its own spoon. Take something as simple as finding a towel, for instance. Go to the linen closet, grab a towel and voilà! Only a fraction of a spoon, if that.

But surely you don’t think I have had the spoons to fold and put away my laundry. It is all there in a jumble on top of the dryer. (Who needs a wrinkle-free towel anyway?) I have to root around to find one, and maybe twice if a cat has thrown up on the first one I pick. (They love sitting on clean laundry.)

If I have to go to a business meeting I force myself to use some of those spoons showering and getting dressed and acting respectable. But I will pay for it later, collapsing after the meeting in need of a mega-nap.

Now here’s a little secret I’ll tell you. Most people believe you gain spoons by going out of the house – walking in the fresh air, meeting friends for lunch, shopping, going for a drive (does anyone do that anymore?). But the fact is that, according to Spoon Theory, you get a certain number of spoons every day when you wake up. You cannot gain, buy, beg, borrow, or steal any more, not even by breathing fresh air. You can only spend them.

Given the mathematics of spoons, I don’t spend a single one that I don’t absolutely have to. Not going out? No shower. Have to go out for a loaf of bread or a drive-through meal? Wash up in the sink. If I need a shower between outings, my husband reminds me and facilitates by, for example, rummaging on the dryer for a clean towel and clean clothes or a clean nightshirt.

I need those spoons for doing my work at home in my smelly pajamas more than I do for the ordeal of showering.

As a Muse, Depression Sucks

Pencil tied in a knot on a white backgroundRecently, someone commented that I didn’t write like I was depressed, even though I actually was at the time I wrote.

This week I am even more depressed, so I thought I’d give you a look inside my head as I try to write while depressed and/or anxious.

::typing:: “Donald Trump Is Not a Monster. He may be a liar, a bully, and a misogynist who is uninformed, egotistical, and thin-skinned, but he is not a monster. Monsters are mythical. They are what we invented to be The Other. To say a person – Timothy McVeigh, Ted Bundy, Donald Trump – is a monster is to say that they are Other: not human beings. In reality, they are all human beings, who may have done monstrous things. But they are motivated by the same things as all humans: greed, fear, hate, sex, fame…”

::thinking:: No. That stinks. Half the people who read my Et Cetera, etc. blog will hate me because I said Donald Trump is not a monster and the other half will hate me because I compared him to Timothy McVeigh and Ted Bundy. I’ll offend everyone at once. Maybe I could write “How to Offend Everyone at Once.” No, that’s a terrible idea. My goal is not to offend.

::still thinking:: Why am I so afraid of offending anyone? Is it because when I’m depressed, my self-esteem is super-low and I can’t afford to lose any more friends? Is it because I’m female and was raised to be a people-pleaser? Then why haven’t I pleased more people? Is it because I don’t want to be called a “special snowflake”?

::still thinking:: My knee hurts.

::still thinking:: Maybe I should write something about education. What, though? The education issue everyone is talking about is Betsy DeVos. I only know about her what others have written. Writing about her would be useless and boring. Crap. It’s already Friday and I don’t have anything. I’m not going to have a thing to post this week.

::still thinking:: What’s another go-to topic? Books. I just re-read The Handmaid’s Tale and that’s totally relevant.

::typing:: “The Handmaid’s Tale: A Tale for Our Times”

::thinking:: No.

::typing:: “Written Thirty Years Ago and Still Relevant”

::thinking:: No. Hardly anyone reads my book posts anyway. How can I have been doing this for three years and not have more followers? Is that why I write? Ego gratification. I’m a sad, sad person who needs external validation instead of interior satisfaction.

::still thinking:: My husband doesn’t even read my posts half the time, even if I mention him. Maybe I could write about bipolar disorder and sex. No, I’d have to do too much research and I’m running out of time. Besides, with my luck, my husband would read that one and not want our sex life all over the Internet.

::still thinking:: My knee still hurts. How long have I been sitting at this stupid computer?

::typing:: “I Hear Voices” – I’ve been meaning to write that one.

::thinking:: No. I don’t hear voices like psychotics hear voices. All I hear are Pete Seeger singing pizza commercials or a men’s chorus or an NPR broadcast that I can’t quite make out. That’s boring. My life is boring. Besides, I’d have to do too much research and I’m running out of time.

::still thinking:: I could look up some quotes about bipolar and say whether I agree with them or not. More research again. Besides, who cares whether I agree with them or not?

::still thinking:: Maybe I could re-post one of my old posts. Wouldn’t that be cheating? If I can’t some up with something by tomorrow, I may have to. But that’s like admitting failure. Like I can’t write. Maybe I can’t write anymore. Maybe I’ve already written everything I know.

::still thinking:: Maybe I could write about not writing. Too boring? Too meta? Don’t people hate stream-of-consciousness? Especially stream-of-depressed-consciousness. It’s so bloody depressing. I’m so bloody depressed.

::typing:: Recently, someone commented that I didn’t write like I was depressed, even though I actually was at the time I wrote…

::thinking:: Now how am I going to illustrate this?

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