Patti's Response

(More wisdom from my new friend Patti Dempster. This was in response to my post, “The Safety Net,” where I talked about the possibility of going on disability, and the difficulty of facing the prospect of numerous government agencies, paperwork, and not working. Once again, thanks Patti – you’re response has led me to look at my situation in an entirely new light.)

The depressive voice is great at framing things in the bleakest of lights. As things went for me I am living that reality you painted and it isn't as bad as I had imagined it to be. It took me a long time and many, many set-backs to accept that I was not going to have my life back as I knew it. I racked up debt maintaining a lifestyle I could no longer afford. I compromised my recovery pushing myself to work when I should have been focusing on getting well and nothing else.

I had to go on BC SA last year for a couple of months while I waited on my CPP Disability application. Those were very, very hard times. The stress nearly did me in completely. I was fortunate to get it on the first go around. One small glitch with the Dr. who contradicted himself was cleared up pretty quickly. It’s not much money but enough to cover housing and food. Just that was a huge burden off my back.

One major learning I have gained is to think differently about work. Think outside the box. Don't think in terms of 'returning to work' but think in terms of working differently. Talk to your employer and see how much room there is for accommodation. Make friends with the bipolar. Partner with it instead of trying to defeat it. There will always be some elements of it, some special challenges related to it that you can't ignore. With bipolar there is a vulnerability to external stresses that will always be around. A fragility to your nature that the bipolar has expounded. A high maintenance component.

This is true no matter where you are on the spectrum of recovery. You cannot risk relapse at any time along the way. Change your benchmarks for success. Abandon the old paradigms. We don't all fit the same mold. Be willing to invent new molds and challenge others to allow you to operate and maximize your contributions in different ways than the norm. You may never be able to fit comfortably into the norms. That's okay. It doesn't need to compromise your capacity to work, to give back, to be part of something you love. Customize your environment. Press your employer and co-workers to accommodate and respect your unique health related challenges. Your special gifts come at a price but not such a high price it can't be worked around.

One more thought. I don’t know if I will find my way back to working for money in any significant way again. As modest as the amount is that I collect each month from CPP Disability, it does take the burden of homelessness off the table. Of that I am extremely grateful. Not being consumed with that worry has given me the opportunity to really think about the value of work.

I think it was Melody who mentioned the need to work as a way of feeling of some value. But do we need to have a paying job to attain that same sense of value; to be productive; to feel we are giving something back to the world we live in? Can we achieve those goals, fulfill those needs without being paid? I think we can, and if we are not in a position to get a paying job then we find other ways. We volunteer in whatever capacities we can. We look to our left and to our right and we help others. We use our time wisely and productively while we stay the course of improving our health and well-being. Again it is about respecting the illness; Accommodating the special requirements for recovery. We don’t fight the illness, we partner with the illness and we learn how to live as one.

These are the lessons of balance and harmony. This is what it means to ‘walk in beauty’. Don’t be looking back at what were your benchmarks for success. Look forward at what is possible and create new, more meaningful and more achievable goals and pathways to new success.

You Don't Seem Bipolar To Me

For years I had been under the assumption that I was suffering from serious depression.

When I was discharged from hospital, I was placed under the care of an elderly psychiatrist who was very old fashioned. I later learned that the drugs he prescribed for me were also old – medications that had been used in the 70s and 80s, which had horrible side effects. When he began to spend our appointments talking about his failing marriage, I bailed.

I’ve now learned that, unlike cardiac surgeons or neurologists who are all top flight, psychiatrists can differ radically in their competency.

I used light therapy, exercise, meditation, whatever I could to fight my depression, which seemed to cycle seasonally.

Finally, it got so bad that I went to the drop-in clinic. I didn’t have a family doctor (there is a shortage here), so had been seeing one of the doctors at the clinic for a few years. He was a nice guy, but would breeze into the examination room, do a quick check, then give me a prescription and leave.

This time, he took a bit more care. He listened to my concerns, then rather than try to prescribe an antidepressant gave me a referral to the rapid access psychiatric clinic in our town. I appreciated that.

“These people are excellent, and will give you a good evaluation.”

