LIVING WITH BI-POLAR PEOPLE by ELLIN CURLEY

Carrie Fisher was bi-polar. To her credit, she talked about her condition openly and honestly. She brought attention to the disorder and tried to reduce the stigma associated with this, as well as other, mental illnesses. It’s sad that we need celebrities with diseases to increase public awareness about their given malady. But mental illnesses are inherently hard to diagnose, treat and talk about. So as long as people get educated about them, I guess it doesn’t matter how or why.

I have an unwanted and involuntary expertise in Bi-Polar Disorder. Both my ex husband and my son had/have the disease (my ex is deceased). Each of them manifested the condition differently – my ex was mostly manic and my son was mostly depressed. One of the most difficult aspects of this disorder is the fact that it can look so different in different people. It makes it much harder to diagnose because there is no “one-size fits all” set of symptoms by which to identify the condition.

bi-polar-masks

It also makes it harder on the families, who don’t always get the support they need from the medical community. It also makes it easier for the bi-polar person to deny that they have an identifiable syndrome that requires treatment. This denial is very common in Bi-Polar Disease. Also common is the refusal to stay on medication. These factors just add to the difficulties and pain of the family members.

The families of bi-polar sufferers feel different from other families. We know that other families’ lives are not fraught with the unpredictability, volatility and often violence (emotional if not physical) that ours are. We seem to be the only ones living on a roller coaster. We feel inferior, ashamed and isolated. Family members, me included, try to ‘cover up’ the problem and cover for the often inappropriate behavior of the bi-polar loved one. I made countless excuses for the actions and absences of my ex. My daughter tried to avoid the issue altogether by going to friends’ houses and never having friends come to ours when Daddy was ‘off’ or ‘acting up’.

When you live with a bi-polar person, you wonder what’s wrong with you that you live like this. You wonder why you aren’t like other people. Your ego and self-esteem suffer. This is particularly devastating for kids. My kids are in their 30’s and are still dealing with these issues. They are moving on from some questionable relationship choices they made in the past because of their lingering psychological demons.

On the other hand, denial and defending are also big parts of life with a bi-polar person. While married to my ex, after one of his particularly bad manic episodes, I was advised by psychiatrists to go to a program for abused spouses. I thought that was ridiculous. I was in therapy already and I was clearly not in that pathetic category! That label did not apply to me! Of course I didn’t go. I often wonder what would have been different in my life if I had received the support and empowerment I needed at that point in time. I now realize that the whole family needs support and treatment specifically designed to deal with the mentally ill family member. My individual therapy was not enough.

The faces of comedy, tragedy and more in an ancient relief

The faces of comedy, tragedy and more in an ancient relief

Today, there are claims that too many people are being labeled ADHD or Bi-Polar, that it’s become a psychiatric fad to assign mental illness labels to people and ply them with drugs. To me, it’s better to spread a wide net to catch all the people with serious issues and get them the treatment they need. You’re not going to be misdiagnosed if your behavior is perfectly within the range of normal. Something is going on if a doctor thinks you might be bi-polar! If it’s not manic depression, then it certainly is something else that needs attention and possibly medication. Sometimes the only way to come up with an effective treatment is by experimenting.

I became very pro-active psychiatrically. My daughter started to have panic attacks at the age of eleven and I got her on medication immediately. She is grateful to me that she never had to go through the torture of years of horrible anxiety symptoms. She would not have been able to function effectively through school and in jobs without her anxiety meds. I couldn’t get my ex to stay on meds and get a stable life. But at least I got my daughter on medication early so she had fewer issues getting through life than she would have without my early intervention. At least I have one psychiatric success story to brag about!

SEASONALLY FESTIVE

Festive?

The house looks festive. Lights are lit. The sun is shining on the sleeping dogs and there are Christmas cards spread across the coffee table. It definitely looks like Christmas.

