My Experience Only. YMMV.

Posts tagged ‘working at home’

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.

Work Hacks

Yay me! I just finished a big project (or at least the first phase of it) for which I will be paid actual money!

I am very fortunate/grateful that I am able to do freelance work at home, on my own schedule (mostly), using my education and skills, in my pajamas. Telecommuting is so way cool!

I can’t work an eight-hour day in an office any more (and likely won’t again). I can only concentrate for a max of three hours at a time, and some days not even that. Occasionally, if there’s a tight deadline, I can manage two sessions, or one and a half.Just Get Through It message on a dry erase board encouraging you to stick with your project or challenge during a stressful time in your work or life

Of course motivation is a factor. Deadlines and money are two really good ones. But sometimes I have to force myself – or trick myself – into doing actual work. This was true even when I did work in an office.

Anyway, here are some of my techniques – work hacks, as I guess they’re now called.

Taking breaks. Now of course, I can take breaks whenever I want, from a quick game of Candy Crush to an actual nap. My brain and body let me know when it’s time. They just crap out.

When I worked at the office, I tried taking crossword puzzle breaks at my desk. But apparently smoking was the only permissible break activity. Hiding in the bathroom didn’t work. People were known to track me down and ask questions anyway. (“Do you mind if I wipe and flush first?” Sarcasm seemed called for.)

When I got twitchy, I walked around the third floor or even more than one floor until I calmed down. The trick is to carry a clipboard or a few manila folders and walk sort of briskly so it looks like you’re going somewhere and doing something. It works best if the office has more than one room.

Pretending to work. I developed this technique at the office, but it can also be used at home. I would say to myself, “I don’t know how to get started. I’ll just write one sentence, so if someone walks by my cube, it looks like I’m working.” It was surprising to find that once the first sentence was on the screen, I knew what the second one should be – or that the first one was horrible and I could revise it, which also looked like work. Once I built some momentum this way, I was rolling. I don’t have anyone looking over my shoulder now, but the idea is the same – one sentence is the minimum, then see what happens.

Bribery and rewards. These are actually more or less the same. If I do X amount of work, I can check my email or eat a cookie or call a friend. I get to feel virtuous for working and satisfied by the little treat.

Forcing myself. If I’ve got a really tight deadline, I have to apply some internal pressure, especially if it’s one of those I-don’t-think-I-can-get-out-of-bed-days. Everyone in this house likes to eat. (The cats insist on it.) My pay will cover the mortgage, so we won’t be living under the Third St. bridge next month. This is dangerous, because I am a great catastrophizer, but sometimes it’s the only thing that works.

Artificial goals and lying to myself. If I can just do five more pages I can quit for the day. I know I can make it to the end of this section (that would be the lying part).

Stupid work. There are a lot of fairly pointless tasks that must be done anyway, but can be done by rote – adding headers and footers and page numbers, alphabetizing, running spell-check (or typing-check, as I prefer to think of it), that sort of thing. To me, that counts as actual work, and some days it’s all I can manage.

Unfortunately, none of these are effective for housework. No one pays me for that.

 

What Bipolar Disorder Has Cost Me

We lose a lot when we live with bipolar disorder – function, memory, friends and even family.

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But we also lose something more tangible – money. Or at least I did, and I know that a number of others have experienced this as well. Here’s how it went for me.

Work. I quit my full-time office job (possibly in a fit of hypomania). I had a new boss and had told her about my disorder. Her only question was, “What will that mean?” My answer was, “Sometimes I’ll have good days and bad days.” (It caught me by surprise.) Immediately after that, I began receiving bad evaluations, which I never had before. Was my performance really declining? It probably was, as I was heading into a major depressive episode.

But I wasn’t out of work quite yet. For a while I worked freelance, and pretty successfully. Then my brain broke, and there I was – unemployed. I had savings in a 401K, and we ran through all of that. Then my husband had a depressive episode and we ran through his 401K as well. And the money we got from refinancing our house.

Disability. Sometime in that stretch of time, my husband realized that our money was going to run out. He asked me to file for disability. Many of you know that story. I was denied. I got a disability lawyer. By this time – years later – I was able to work freelance again a bit, and my lawyer told me shortly before my appeal hearing was scheduled that the hearing officer’s head would explode when he learned what my hourly rate was.

Never mind that I could work only a few hours a week – maybe five, in a good week.

Insurance. Then there was insurance. As a freelancer, of course, I didn’t have any. My husband’s good county job had covered us, until he became unemployed too. I’m sure a lot of you know that story as well. No insurance. Huge pharmacy bills, and psychiatrist and psychotherapist, and doctor visits and the odd trip to Urgent Care.

Meds. Then my doctor put me on Abilify – $800 a month. I got a couple of months free from the drug company – just enough to discover that it really worked for me and I didn’t want to give it up.

Then, with remarkable timing, the Affordable Care Act (aka Obamacare) came along and we were able to get insurance again. It wasn’t really affordable, though, costing only slightly less per month than the Abilify. But it covered all our other prescriptions, too, so we came out a little ahead.

Budget. Since then, that’s the way it’s been going – month to month and disaster to disaster. My work is irregular and I never know how much I’ll get in any given month. My husband’s pay is steady, but meager – minimum wage. We have managed to make our mortgage payments and keep the house, which my husband doubted we’d be able to do when I couldn’t work. I know in that respect, we’re way luckier than many families struggling with bipolar disorder.

Our latest disaster came this week, when our only remaining partially working vehicle (no reverse gear) blew out second gear as well. The money we had borrowed and put aside for major dental work that the insurance wouldn’t cover disappeared with a poof – and still wasn’t enough. We had to borrow more from an already fed-up relative. I don’t blame her. She never expected to have to keep bailing out her grown son and his wife when she herself was past retirement age.

Our Future. I don’t see anything changing. My mental disorder is under much better control, but I know I’ll never be able to work in a full-time 9–5 job again. Job opportunities are few for people our age anyway, despite anti-age-discrimination laws. And I’ve never tried applying for a job where I must ask for accommodations to offset my illness, but I’m sure employers find lots of reasons not to hire people who need those. Again, despite the laws.

So why am I telling you all this? Am I just whining and feeling sorry for myself? Well, yes, I am, but that’s not the point, really. Bipolar disorder takes a brutal toll on our emotional lives, our families, our relationships, and more. It can also put us on the brink of poverty, or in our case, one paycheck and one more disaster away from desperate straits. I know that there are bipolar sufferers, including some of my friends, in much worse straits.

It’s stressful.

And we all know how stress affects a person with bipolar disorder.

Badly.

P.S. Aaand the well pump just gave out.

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