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Posts tagged ‘Spoon Theory’

Caregivers Need Care Too

While there are professional caregivers, family members often provide care and support for those with bipolar disorder and other mental illnesses.

My husband of 35 years is my caregiver. He does a spectacular job – making sure I have my meds, taking me to my appointments, running the errands that I have no spoons to do, keeping the house quiet when I need to sleep, making sure I eat at least one nutritious meal a day.

It’s a lot. And there are things I can give him in return. Things he needs.

Appreciation. When my father was dying of cancer, my mother was his primary caregiver. One day she came to me, wanting me to tell her that she was doing a good job. She knew that she was. She just needed to hear it from someone else, someone who could tell her that her excellent care had been noticed and appreciated.

Appreciation – validation – is the thing that caregivers need most, to replenish themselves, to allow them to keep doing the things that are so vital for their charges. And it’s the easiest to give. When you’re in the depths of depression, it may be difficult to remember to say “thank you,” but it means a lot to your caregiver.

Now I’m mostly out of my depression (usually), and I say “thank you” a dozen times a day. And he always responds, “You’re welcome, friend.”

Alone time. Primary caregiving can be a full-time job. I know that one thing I need in the process of healing is alone time. Dan needs it too. He needs time off, even if that’s just time to retreat to his study and watch a movie or go outside and dig in the garden. I can always reach him if I really need him – for example, if I have a panic attack – via cell phone if nothing else. But, as the saying goes, you can’t pour from an empty vessel. That’s part of the reason that he’s able to give me so much of what I need.

Couples time. This doesn’t necessarily mean sex. It means time spent together, doing something other than dealing with mood swings and trauma. It’s a little gift we give each other. Sometimes I sit through a movie I don’t really care for, just to give him the gift of snuggling on the couch. He got me color-and-bake ceramic mugs that are great for creativity and distraction. One rainy afternoon we sat together and each colored one side of the mugs.

Life stuff. Dan does most of the chores and tasks of daily living, but I do what I’m able to. I earn money. I pay bills online and do most of the other computing, except what he does for leisure. I help with cooking to the extent I can – sous-chefing, finding recipes, breading or mixing or inventing dressings and sauces, making grocery lists. He can ask me for help too.

Sharing my spoons. When I do find myself with a few spare spoons – a little extra energy occasionally – I try not to be selfish with it. When I have spoons to spend, I like to shower and dress and go out for lunch. But the other day, I showered and dressed and went for a walk in the woods with Dan, something he’s been longing for. My spoons ran out pretty rapidly, but he appreciated that I made the effort and shared one of his delights. It was another gift that cost no money.

In other words, when you have a caregiver, don’t think it’s all one way. Your caregiver needs care too. Small or large, what you are able to give will be appreciated.

 

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.

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.

Reaching the End of My Cope

Helpless Woman Holding RopeAnymore, I don’t very often have days when I can’t get out of bed, but this week I had one. It doesn’t matter now what caused it, but I am feeling the lingering aftereffects. Today I had no choice but to get out of bed, and I thought as long as I’m up, I might as well blog.

(Actually I can blog in bed too, since my tablet will take dictation, but it’s not optimal.)

I had been headed for bed-bound all week – the slowly creeping whelms; the feeling of being nibbled to death by mice; the recent trauma of two pets’ deaths; a game I couldn’t win, couldn’t break even, and couldn’t get out of. Expected relief came three days too late.

Aside from not eating, not getting out of bed meets many of my needs – quiet, rest, naps, not having to fight off the numbness and care about anything. And yes, there’s some feeling sorry for myself in there too. I won’t try to deny it. Staying in bed is a big messy wad of self-pity, anhedonia, lack of energy, trying to stave off thoughts, and generally not being able to give a shit about anything. It is more than sadness. It is as J.K. Rowling described the Dementors: You feel as if you will never be happy again. In other words, there’s nothing worth getting out of bed for.

When I was searching for images to go with this post, I entered “end of rope.” I guess I expected to see cute kittens dangling and inspirational quotes like “Hang on Baby, Friday’s Coming!”

Instead, what I found were endless images of nooses. Nooses by themselves or with people in them. Overturned chairs under nooses. Photos, illustrations, every conceivable image of nooses. According to the visual imagination of illustrators and photographers, “end of one’s rope” means suicide. There were some images of frayed or broken ropes, but the nooses were in the lead by at least four to one. (There were also a few nautical pictures with coiled ropes, but they weren’t statistically significant.)

That’s not what I mean by “end of my rope” – not dangling kittens OR nooses. Staying in bed all day, being unable to function, is a long, long way from suicide. Indeed, I find it a mechanism that staves off thoughts of nooses. Staying in bed admits of the possibility that tomorrow, or maybe the next day, I will have the wherewithal to drag myself out of that bed. Or that something will force me out of the bed and I will have to respond, as it happened today.

Hence the title of this piece. I have not reached the end of my rope – certainly not to find a dangling noose at the end of it. I have not reached the end of my hope, because I believe that some day (I hope soon) I will be out of the bed (at least as far as the sofa, and then who knows?). But when I stay in bed all day, I have reached the end of my cope.

This is not exactly the same as reaching the end of my spoons, because I don’t use up any spoons by lying in bed. And I don’t really know, or perhaps don’t believe, that I will have a new supply the next day.