300-table-xmas-eve2-4122016_03

After wrangling the lamb roast from another dimension and the rest of dinner for five yesterday — including two contiguous days of grocery shopping — by the end of the evening, I was beyond dead on my feet. I had moved into that Neverland of “everything … absolutely everything … hurts.” No drugs I have would touch it. There are entire classes of drugs (say NSAID twice, quickly) I can’t take.

 300-table-xmas-eve24122016_01

They are the ones that help, but they turn my stomach to rubbish and are on my “never allowed to take” list. I cheat occasionally, when I feel bad enough. One prescription-size ibuprofen makes a difference. It’s ironic that narcotics help a lot less than aspirin, but I can’t take aspirin. In this I am far from alone since many people can’t handle aspirin or any of the NSAIDs, but it makes dealing with pain incredibly complicated. And annoying. Because this particular issue always pops up at exactly the time when I most want to be functional and active.

300-poinsettia-xmas-eve-24122016_06

It’s the morning after the night before. The night before was tame by anyone’s standards, even mine. If I was previously unaware how my life has changed, mornings like this remind me. We had plans for today, but I woke up coughing, too.

That did it. I threw in the towel. I had been wondering how I was going to get through the day before the coughing started, but that was the straw that did me in. I call, apologized, and cancelled. I don’t even think I’d make it to the car today. I’m still trying to figure out how I’m going to cook later. Are you surprised we have leftover lamb? No? Bet you’re not! I wish I had kept some of the gravy, but that horse has left the barn.

It was a great Christmas Eve, but this day is recovery, recuperation, and trying to breathe. In a seasonally festive way, of course.

FESTIVE | DAILY POST

THE TRASH GOES OUT MORE OFTEN THAN I DO

“We are made of sterner stuff than most people,” my son said. This was in answer to the question how come we hurt so much and still function. Well, sort of function. I have to admit I’m losing the battle to soldier on and keep saying “I feel just fine, thank you.”

The other day, I bumped into this thing on Facebook.

fibromyalgia

I got to “The trash goes out more often than you do,” then I broke up. It’s true. The trash goes out at least once a week. I don’t necessarily get out that often. It depends on how things are going.

A lot of us have fibromyalgia. I try not to think about it because there really isn’t much to do about it. I’m taking as much as I can and that’s not much because I have so many other problems. There aren’t many drugs I can take that won’t interact negatively with other things I have to take or conditions I’ve got that are counter-indicative for that med.

Before I take anything, I look it up online. Ninety percent of the time, I can’t take it because I have a history of ulcers, have had a heart valve replacement, have high blood pressure, have a pacemaker … or take some other medication that makes it dangerous and this includes things like aspirin, ibuprofen, and many other over-the-counter medications.

Other stuff which might make me feel better are too expensive — and Medicare won’t pay for them … like asthma medication which now tops $500 a month out-of-pocket. Even a simple inhaler costs $50 with no assistance from insurance. They have decided that I don’t really need to breathe. Like hearing, seeing, and having teeth, breathing is “cosmetic.” You gotta love the system.

72-gray-afternooon-120215_14

So there’s not much for me to do about the fibromyalgia except ignore it. Mostly, that’s what I do. If people ask me how I am doing, I always say “I’m absolutely fine,” because any explanation gets way too complicated. Anyway, a lot of people think fibromyalgia is a fake disease created by malingerers who want those fabulous disability payments.

All of you fellow sufferers out there? I believe you. I know what it feels like when you can’t find a body part that doesn’t hurt and nothing in your big bag o’ meds will help. I know the frustration of making plans, then getting to the day and realizing you aren’t up to it. How, after a while, you realize this is the way it’s going to be.

The Mad Hatter reciting "Twinke, twinkle Little Bat," as illustrated by John Tenniel

The Mad Hatter reciting “Twinkle, twinkle Little Bat,” as illustrated by John Tenniel

I’m with you. But then, I laugh. Because life is absurd. The world is insane and so am I. Surely this is a bizarre alternate reality into which I’ve unknowingly slipped. Wake me when it’s better.

