My Experience Only. YMMV.

Posts tagged ‘Spoon Theory’

The Golden Glow and the Spoons

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Photo by Aphiwat chuangchoem on Pexels.com

Hypomania is as insidious as it is enjoyable.

I remember when I quit my 9–5 office job to go freelance. I remember when I made the decision. I had gotten my first bad review, ever, shortly after disclosing my bipolar disorder to my new boss.

I remember driving around shortly thereafter, running errands in the middle of the day. I felt the warm, golden glow that goes with either happiness or hypomania. I could wake when I pleased and work when I pleased. I could run those errands when I wanted. I could take my mother to her doctor’s appointments whenever I needed to. I could make and go to my own appointments as necessary.

Best of all, I felt as though I had enough spoons to do all this. I was able to keep up with the work and the errands and the appointments and, hey, if I got tired I could take a nap in the middle of the day.

But.

Eventually the glow wore off and the spoons ran out. Hypomania dumped me back into the depression I was oh-so-familiar with. I had more work to do and less energy to do it. My mother’s problems increased and I had to take over her finances as well as my own. I was teetering on the edge of a major depression, and then I fell off that cliff.

Anymore I don’t trust hypomania. First of all, I can’t distinguish it from actual happiness, competence, or satisfaction. I always question its sincerity and watch out of the corner of my eye for the coming crash. In other words, when I’m happy I can’t even enjoy happiness without reservation.

One way I keep track of my hypomania is by being aware of the number of spoons I have. If I’m flying on a hypomanic cloud, I feel replete with spoons. It never occurs to me that I will run out. When I’m experiencing garden-variety happiness, I still suffer at some point from lack of spoons. No matter how many pleasing things are scheduled for the day, I know deep inside that I cannot simply dive into all that bounty. My joy is measured out, as the poet said, in coffee spoons or in this case metaphoric spoons which I always visualize as small white plastic ones.

Stability for me does not mean that I can ignore my supply of spoons, either. I may be on an even keel, able to do most of what I want, but inevitably the spoon depletion hits, sooner or later. There is simply no more that I can do, much as I want to. And if I force myself past that point, I will surely pay for it in exhaustion, irritability, or isolation.

Spoons, therefore, run my life. If I am too happy, I have to watch for incipient spoon depletion.  If I am level, I know that I must still keep track of the spoons I use. And if I am low, my spoons can disappear altogether, to the familiar point of not being able to get out of bed.

I think the trap of hypomania is the worst of all. On a high like that I can lose track of my spoons – even forget that they are necessary. Fortunately, I don’t get the full-blown version of mania. I fear I would squander spoons recklessly, leaving me a terrible absence of any.

Spoons are a useful way to explain the energy demands of chronic and/or mental illnesses. My husband and I speak spoonie shorthand. But I wish I could experience that golden glow, that haze of happiness, that feeling of floating, without having to keep one eye on the spoon-meter.

 

Bipolar Travel Tips

photo by Dan Reily

Last week I blogged about “Running Away From Home” (aka the geographical cure) https://wp.me/p4e9Hv-F9. This week I want to talk about actual travel – for business or pleasure. Travel was one of my greatest joys and one of the things I’ve missed most since bipolar stole so many parts of my life. I am delighted to be able to say that I am beginning to reclaim it.

I know that many people aren’t able to travel at all because of their bipolar disorder, but for those who can, here are some tips to make it easier.

The basic thing to remember while traveling is this: self-care. You may find it hard to do while on the road, but it is essential to keeping yourself functional. Just give yourself permission to do the things you have to do. And find ways to avoid the things that trigger you.

Business Travel

Business travel is the most difficult, and something I’m no longer able to do at all. Oh, I can drive an hour for a half-day training session, but I want to be back in my own house and bed when it’s over with. But the kind I used to do – four to seven days, with coworkers (sometimes in shared hotel rooms), and especially with booth duty – are simply beyond me. There’s no time or space for self-care.

If you must travel on business, however, I recommend bringing along a comfort object (https://wp.me/p4e9wS-k9) such as a small plush animal, a favorite pillow, or toiletries that have a soothing scent like lavender. Fuzzy slippers may have to do as a comfort object if you have to share a room. It’s also a good idea to bring along portable snacks such as nuts or raisins in your purse or briefcase, as regular meal schedules are often thrown off by meetings and other events.