I expect that some people will beat me up for being so useless as to give up for even a day, to be unable even to try. I know I’m beating myself up over it too. But today I am out of bed, for at least part of the day, and I am writing. That means there’s at least an inch of rope left. An inch of cope.

Brain vs. Brain

This first appeared as a guest post on Insights From a Bipolar Bear (http://www.insightsbipolarbear.com/). Bradley Shreve’s blog is great, insightful, and awesome (and not just because he featured my writing). Go check out his blog. After you read this post.

Conflict in mind

Having bipolar disorder is like having cognitive dissonance all the time.

What is cognitive dissonance? When people ask, I usually describe it as when the two halves of your brain slam forcefully into each other and give you a brain-ache. It’s also known as “brain go ‘splodey.”

Take, for instance, the time when I saw excerpts from the musical Cabaret – performed by women, the very youngest of whom was at least 65. As I reeled out of the theater, my mother saw the dazed look on my face and said, “Don’t you like Cabaret?”

“I love Cabaret!” I replied. Meanwhile, the other side of my brain was saying, ”Oh my God, if they had tried to do the Bob Fosse choreography, someone would have broken a hip for sure!” Slam! Pow! ‘Splodey! Cognitive dissonance.

You can probably see how this relates to bipolar. One half of your brain says, “If you just take a shower, you can go out to lunch.” The other half says, “A shower?!? 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.”

Instant cognitive dissonance.

Or try this scenario: You see on your newsfeed that the government is considering a new law with a feel-good title regarding mental health issues. “Hooray!” you think. “At last! Everyone should support this fabulous bill!” Then you look at the whole article and find that one provision in the bill allows violating the privacy protections of HIPAA, as an example.

“Oh no!” the other half of your brain says. “Any person, even one who’s mentally ill, has the right to medical privacy. What if an abuser gets information about his victim? I’ve got to write a letter protesting this bill. Where are my spoons? Did someone steal my spoons?

There are lots of these situations, hence the near-permanent state of cognitive dissonance.

I want to be around people but I don’t want to talk to anyone.

I want to be left alone but then I’m lonely.

I really want to make love to my partner but I can’t get aroused.

I want to be cured but I hate the idea of being “normal.”

That degree of cognitive dissonance is positively exhausting. No wonder we never want to do anything but lie in bed, not read, not interact, not reach out, not try to do anything but survive another day.

If we think too hard about anything, our brains may go ‘splodey.

Who’s a Spoonie?

With all the talk about cultural appropriation lately, I’m hesitant to wear Kokopelli earrings or eat at the Chinese buffet. I understand that some people object to Canadians playing Englishmen who are pretending to be Japanese for a production of The Mikado is offensive or racist. I don’t always agree, but I understand the principle involved. Even I, a WASP, find Mickey Rooney’s character in Breakfast at Tiffany’s to be egregious, appalling, and insulting to everyone involved, including the audience.

Hand XrayBut recently there’s come the claim that those who are not entitled to it are appropriating Spoon Theory language. And in this case, “entitled to it” means someone with an “invisible illness” – chronic pain, chronic fatigue, and other conditions that do not announce themselves to the public with visible cues such as wheelchairs, crutches, missing limbs, or guide dogs.

If you don’t already know Spoon Theory, you should. You can find the explanation here: http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/. Basically, “spoonies” have only a limited amount of energy units per day, represented by spoons. Spoonies must use a ridiculous amount of spoons to get through tasks that others accomplish normally in the course of life – showering, driving to work, driving home, fixing dinner, et endless cetera.

In fact, on any given day a Spoonie may not have enough spoons to get out of bed and get showered and dressed. It’s not that Spoonies are lazy; they may have only three metaphoric spoons that day, compared to a non-Spoonie’s typical, oh, I don’t know, 20? 30?

A few weeks ago, I wrote about whether bipolar disorder and other mental disorders are invisible illnesses: https://bipolarjan.wordpress.com/2016/03/06/is-bipolar-disorder-an-invisible-illness/. (I said they mostly are.) As far as I’m concerned, we’re Spoonies and “entitled” to Spoonie language. Most of us have had the experience of not having enough spoons to spend on a morning shower, having to choose between hygiene and, say, eating breakfast.

So now, apparently, the general public is picking up Spoonie language – saying “I’m out of spoons” when they simply mean “I’m tired” or “That was an exhausting day. I’m done.” And some Spoonies resent that. See http://m.dailylife.com.au/news-and-views/dl-culture/stop-appropriating-the-language-that-explains-my-condition-20160113-gm4whc.html

I have two things to say about it. The first is that language is always growing and changing. But it does it on its own, without our control. (Unless we’re France. France at least tries.) We may wish to eradicate the “n-word,” but we can’t. It’s less socially acceptable to use in polite company, but you know people still use it. Read the comments section on any social media post about President Obama if you don’t believe me.

The second thing is that at least Spoon Theory and language are entering the mainstream. People without invisible illnesses are at least getting a clue of what it means. They may not have the details right, but at least now when we explain it to them, they won’t be starting from scratch.

And after all, isn’t that how Spoon language started – as a way to begin a conversation on what invisible illnesses are and how they affect our lives? Not a secret language that only those who know the password and handshake can use.

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