JUST ONE OF THOSE CRAZY THINGS – WHEN THE BONE DOESN’T KNIT

Yesterday morning, I dropped the mouse for the computer in the bedroom. I reached down to pick it up and a pain shot through my chest, down my arm and I yelped.

I had a lot of heart surgery a couple of years ago. Most of it has healed well. The thing that hasn’t healed properly is my breastbone. Surgeons split it in half when they work on your heart. Normally, it will take as much as between 2 and 6 months to knit into a single unit. Mine didn’t knit, so it’s still a two-piece breastbone. Healed, but not knitted and held together with steel wire. Apparently, no medical technology exists that can convince a bone to knit if it doesn’t want to.

Typically, this is a problem on joints that cannot be immobilized — ribs, breastbone, shoulders, spine. And, I should mention that when one of these is broken, you discover that every single other thing in your body is connected to it. So it has been for the past two days. Moving really hurts. But only at certain angles when using my right arm.

I’m a rightie. Of course.

72-kitchen-window-november-03112016_04

It seems a little better today than yesterday, but it’s still crunching with each breath I take. I can hear it through my inner ear. Creepy.

All of this makes it difficult for me to do stuff. If I want this to settle down, find its notch, and stop hurting, I have to settle down and be as still as I can for a few days.

All of this is an explanation of why I’m not doing much. I wrote a bunch of posts which are already scheduled. There will be new posts, but otherwise, I have to do the one thing that’s hardest for me to do: nothing. For a few days at least. If this doesn’t correct itself, I’ll have to go see a surgeon and I cannot emphasize enough how much I do not want any more surgery of any kind. Ever.

Meanwhile, I’m held together by some pretty tough steel wire and I’m resting. And hoping this takes care of itself.

PARTYING WITH THE INNER DEMONS … WHAT A HANGOVER!

My inner demons had a blowout party last night. I wasn’t invited, but I was allowed to have the hangover. It was one hell of a party because I wound up with a helluva hangover.

Backtracking slightly, I take a lot of medications. More than half of them are to control my blood pressure. I had a lot of heart surgery a couple of years ago. New mitral valve. Redesigned left ventricle and aortic valve. Bypass. Pacemaker implanted. The whole nine yards of heart surgery. My job is to keep active to the best of my ability … and not get myself so wound up that my drugs can’t keep up with my angst. To say this week has been hyper-over-the-top-angst-o-rama would be no exaggeration.

Photo: mightygodofthunder

Illustration: mightygodofthunder

Yesterday, I needed all the help I could get. Tranquility was hard to find. The political pundits — the same people whose predictions and polls were so horribly wrong — are now making new predictions. This time, about the dire consequences of the election they got wrong. I really favor the press. I believe a free press is the wall that stands between us and tyranny.

I also think they need to stop predicting the apocalypse. This is not helping. Guys? Gals? Take a breath and start over. Let’s work from what’s really happening this time rather than on what you fear, hope, or think will make a great headline, okay? Please? Let’s treat the news as fact-based, just for a while. Let’s not sling mud and spread rumors. It doesn’t make things better and raises everyone’s blood pressure.

Anyway, why should these people be more on target now than they were before the election? The answer is “no reason.” They know no more than you or me. Not yet. Nothing has happened. They are extrapolating and speculating to come up with what sounds like a reasonable scenario. Consider this before you leap from that tall building or when you’re getting ready to drink the Kool-Aid. Let’s not sing the death song quite yet. Are you with me? How about a couple of verses of “Kumbaya”? Or “We Shall Overcome”?

All this being said, by the time I hit the bed last night, I was worn to a frazzle. I have done my best to remain calm and stay in the car, as it were. To not leave my car bearing a paring knife to join the big gunfight.

Illustration: omegaman20

Illustration: omegaman20

As far a drugs go, I didn’t take any more than what is prescribed or anything I don’t usually take. Except when I lay me down to sleep, it all hit at the same time. The drugs, the day, the anxiety, the fear. Wham, bang. I was afraid to raise my head. I was sure I’d pass out.