“Me” time is hard to arrange, but do try. One trick that works for me is to find an unused function space and sit there with a pad of notepaper. Zone out. Then if anyone comes looking for you, claim you were just consolidating your notes.

Visiting Relatives

Avoiding arguments is one of the particular challenges of visiting relatives – particularly in-laws.

On one of the first visits I made to my in-laws’ house, I noticed that they shouted a lot. When that happened, I would go into the kitchen and make myself a cup of tea. That’s a strategy I have often used. It’s also a grounding method I can use when things are spinning out of control. When everything around me is chaos, the simple, familiar, soothing action of heating a pan of soup or a teakettle can bring me closer to stability. Whether I really want soup or tea is not the question.

My husband noticed that I kept skipping out to the kitchen and asked why I kept making tea. “Because you’re all shouting at each other,” I replied.

“No, we’re not,” he said.

“Listen to yourselves.”

Just then an argument broke out over where to go to get some sandwiches. “You take the 422 to Souderton, then turn…” “Nah, you follow Cowpath Road then cut over to the 309. That’s shorter.” “But there’s more stoplights!” With each comment, the volume grew. Dan and I went out and got the sandwiches and when we got back, the family members were still arguing about the best way to go. Dan had to admit that I had a point. He just couldn’t hear it until I shifted his perspective.

Another technique you may find helpful when hit with nosy questions from relatives is the “Boring Baroque Response,” described here – https://wp.me/p4e9wS-cY.

Leisure Travel

My friend Robbin says that when you travel, the only things you really need to have in your carry-on are your meds and some clean underwear. Anything else you can buy when you get there if your luggage doesn’t manage to arrive when you do. It’s also good to talk to your pharmacist beforehand and make sure you have enough meds for the scheduled length of the trip. (Do not do what I did and take your entire supply of meds and then leave them at the bed-and-breakfast.)

Once I went to DisneyWorld https://wp.me/p4e9Hv-2K. (Okay, twice, but the first time was epic.) Surviving it was an exercise in self-care. The things I learned there are applicable to almost any travel situation.

It helps if you go with a person or people who understand your disorder and your needs. When you’ve exhausted yourself, it’s good to have someone who can think of options – “Of course, we can go back to the hotel now, if you want, or we could sit in this café and have a cold beverage while you rest your feet for a while.”

The point is, you don’t have to go on what a friend calls the Bataan Fun March – you don’t have to ride every ride, see every scenic overlook, visit every church or castle. Give yourself permission to take a nap or read a book or lounge around the pool, if that’s what you need to do. (If you’re on a guided tour and want to skip an event, let the tour guide know, so the head count doesn’t come out wrong after an event or stop.)

Finances tend to prevent the kind of leisure travel I used to do, but at least now if I can ever afford it, I can also survive it.

 

Is My Pain as Real as Yours?

The other day I got a comment on a post I wrote a while back called “Who’s a Spoonie?” (https://wp.me/p4e9Hv-h6).

The commenter said that I was wrong to use the term “Spoonie” for those with mental illnesses. The kinds of disorders that merited the appellation “Spoonie” were only those that involved a “physical debilitating condition where pain and fatigue play major roles.” That I am not a Spoonie. That the language is not mine to use. That I am a part of the problem.

Let’s take a closer look at some of those assumptions.

Mental illness is not an invisible illness.

I wrote about that, in a post called “Is Bipolar Disorder an ‘Invisible Illness’?” (https://wp.me/p4e9Hv-gI). Disabled World (https://www.disabled-world.com/disability/types/invisible/) seems to think it is. Their definition specifically includes mental disorders:

These [mental] diseases can also be completely debilitating to the victim, and can make performing everyday tasks extremely difficult, if not impossible.

Bipolar disorder and depression are included in their partial list of “invisible illnesses.” And if you want to talk about “everyday tasks,” consider the number of bipolar and other sufferers who can’t get out of bed, can’t shower, can’t leave their homes, can’t work.

The condition must be physical.

