My Experience Only. YMMV.

Posts tagged ‘working at home’

Shortchanged: Bipolar Disorder and Money

I don’t know any rich people with bipolar, aside from the celebrities who struggle with it and go public. There may be some out there – there must be, statistically – but I don’t know any of them. I’m relatively well off – home, car, most bills paid, work – but even I live paycheck to paycheck. And have lived no-paycheck-to-no-paycheck in the past.

Let’s face it, having bipolar is expensive. And not conducive to making money. Here are some of the hurdles that I’ve noticed.

Insurance. The biggie. Right now I have insurance and, thanks to the Affordable Care Act (Obamacare), it covers mental health conditions. My previous insurance, which was more expensive, and crappier, and came through my husband’s employment, did too, but not nearly as well.

So, I’m covered, but not all my doctors take my brand of insurance. Some of them will accept reduced fees (if you ask) or have a special self-pay rate. But even that doesn’t always help much. My previous psychiatrist charged me $95 and my current one $75 – and those are just for 15-minute med checks, not full 50-minute sessions. My therapist accepted $30 per for that, so I was lucky, but had no official insurance document stating that she had to give me that rate.

Medication. The other biggie. I am currently on four or five psychotropic medications, depending on how you count (and no, you don’t need to know what they are: http://wp.me/p4e9Hv-u1). One of them – you can probably guess which one – cost $800 per month when it was first prescribed to me. I got a coupon from GoodRx.com that brought it down to around $200 per month which was, if not exactly reasonable, more doable. Finally, a generic came out and the ACA kicked in, and I get the drug for $45 per month now. That would have seemed high at one time, but now sounds comparatively reasonable. But if you’re on a fixed income, watch out. Fixed income and no insurance, you’re screwed.

SSDI. Which brings us to the topic of Disability, the “safety net” that’s supposed to catch those of us who are so disabled by our mental (or physical) conditions that we’re unable to work. Good luck getting it. Most people who apply are rejected, sometimes more than once. Practically speaking, you need a lawyer to navigate the shoals for you, and one who works on contingency at that. The hoops and red tape are massive. If you’ve got depression, to pick just one example, cutting through and jumping through may be beyond your capabilities. You’d think they planned it that way, just to cut down on the number of claims they have to pay.

Mental illnesses are particularly difficult to get SSDI for. They’re “invisible illnesses,” not like blindness or paraplegia that one can’t help but notice. When and if you do get approved, the monthly payment is meager and fixed (see above), unless there is a cost-of-living raise which, given the current economy and political leadership, is increasingly unlikely.

Bipolarity. Then there’s the disease itself. Anyone with mania can probably tell you about the sometimes-ruinous spending sprees that accompany racing moods. Hell, I only get hypomania and I’ve got five custom-made dresses in my closet that I’ve never worn and now can’t because of weight gain from my psychotropics.

You’d think depression would not have much effect on your spending. But it does have a profound effect on your income. People with bipolar depression who can work part-time or from home are lucky. Others not so much. There was a period of several years when I was unable to work at all, and we ran through our savings and retirement accounts rapidly. My husband could still work, but one income quickly became insufficient to meet the bills. (Fortunately, my bipolar depression lifted enough that I’m now able to do part-time, at-home, freelance gigs, which are about as unstable as I am.)

Retirement. No IRAs left. No savings. That means Social Security, delayed as long as possible, and the aforementioned fixed income. Basically, I can never retire. I can’t afford to.

Frankly, I can’t see any of this changing anyways soon. Money trouble is just one of those things that you have to deal with along with your mental disorder. And there’s nothing like stress to make your symptoms worse.

From Panic to Manic to Proactive

Hypomania isn’t all bad. Right now I’m facing one of my worst triggers, and instead of retreating into depression, I kicked into hypomania. Then I harnessed as much of it as I could and channeled it to work for me.

Here’s the sitch. My longest and most vicious major depressive episode (which lasted literally several years, even when I was under treatment and on medication) was triggered by, among other things, massive financial problems. (There were other factors involved: health problems, family health problems, family problems, irrational thinking, strained relationships, and bad ol’ neurotransmitters.) I was unable to work. There was plenty of anxiety along with the depression, you can be sure.

So here I am again, almost a decade later, once again in dire financial straits. I’m able to work, but only part-time and telecommuting. Then one of my biggest, most reliable clients cut way, way back. I made the mortgage this month, but next month looks iffy at best.

In the past, this would have resulted in major mental symptoms, and physical ones as well. (Better you shouldn’t ask, but my digestive tract responds to stress in an overwhelming manner. I know, TMI.) I would be immobilized, unresponsive, and spend most of my days on the sofa when I wasn’t in the bathroom. I would abandon the financial problems – and myself – to my husband’s care, for as long as he could keep everything together. Until he burned out too.

