My Experience Only. YMMV.

Bipolar Me, Looking for Work

I have been very fortunate over the last few years in that I have been able to work and that, combined with my husband’s far-from-large – but steady – paycheck, we have been able to pay the bills. Now that seems to be changing.

After my last big emotional crash, I was unable to work at all, and after my husband’s major burnout, he was not able to work for a while. We ran through our IRAs and ended up in the situation where we are now.

I do writing, editing, and proofreading jobs from my home computer. It is really ideal, in that the projects usually come sporadically, with time in between them, so I seldom require more energy than I have available. I do not have to go out very much, or dress up very often and can work in my comfort zone, in my comfortable study, in my comfy pajamas. In these respects I am lucky or blessed, or however you wish to define it.

But clients have become a little thin on the ground lately. And I am afraid. I fear both a financial crash and an emotional one. The two are not unrelated. Finances and dealing with them were two of the largest triggers that started the major depression-plus-anxiety that swallowed me up for quite a few years.

Now I am feeling the pinch again. I felt it back in August, when my “proactive hypomania” helped me get through (https://wp.me/p4e9Hv-y4). But one can do that only so many times. Or at least I can’t summon the necessary mood at will. (Surprise, surprise.)

I have a writing project now, but it will run out in January. I have another client, but work from them is not as consistent as it used to be. We are already behind on some of our bills, including the mortgage.

So I am looking for more work, and it is scary.

The kind of work I’ve been doing is ideal, even when my symptoms increase. It lets me work around the deficits that bipolar heaps upon me. If I have a project due Monday, I can work during the weekend. If I have insomnia, I can work at night. If I am immobilized, I can usually schedule my deadlines so they don’t all hit at once.

I try to network, also at home from my computer, but that lets out job fairs and professional organizations and groups inhabited by people. I should put together a resume and sample packet and then try to figure out whom to send it to. Which is kind of like throwing spaghetti at the wall and seeing if any of it sticks. And the impressive kind of packet – slick, personalized, colorful, foil stamped, business-carded, sample-stuffed, stationeried – costs money to prepare, which of course is itself a problem since you have to spend it before you get results, if any.

So I have signed up with a number of sites that provide leads on jobs, and some of them don’t even want me to drive for Uber or move to Massachusetts.

Each time I apply, I ask myself, “Can I really do this job?”

Sometimes the answer is “Probably not, but I’m going to apply anyway.” Those are the 9-to-5 office jobs that would require me to upgrade my wardrobe just the teensiest little bit and try to keep the depressive phases under control if not totally under wraps. I have serious doubts about my ability to be “on” for eight hours a day, five days a week.

The Americans With Disabilities Act says that certain categories of people are entitled to “reasonable accommodations” in order to fulfill their job requirements. For someone like me, accommodations might include flextime, doing part of my work at home, time off for doctor appointments, and the like. If I got one of those jobs, I would have to reveal my mental disorder in order to receive accommodations, and I would have to decide whether to speak up about it before or after I got the job. Probably after.

The not-quite-as-frightening jobs are part-time ones, like working the circulation desk at the local library. They have their drawbacks too, including the same ones as full-time jobs, with less pay besides. Would it provide enough income to make a difference? Maybe not. Would I be able to do a part-time job and still squeeze in a little freelance work? I just don’t know. The idea is still daunting, to say the least.

(Another potential solution would be for my husband to get a better-paying job, but he is in the process of changing his meds, so that doesn’t seem likely either, at least for now.)

I know this seems like a better class of problem than many people with bipolar disorder have. Trying to keep up the mortgage payments is better than living under the Third St. bridge, fighting stray dogs for cold french fries. My husband’s job may be low-paying, but at least it’s steady and has a health insurance plan. I am truly grateful for these things.

And I am truly scared nonetheless. And tired. And sliding back down into depression.

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?

 

 

 

 

 

You know I bitch a lot about the science and research associated with mental health in general and bipolar disorder in particular. It seems like I bitch about nearly everything I read in the press. Here are some examples:

I have been told that I have a weak understanding of science and the scientific process. It’s true that I have no degree in any science, not even the “soft” science of psychology. Yet I persist.

Some of my major objections (if you don’t want to read the above-mentioned posts, which I fully understand) include: that article headlines seldom match the stories they’re attached to; that too many qualifiers like “might” and “may” occur in the stories; that the research is still in the rats-and-mice stage, which is a lo-o-o-o-ng way from human trials or public availability; and that many reports contain yes-it-does/no-it-doesn’t debates.

Most of all, I hate “false hope” headlines that I don’t believe will ever trickle down to the bipolar-person-on-the-street. Certainly not in my lifetime, and maybe never. And if they should become available, the cost will be prohibitive. I can’t believe that many of us will have the wherewithal (meaning both access and money) to avail ourselves of the new solutions. I mean, can you really picture the average bipolar patient getting genetic testing or fMRI? Or insurance paying for it?