To the best of our current knowledge, bipolar disorder and many other mental illnesses spring from glitches in the neurotransmitters in our brains. The brain, a physical organ. Neurotransmitters, a physical substance.

Pain and fatigue are required to play major roles.

Well, I’ve written about that too, in a post called “Depression Hurts” (https://wp.me/p4e9Hv-6Z).

My head and eyes hurt from all the crying spells. My back hurt from lying in bed all day. I had painful knotted muscles from the anxiety that went with the depression. I had intestinal cramps because my overactive nerves led to irritable bowel syndrome. I had headaches and eye strain from the over sensitivity to light and noise. And I had the general flu-like malaise that is practically the hallmark of depression. You know the one. Every bone and muscle aches, but you can’t think why.

Were these aches and pains psychogenic? Undoubtedly some of them were. But others, like the irritable bowel, were all too demonstrably physical phenomena.

Oh, and are they chronic? I’ve lived with them all for years. Not all at the same time, maybe, and not without times when the pain let up. But are all Spoonies required to be in constant pain and fatigue? Again, Disabled World says not.

The language is not mine to use. 

Sorry, but language doesn’t work that way. Once a word is released into the wild, it goes where it wills, acquiring new usages and new meaning. And “Spoonie” is certainly out in the wild. The essay that first defined it is all over the Internet. The suffix -holic has escaped from the word “alcoholic” and is now used for dissimilar ideas including “shopaholic” and “chocoholic.” Can we say, “No, you mustn’t do that. It must be reserved for alcohol addiction”? We might, but it’s not going to happen. Trust me on this. I have some training in linguistics.

I am part of the problem.

I suppose so, if you believe there’s actually a problem. In my post on Spoonies, I asked:

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.

Obviously, opinions on the subject will vary, and mine is only one among many. I cordially dislike exclusionary language. Does anyone else want to weigh in?

Dear Bipolar Disorder

Dear Bipolar Disorder,

We’ve had a relationship for decades now, though it’s one I never chose. To tell the truth, I can’t even remember when we met. Gradually, you just moved in. So I guess we’re stuck as roommates for the rest of my life. You can’t break your lease and I can’t move out. That being said, there are some things I need to talk to you about. We’ve never been friends. We never will be. I have some issues with you; there are compromises we need to make.

I’ll take my meds faithfully, if you keep working with them. By that I mean no major depressions of longer than a week and no panic attacks while I’m trying to sleep.

I’ll pay for those meds, as long as you back off enough to let me keep working and earning money and paying for insurance. Just leave me enough concentration to do that and to read, and I’ll be satisfied.

I won’t go to Chuck E. Cheese or Cici’s Pizza or shopping at a mall anytime after Thanksgiving, if you will let me go out at other times to other places without getting your figurative undies in a bundle.

I will try to minimize the stress in my life (see above), if you will cut out the physical symptoms when there is stress anyway. You know the ones I’m talking about. Ick. Just ick. I hate cleaning up after you.

And can we talk about spoons? I know you only give me a limited number per day, but it would sure help if I knew what that number was. Is there any way you can be more consistent? If I have to borrow spoons from the next day or force myself to attend to some vital call or lengthy errand despite not having spoons, I promise to spend the next day in bed, just to satisfy you.

Please, if you can, give me some non-anxiety-laden hypomania so that I can go out and enjoy things with my husband and friends. If you agree to this, I will occasionally let you buy things off the Internet, for $20 or less.

And while we’re on the subject of enjoyment, I would appreciate it if you would give me back my libido. So would my husband. I know you don’t take orders from him, but it would be esteemed a favor.

Don’t even talk to me about hurting myself. I won’t listen. No matter how loud you get.

Don’t get between me and my friends. You’ve done that too often already and I just can’t put up with it anymore.

No more screwing with my memories. I’ve already lost enough. You can keep the ones of everything stupid I’ve ever done, but I will not watch when you push play on my internal video playback.

Now that I’ve finally got some self-esteem back, you just keep your claws off it. I need it and you don’t.

No dogs allowed. Especially large Black Dogs.

Oh, and tell your buddy Depression to leave my husband alone.

No love,

Me

 

 

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.

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