Thus the party commenced. All my inner demons, physical and psychological, held a grand gala. They drank and danced. They laughed and spun as I lay wondering if I could get to the bathroom a dozen steps away to brush my teeth. Answer: no. I was in no fit shape to be upright. I gave in and went to sleep.

The demons had the party. I got the hangover.

I feel physically better this morning, so something got sorted out during those hours of darkness. If it seems like I’m working hard at staying centered and balanced, you’re correct. I cannot let those demons take over. The overnight shindig was enough. More than enough.

Meanwhile, back at the other laptop, Garry is suffering from Post-Election Trump-Induced Depression. Also known as PETID (PET-ID for the dog and cat enthusiasts). As opposed to the even worse buyer’s remorse that Trump’s voters are going to feel when they realize he isn’t going to do a damned thing to improve their lives.

That’s what you get when you follow a demagogue. That’s no garden path down which he is leading. There’s no better place at the other end of your journey. I guess a lot of people are about to learn this painful lesson. Too bad they didn’t learn it the easy way … from history books.

LIFE? DON’T TALK TO ME ABOUT LIFE.


Marvin: Life? Don’t talk to me about life!
Douglas Adams, Hitchhiker’s Guide to the Galaxy, 1979

There’s a lot of stuff going on. None of it — discounting, for the moment, the presidential election (which is a huge discount) — life-threatening, but much of it tiring and annoying — and all of it, expensive. These days, being healthy carries a hefty price tag.

When you live on a fixed income,  a few thousand dollars of additional debt is a big deal. It brings us to a screeching halt. It’s weird having to decide if ones health is worth the money. Even more hilarious, I find myself wondering if I’m going to live long enough to amortize the investment. If you feel inspired to encourage me with a platitude at this point, please don’t. I’ve heard them all, no doubt said them to myself and probably to other people. It will not make me feel better.

72-$ Ten thousand dollar bill

As a side note, last week, someone in New Hampshire won $457 million dollars on a $1 lottery ticket. It wasn’t us.

The only reason I’m bothering to write about this stuff at all, is it’s putting a damper on my joie de vivre.

So here, in his own words, are tidbits from the philosophy of Marvin, the Depressed Robot

marvin-the-robot

Picture credit: BBC

A Sunny Disposition:

Marvin: “My capacity for happiness you could fit into a matchbox without taking out the matches first.”

Arthur: “I think that door just sighed.”
Marvin: “Ghastly, isn’t it?”

Marvin: “Sorry, did I say something wrong? Pardon me for breathing which I never do anyway so I don’t know why I bother to say it oh God I’m so depressed.”

A ‘Can Do’ Attitude:

Arthur: “Marvin, any ideas?”
Marvin: “I have a million ideas. They all point to certain death.”

Trillian: “Marvin… you saved our lives!”
Marvin: “I know. Wretched, isn’t it?”

Marvin: “I’ve calculated your chance of survival, but I don’t think you’ll like it.”

A Strong Work Ethic:

Marvin: “I think you ought to know I’m feeling very depressed.”
Trillian: “Well, we have something that may take your mind off it.”
Marvin: “It won’t work, I have an exceptionally large mind.”

Marvin: “Here I am, brain the size of a planet, and they ask me to take you to the bridge. Call that job satisfaction, ’cause I don’t.”

Marvin: “‘Reverse primary thrust, Marvin.’ That’s what they say to me. ‘Open airlock number three, Marvin.’  ‘Marvin, can you pick up that piece of paper?’ Here I am, brain the size of a planet, and they ask me to pick up a piece of paper.”

A Good Education:

Marvin: “It gives me a headache just trying to think down to your level.”

Arthur Dent: “You mean you can see into my mind?”
Marvin: “Yes.”
Arthur: “Well?”
Marvin: “It amazes me how you manage to live in anything that small.”