During this new version of assorted crises, I seem to have a better handle on things, and I credit hypomania. I am trying to better the situation, though not yet particularly effectively, but steadily.

I am looking for new clients and more work from my old ones. I am looking for other sorts of telecommuting jobs, and even part-time outside work that seems to be within my modest-at-this-point capabilities.

(This process is hindered by the fact that all the job search engines are lousy. When I say I am a writer, I get leads for technical aerospace writing and service writers for car repair shops. When I say I’m an editor, I get invitations to become a driver for Uber. True story.)

I pursue these avenues every day. Soon after this post goes up, I have a networking “date” with a former client and a former co-worker.

And in the meantime? When the days stretch out with nothing happening and the sofa calling my name?

I blog. I work on my novel. And I take surveys.

Admittedly, none of these pursuits brings in mortgage-payment-sized money. But the surveys bring in a couple of dollars a day, which is pitiful, but helping with a getaway my husband and I planned before the finances went belly-up. (My husband is still working, but his wages alone aren’t enough to pay all the bills. We need both of us, a situation familiar to millions of people in the U.S., with or without mental illness.)

And, aside from the getaway, which it’s too late to cancel, we’ve instituted cutbacks. We typically spend way too much on food and now must revisit our newly married days, when we subsisted on mac-n-cheese and tomato sandwiches. It’ll be good for us, I tell myself. We could both stand to lose some weight.

I don’t know how long my “proactive hypomania” will last, when our financial situation will improve, or whether my energy level will survive after it does. Or, for that matter, whether we’ll end up eating cat food under the Third Street Bridge and fighting stray dogs for cold french fries.

But right now, for now, I’m dealing. And that’s something I couldn’t do before.

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.

Parts of My Life I Miss the Most

Last month I wrote about how bipolar disorder had cost me – well, not the ability – but the capacity to read (http://wp.me/p4e9Hv-qp). I am intensely thankful that the concentration, focus, and motivation to read have returned as my healing has progressed.

But there are some other things that are missing from my life that I wish desperately that I could get back. Or wish I had never lost in the first place. (Depression is very much with me right now, so forgive me if I dwell in the past with my failures a bit.)

First are friends. I’ve written about this before too (http://wp.me/p4e9Hv-2W), but the subject was brought home to me recently when I received a fuck-off letter from a former friend I was trying to reach out to, in hopes of reestablishing the relationship. One of her main reasons for cutting me off was that every time we went out, she felt it was “her and me and my misery.”

She did acknowledge that at times our friendship had been burdened by her misery too, but evidently that either didn’t count as much, or else mine lasted too long. (If it was too long for her, it was even longer for me.) I am very disappointed that, now that my “black dog” is smaller and on a leash, she found other reasons not to associate with me. To make it more ironic, she has been a therapist and now teaches psychology.

I also miss having a steady paycheck. My last 9-5 office job was over ten years ago, and since then my mental state has not allowed me to get and keep another such position. The security of knowing how much money I would have every month allowed me to plan.

And to travel. I really miss traveling. Admittedly, part of my inability to travel now is determined by my physical health. But my anxiety would make it just that much more difficult. Now I can barely get away for a weekend, and even then I must carefully monitor my moods, limit my activities, track my eating and sleeping, and avoid crowds.

One of my deepest regrets is that when I was undiagnosed and untreated, I couldn’t fulfill my potential. I attended an Ivy League university, but I can’t say I got out of it what I could or should have. I feel now that I skated by, impeded by many depressive spells, lack of focus and concentration, and confusion. I even took a year off to get my head together, but since that didn’t include getting help for my bipolar disorder, its value was questionable.

Lest this seem like nothing but whining (which my depression is telling is what it is), there are also some things that bipolar disorder has taken from me that I don’t miss at all.

Oddly, one of them is a 9-5 office job. While I do miss the steady paycheck, I absolutely don’t miss the things that came with it. Now, doing freelance work, I can fit my work around the things I need to do (like seeing my therapist) and the things I have to do (like slowing down when depression hits). I don’t have to get up at the same time every day and dress appropriately (if at all) and try to fit in and socialize with my co-workers. That was never easy for me and became nearly impossible after my big meltdown.

And, as much as I miss travel, I don’t miss business travel. Again, being “on” all the time, for days at a time, with no time or place to decompress, would be impossible now. Since we usually had to share hotel rooms, there wasn’t even a chance for any alone time, which I need a fair amount of. I could never get the hang of “team eating” either.

Finally, I don’t miss the boyfriend who took an already broken me and broke me worse. (I wrote about him in my post about gaslighting http://wp.me/p4e9Hv-pm.) My self-esteem was not great before the relationship, but afterward it went into negative numbers. Self-harm, self-medication, self-doubt, and negative self-talk were what I had instead. But Rex didn’t do it alone. He had my bipolar disorder there to reinforce his words and actions. And to not let me see what was happening.