Then came the headline “Simple EKG can determine whether patient has depression or bipolar disorder” (https://www.eurekalert.org/pub_releases/2017-11/luhs-sec112017.php). Published by Eurekalert! (which, despite its name, appears to be an aggregator of science press releases from sources such as universities and labs around the world), the story reports on work done at Loyola University Health System.

For me, the take-away points are these:

“Bipolar disorder often is misdiagnosed as major depression. But while the symptoms of the depressive phase of bipolar disorder are similar to that of major depression, the treatments are different and often challenging for the physician….

“The study found that heart rate variability, as measured by an electrocardiogram, indicated whether subjects had major depression or bipolar disorder….

“Dr. Halaris said further research is needed to confirm the study’s findings and determine their clinical significance.”

And yes, this does feed into my dislike of small studies (under 200 participants) that admit “further research is needed.” But this one, it seems to me, could actually be of some benefit.

Misdiagnosing bipolar disorder as major depressive disorder is a real and perhaps not uncommon thing. I was diagnosed with major depression for decades before a psychiatrist realized I had bipolar disorder. The treatment I got in those decades helped, but the treatments since have helped more.

And I can see a 15-minute, three-lead EKG becoming more available, at least to those of us who still have insurance (a dwindling number, to be sure). In cases like mine, it could save years of incorrect diagnosis and less-than-effective treatment.

Of course, here I am using the hated word “could.” But I take heart from the fact that it is a noninvasive procedure, there are plenty of potential test subjects, the expected resulted is focused on a single, more manageable result – misdiagnosis of one condition – and the test uses a relatively simple, already available technology.

It won’t help me, of course, since I already have my diagnosis, but I think of the people – even people I know – who could benefit from it, and in the not-too-distant future. Would the person who swings from depression to anxiety and doesn’t respond to the usual medications for depression actually have bipolar 2? Would the one who has wide mood swings and a diagnosis of OCD prove to have both, in reality?

Who knows? Not us, at the moment. But in the near future? This time I think there really is hope.

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

 

 

The Other Holiday

I’m not going to write the standard “Surviving the Holidays” post this year. You all probably know what that one says: Self-care, self-care, self-care. Avoid toxic people, and if you can’t, get away from them as soon as possible. Don’t drink. Take your meds. Make sure you’re not alone unless that is what you truly want. And if you don’t know these things, you can read them in dozens, if not hundreds, of places. There’s not a lot I can add to that.

No, I’m going to write about the other holiday – the one we all have. The one that happens to fall – for me – right during the other holidays. The birthday. I wrote earlier this year about birthdays, and parties, and surprise parties in particular (https://wp.me/s4e9Hv-surprise), and I also wrote about the low-grade depression that dogs me this year (https://wp.me/p4e9Hv-AC). The two, I suppose you’ve guessed, are not unrelated.

After I experienced a severe trigger at a birthday party while in my teens, I tried to disown my birthday. In my dysfunctional way, I told people that it was on March 1, rather than in December. This was a stupid coping mechanism, not unlike the time prescription Ibuprofen caused me stomach trouble in college and I sat by the door in my classes, hoping that the burping would be less noticeable there. Don’t ask me why. Irrational thinking, I guess. My birthday didn’t go away (the burping didn’t either), my family still baked me cakes, and I still got presents or cards.

Eventually, I reclaimed my actual birthday. As the years went by and my friends scattered and my general holiday depression got more debilitating, I barely celebrated at all. Now it’s pretty minimalist – a meal out with my husband, a non-wrapped present or two, and on with the regular day. Dan tries to make it special, God love him, but my definition of “special” is telling the wait staff not to gather around me and sing. Then Facebook came along and now I have the opportunity to count the number of people who wish me happy birthday. As excitement goes, it’s not much.

I can’t say my lack of enthusiasm for birthdays is limited to myself, either. On Dan’s birthday, we have the same sort of celebration, except with fewer presents. (Dan stashes away little gifts for me all year long and often gives me things he’s bought back in July. I lack the wherewithal, in terms of energy, to do likewise.) Online shopping has made things easier, but Dan brings in the mail, so he usually has an idea what he’s getting, based on the size and return address of the package.

In a way, I suppose it’s more efficient to have my birthday tucked in among the other holidays so that one gray fog can cover them all. I could also be experiencing a bit of Seasonal Affective Disorder, but I’ve never been diagnosed with that, so let’s stick with what I know I’ve got. (I’ve tried using natural sunlight bulbs, but I really couldn’t notice any difference.)

Do I ever get hypomania at the holidays? Rarely. Although there was that one Christmas when I got Dan socks and underwear and wrapped each sock and t-shirt in a separate, different-sized package.

But we were talking about birthdays (or at least I was). Maybe it’s aging, and maybe it’s my bipolar disorder, but I’m content these days just to let birthdays slide by with an emotion that ranges from meh to Bah, Humbug, depending on the year.

I know, I know: self-care, self-care, self-care. It’s not just for Christmas anymore.