Marvin: “I am at a rough estimate thirty billion times more intelligent than you. Let me give you an example. Think of a number, any number.”
Zem: “Er, five.”
Marvin: “Wrong. You see?”

A Positive Approach To Health And Well-being:

Zaphod Beeblebrox: “There’s a whole new life stretching out in front of you.”
Marvin: “Oh, not another one.”

Marvin: “Do you want me to sit in a corner and rust or just fall apart where I’m standing?”

Marvin: “The first ten million years were the worst. And the second ten million: they were the worst, too. The third ten million I didn’t enjoy at all. After that, I went into a bit of a decline.”

A Keen Interest In Philosophy:

Marvin: “Life? Don’t talk to me about life!”

Marvin: “I ache, therefore I am.”

Marvin: “Life. Loathe it or ignore it. You can’t like it.”

There, now don’t we all feel like better people already?

Douglas Adams, I still miss you all these many years later.

THE WEEK DRAWS TO A CLOSE

I got to see some really great x-rays of my spine yesterday. Garry got to see them too and I gave him a short course in why Marilyn’s back hurts. And how come what hurts also keeps my spine in one piece.

FYI, I'm a level 4 -- or was at the time of my surgery.

I was level 4 at the time of my surgery.

When I was 20 years old (1967), my vertebrae L3 through L5 were surgically fused. Not the way they do it today using hardware, but by taking a piece of my hip bone, pounding it into paste, and thence into glue. They first removed (to the extent they could back then, before micro instrumentation) the discs which were herniated and ruptured. Not doing me any good anyhow. They did their best to wrap the nerves to protect them from additional damage. Then, they  doped me up, wrapped me in plaster from armpit to knees, and told me not to move for a year.

I was in the hospital for four months. Flat on my back. Then I was at home for a long time. As soon as I felt better, I got pregnant.

They don’t do the surgery like that anymore. Nowadays, the surgery is entirely different. Plus, they get you out of bed and on your feet the day after surgery. But, this was 1967.

Treatment had begun to change even then, but change hadn’t made it to Oceanside, Long Island where I had my surgery. I should have gone to a more up-to-date hospital. I would have saved myself some pain and misery, though I think, in the end, the results would have been pretty much the same.

Fast forward 49 years. The fusion disintegrated decades ago, but nature is creative. My body provided its own version of fusion using calcium. That calcification is called arthritis, but it has effectively stabilized my spine. It hurts, but I’m not falling apart. This back won’t easily break.

There’s also nothing to be done about it. No surgery. My hips are terribly painful, but my hips are fine. The pain is reflected (deflected?) pain from my spine. So how come my back hurts too? If the pain is going to make something else hurt, shouldn’t it not hurt there too?

Spondylolisthesis-1What’s an aging lady to do? I can’t do MRI because I have a pacemaker and it isn’t one of the fancy ones that are immune to magnetism. I should have a warning label that says “Keep away from magnets.” An MRI is all about magnetism, so I’ll have to settle for a simple CAT scan.

Then, off to the spine folks and see if they are able and willing to try injecting cortisone and lidocaine to at least give me a few months of relative comfort. They might not be willing to do it. My back has scared some pretty impressive medical professionals. And if they can and will do it, there’s no guarantee it would help.

The good news? That ugly mass of calcification that has formed a solid sheath around my lower spine also guarantees that I can stand on my own feet. I may not walk well or stand straight, but I’m also not falling apart. It won’t get better, but it seems likely that it won’t get a lot worse, either. It’s pretty much as bad as it can get.

m-horseback-small

Who knew falling off horses when I was a teenager would disable me as a senior. They don’t warn you about that … and I wouldn’t have listened anyway. When you’re 15, you don’t see yourself old and broken. Probably, that’s a good thing.

The good news? My back is close to the same as it was seven years ago. It isn’t noticeably worse, though the CAT scan will paint a clearer picture. For me, not worse is good. Great, even. There are worse things than pain.