Bipolar disorder is a balancing act, in more ways than one. It takes away good things from our lives. But my therapist reminds me that it also gives an opportunity – as I rebuild my life, I can choose which pieces I want to reclaim and which I want to discard. And the parts I can rebuild are what I should concentrate on.

And I will, once this spell of depression releases me.

 

 

 

 

 

 

 

I’m Not Introverted. I Just Don’t Want to Leave the House.

Maybe you would call me an introvert. I stay in the house for weeks at a time, never sticking my nose out into the fresh air. I wear pajamas all day, most days. My husband does the grocery shopping, picks up my prescriptions, and does most of the other errands.

I go out when I have a doctor’s appointment or when Dan entices me out with the promise of a restaurant meal.

I don’t consider myself an introvert.

I do consider myself a social person.

Why, then, do I stay indoors?

First, because my bipolar disorder makes me sensitive to noise and crowds. Technically, I think this is more agoraphobia than introversion. I can handle being in small groups of people or audiences, but hundreds milling around, as at a mall, make me panicky. And forget places that are both noisy and people-y, like Chuck E. Cheese or other family-intensive restaurants.

Second, I like to be social – on my own terms. That largely means Facebook, Twitter, LinkedIn, various online bipolar support groups, IM, email, Skype, and the good old-fashioned telephone. In the years since I’ve been on Facebook, for example, I’ve connected more deeply with old friends and coworkers, reconnected with old schoolmates and Girl Scout troop members, gained new relationships with friends-of-friends, and discovered things I never knew about my acquaintances. I keep up with birthdays; look at baby, travel, and pet pictures; and cheer on accomplishments, as I would in person. (Except for the hugs. Virtual hugs are just not the same. But my husband takes up the slack there)

Most of all, I stay inside because I can. My husband enables me in this, as when he does the grocery shopping. We tried splitting the shopping, but even with the little runabout scooter-with-a-basket (mobility issues), I was overwhelmed and exhausted after shopping just one-half of the store.

I’m able to work, at least some, and the work I do is conducive to telecommuting. I can sit in front of my keyboard and monitor, in my pajamas, and still be a useful, productive member of society. I have clients and interact with them in the aforementioned ways.

I haven’t had an assignment that involves leaving the house in years – not even to do research. I used to have to visit libraries occasionally, and while they’re not known for being noisy and people-y, Google and the Internet put virtually any information I need right on my screen or hard drive.

Admittedly, getting out into the fresh air would be good for me. We live in a nice secluded area that would be good for walking, and there are any number of parks nearby, if I want variety. I know that going out and getting at least a small amount of exercise would be good for my bipolar depression, but I haven’t been able to force myself to do it yet. Going outside to walk involves getting out of my jammies into real clothes, and possibly taking a shower, either before I leave or when I get back. And many of you know what a challenge showers are for people with depression, bipolar or otherwise.

But again, this is a symptom of my bipolar disorder and the immobility it causes, rather than introversion. I’m not afraid of meeting people while out walking, or even having conversations with them. Usually “hi” is all that’s needed in these situations, and I have the ability to make small amounts of small talk appropriate to the occasion. (“Sure is windy today.” “Are those shoes comfortable?”) Since I seem to be riding a hypomanic swing these days, perhaps I’ll be able to get out and walk occasionally. I know my husband would heartily endorse the idea and most likely go with me to offer me encouragement.

Bottom line? I can go out amongst people if I want to. I just usually don’t want to.

Can I? Can’t I? Bipolar and Business

I work freelance at writing and editing, and as many of you know, that life is fraught with insecurity. How much work will I get? How much will I be paid for it? Will the check be enough to cover the mortgage and the health insurance? Anything else, like light and cable and phone, which I need in order to work from home?

Since  I’m bipolar, these questions are laced with more than the usual amount of anxiety. Especially since the progression toward my last major breakdown was a lot of what caused me to lose that 9–5, well-paying job. My attendance became spotty, my attention refused to focus, my relationships with coworkers went downhill, my evaluations took a turn for the worse, and I bailed.

I stayed immobilized for a long time, applied for disability (didn’t get it), then embarked on freelance work.

I’m much more stable now. I’ve have published this blog and my other one for over two years, and proved to myself that I can attend business meetings, at least once in a while. My paying work has built up to the point where we can at least live paycheck to paycheck, but not much more. Time to spread my wings?

So I started looking around for other jobs, in addition to my faithful, steady client who has sustained me for years now. First I asked them if they could send any more work my way. Then I started expanding my platform, as we say in the writing biz.

I joined LinkedIn. And there, one day, I saw a listing for someone who needed an editor. One with exactly my skillset. Precisely my experience. The kind of work I love to do.

But.