 

 

Prayer and Bipolar Disorder

My mother believed in the power of prayer, and thought I should do more of it. I can’t say she was wrong. She prayed for self-improvement (for God to take away her bitterness at someone) and for social issues (returning prayer to schools). I don’t know whether she ever prayed for an end to my bipolar disorder (she kept most of her praying private between her and God), but I never have. I don’t think it works that way.

So, what do I think about bipolar disorder and prayer? I think there are many things about bipolar disorder that you could pray about.

You could pray that science finds better treatments for bipolar disorder.

You could pray that you find a support system that helps you (or give thanks for the one you already have).

You could pray that you find a therapist, or a therapy, or a psychiatrist, or a medication that helps you. (Though I would recommend putting some effort into this one yourself as well as praying.)

You could pray that you have the strength to get out of bed in the morning or to sleep at night.

You could pray for understanding of what you’re going through – by another person, by an employer, by the world at large, or even by yourself.

You could pray that you not do too much harm while in the grip of mania or depression.

You could pray that you will recognize when someone is reaching out to you, and that you will have the ability to accept.

You could pray that you have the courage to reach out to someone else, and the wisdom to keep reaching.

In my opinion, what you can’t do is “pray away” the bipolar disorder. If you’ve got it, you have to find a way to live with it. If prayer helps you do that, more power to you. But, again in my opinion, prayer is not a cure for the disorder. There are some things that are meant for religion or philosophy to make better, and things that science has a better shot at.

You can point to various miraculous remissions of cancer or other diseases, or make the argument that removing demonic possession would now be called healing of mental illness. And if those give you comfort or hope, again, good for you.

St. Dymphna is the patron saint of the mentally afflicted (though personally, I think she should be the patron saint of abused children). If she, or God, or some other higher power of whatever religion or denomination or sect can lessen your suffering, go for it.

I just don’t believe that you – or I – personally will be cured of bipolar disorder by prayer.

Feel free to disagree with me.

Mental illness is not just an American problem. In fact, it’s a problem around the world, and perhaps much more acute in other nations, especially those plagued by poverty.

There’s no way to know for sure, but many – perhaps most – of the world’s mentally ill are undiagnosed, untreated, ignored. Because what do you do when you live where there’s no psychiatrist? No therapist. No medication. No help.

Your family may support you, shelter you, or shun you, depending on their financial and emotional resources and those of the community. But for many people, there is simply nothing.

Psychiatrist Vikram Patel, one of Time magazine’s 100 Most Influential People for 2015, is working to change that.

As a recent profile in Discover magazine put it, Patel and others like him have set out to prove “that mental illnesses, like bipolar disease, schizophrenia, and depression are medical issues, not character weaknesses. They take a major toll on the world’s health, and addressing them is a necessity, not a luxury.”

In 2003, Patel wrote a handbook, Where There Is No Psychiatrist: A Mental Health Care Manual, to be used by health workers and volunteers in poverty-stricken communities in Africa and Asia. A new edition, co-written with Charlotte Hanlon, is due out at the end of this month.

Patel, in his first job out of med school, in Harare, Zimbabwe, says he learned that there wasn’t even a word for “depression” in the local language, though it afflicted 25% of people at a local primary care clinic. There was little study of diagnosis and treatment in “underserved areas.”

Later epidemiologists learned to their surprise that mental illnesses were among the top ten causes of disability around the world – more than heart disease, cancer, malaria, and lung disease. Their report was not enough to spur investment in worldwide mental health.

Patel developed the model of lay counselors – local people who know the local culture – guiding people with depression, schizophrenia, and other illnesses through interventions including talk therapy and group counseling. By 2016, the World Health Organization (WHO) admitted that every dollar invested in psychological treatment in developing countries paid off fourfold in productivity because of the number of people able to return to work.

One objection voiced about Patel’s model is that the real problem is poverty, not depression or other mental illness. The argument goes that the misery of being poor, not a psychiatric illness, leads to symptoms and that Westerners are exporting their notions of mental health to the rest of the world, backed up by Big Pharma. Patel responds, “Telling people that they’re not depressed, they’re just poor, is saying you can only be depressed if you’re rich … I certainly think there’s been a transformation in the awareness of mental illnesses as genuine causes of human suffering for rich and poor alike.”

Of course the problem of underserved mentally ill people is not exclusive to impoverished nations. There are pockets in American society where the mentally ill live in the midst of privilege, but with the resources of the Third World – the homeless mentally ill, institutionalized elders, the incarcerated, the misdiagnosed, those in rural areas far from mental health resources, the underaged, the people whose families don’t understand, or don’t care, or can’t help, or won’t.

I don’t know whether Patel’s model of community self-help can work for those populations as well as they do internationally. This is not the self-help of the 1970s and 80s, when shelves in bookstores overflowed with volumes promising to cure anything from depression to toxic relationships. It would be shameful if the rich received one standard of care for mental health problems, while the poor had to make do with DIY solutions, or none.

But, really, isn’t that what we’ve got now?

 

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