It was full-time, likely high-pressured, and 45 miles away (during rush hour). I knew those factors would make it impossible for me to succeed at the job, even if I got it.

But.

I wanted it. I wanted to have back the things I lost after my breakdown – my competence, my confidence, my pride. Oh, and the money too.

But.

Much as I wanted to, I couldn’t let myself apply for it. I didn’t want to trigger the kind of meltdown I had before. I didn’t want another period of literally years when I could do nothing – not work, not take care of myself, not cook, not read. Nothing.

So, with reluctance, I let the opportunity pass by. I went back to my blog posts and my irregular freelance work. I occasionally do some non-paying work for organizations like the International Bipolar Foundation (IBPF), or Sheknows.com, TheMighty.com, and even redtri.com. I lined up a gig editing a friend’s dissertation.

Then, as it sometimes happens, another opportunity appeared – a part-time paid position with a company that already knew my work. Steady work. Pay. Work at home. All this could be mine if I applied, passed the editing test, and was able to work the number of hours per week I rather optimistically said I could. I’ve taken the test (it was two hours long and grueling, the kind I used to give to other people). And now I wait, more or less patiently, never my best quality.

And while I wait, I wonder. Am I even capable of doing half-time paid work at home, plus my other freelance assignments, plus my blogs, plus the novel I’ve written about 1/3 of? Can I do the part-time job (if I get it), without my disorder screwing me up too badly to do it or anything else well? Is hypomania tricking me again? Do I have to give something up to get something better? Will it really be better?

The answer to all those questions is, “I don’t know.”

My disorder surely lost me the 9–5 job I once had. It made me give up the idea of trying for that similar job that seemed “just right.” But at least now I have some ambitions again.

Can I? Can’t I? This balancing act of higher ambitions and lowered expectations is delicate.

 

 

 

 

Blogging While Bipolar: What I’ve Learned

Next month, this blog will be three years old, an unruly toddler of a blog with jam on its face and a sticky plush animal grasped in its fist. Except for one dry spell of about a month during the first year, I have posted every week in both this and my general purpose blog, Et Cetera, etc. (janetcobur.wordpress.com).

My husband often tells me that he’s proud that I am doing this and that I have stuck with it so long and faithfully. (He doesn’t often read my posts, but that’s another matter.)

nightblogWriting while bipolar is not always easy, but blogging has taught me a few things about myself.

Blogging is a substitute for going outside and having a social life. While it’s generally true that my disorder has abated over the years, at least from its worst, I am still unable – or perhaps unwilling is more accurate – to go outside for more than a doctor’s appointment, or a brief errand and lunch with my husband. But I am still connected to the outside world through my blog. I have friends, I have conversations, I get feedback. I have special blogging friends like Bradley, Raeyn, and Dyane. (I also live vicariously through Facebook, but that’s another story.)

I need structure, and blogging gives me that. I used to post randomly, whenever I felt like it. Pretty quickly I discovered that Sunday was the day when my blog got the most traffic, so I made that my official blog post day. Working at home as I do, I tend to lose track of where I am in any given week. Is it Tuesday? Thursday? It’s hard to tell. But having a writing schedule clears that up.

On Monday and Tuesday I pre-write – think about articles I’ve read or conversations I’ve had and jot down a few titles or ideas or URLs. On Wednesday I begin writing. My goal is to have a rough-ish draft by the end of Thursday and a nearly finished one on Friday. Friday and Saturday are for tweaking the writing, selecting a visual, and tagging. Then Sunday, I proof and post. (I also tweet a quote from my most recent post on Tuesday and a quote from an earlier post on Wednesday, plus a “coming attractions” post on Friday announcing Sunday’s topic.)

It’s a loose enough schedule that I can build in actual paying work around it.

For me, blogging and other forms of writing are better than journaling. My journaling quickly turned into whining. It was boring, even for me. I need real content to interact with, whether that be my blogs, a memoir, or the mystery novel I’m working on. Writing engages and invigorates my poor broken brain, giving it something to do other than wallow or turn to mush.

Even when I think I can’t write, I can still blog. Back when I was able to work full-time, I wrote and edited for magazines and textbooks. I used to boast that I could write 1000 words on anything. Blogging is more forgiving. I can stop at 500 words if that’s all I have to say. I can pick my own topics instead of writing to order based on someone else’s priorities. And that schedule I mentioned? It’s not an actual deadline, so I don’t have to worry about it whizzing past. When the pressure’s off, I can almost always make my Sunday goal.

Blogging validates me. I have two degrees in English (one from a pretty classy university) and worked in educational publishing for about 20 years. Then my brain broke and it all went away. Now that I’m writing regularly, I feel that in some way I’m using both my education and the skills I’ve built up.

By blogging, I prove to myself that bipolar disorder may have taken away some parts of my life, but it can’t have everything.

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