Bipolar disorder tends to get worse the longer it goes untreated. I didn’t know this at the time, and was very worried that my depressive cycles were getting longer and deeper.

When my assessment came back and diagnosed me as bipolar, I was shocked. My wife wasn’t.

“I knew it. I kept telling you that you were.”

She had. Several of my friends had assumed I was, too…and were surprised when I told them that I was just depressed. I should have listened to them earlier.

The assessment included instructions for the clinic doctor, including starting me on Lamotragine, and then adding Lithium.

I went back to see the doctor, who has known me for maybe a total of half an hour over the last five years.

He looked at the report and clucked.

“I think this is wrong. You don’t seem bipolar to me.”

I looked at him, sort of amazed at his logic and apparent ability to diagnose based on five years of brief interactions.

“My wife thinks I am.”

“Really…well, that’s interesting, but doesn’t change my opinion.”

I was really starting to wonder about him, so I asked “…then why did you send me for an assessment, if you were going to ignore it if it didn’t fit your expectations?”

He went a little red.

“Look,” I said, “a specialist has assessed me. My wife and friends think the assessment makes sense. You don’t know me, and haven’t assessed me. I am desperate. Can we please just follow the instructions?”

He frowned. “I will prescribe the Lamotragine, but not the Lithium. It’s far too dangerous.”

I started on the Lamotragine. I went back to the psychiatric group clinic. The doctors there prescribed the Lithium for me, and were puzzled why a General Practitioner would adhere to the myth of the dangers of Lithium.

Soon after, a new family doctor moved into my neighbourhood. She is fantastic – the best doctor I’ve ever known. I feel incredibly lucky. She isn’t scared of Lithium. She will contact a psychiatrist when she needs to. She sends me for regular tests to monitor my Lithium levels and heart and kidney function. I feel like I am in very good hands.

As I’ve said before, if you can help it, never let a GP prescribe a psychotropic medication before first consulting with a psychiatrist. Get a regular family doctor if you can. Finally, if you and your psychiatrist are not a good fit, do what you can to get a different one. Getting access to a psychiatric clinic is a good start – even if you don’t like the doctor that assesses you, you will be able to see multiple psychiatrists.

In my case, a good family doctor and access to good psychiatrists saved my life. (see my post on PRNs).

Ferrari

No, I’m not referring to Derek Zoolander’s iconic runway look.

“Ferrari” is the analogy that a psychiatrist used to describe bipolar disorder to me and my wife.

“Look – Ferraris are high performance vehicles. But they break down a lot – they’re temperamental. Think of yourself as a high end sports car – you run great a lot of the time, in fact better than most people, but then you either go too fast and crash or your engine conks out.”

I was thinking about that late last night as I tore down and rebuilt the marble chase from scratch. The old one worked about 10% of the time. The new one is sturdier, and I’ve incorporated changes from what I’ve learned, and it works 80% of the time (the elevator works 100% of the time – yay!).

Small changes upset the balance of the whole system. Even a few millimetres out from some loosened tape means I lose my marbles.

If I’m a Ferrari, then I have to keep my engine in good shape, to avoid breakdowns.

If I’m a marble chase, I need to be maintained with the strongest tape and glue, and to be mindful of my balance at all times.

So today I am eating five small meals. I got out for some exercise. And I am going to have a nap.

This maintenance should help me keep my marbles.

(If you’ve read my other post on marbles, this one will sound confusing. Just go with it.)

Remember – I would love to get submissions like the touching story yesterday. They can be much shorter, or longer, or even just a sentence. Please feel free to share – even if it’s about someone you know (it doesn’t have to be about yourself). You can reach me at ih8mondaze@gmail.com. Thanks!

What It's Like to Hear Voices

My psychosis was relatively mild, but it was a constant interruption, and almost killed me. I can’t imagine what people who have severe hallucinations go through day to day.

There’s a man I see on the main street where I live. He spends his time sweeping the sidewalks and generally cleaning up. He is almost constantly talking to someone who isn’t there. Shopkeepers give him free coffee and food. He is diligent and does a good job.

What makes psychosis different from “imagination” is that it seems absolutely real. If you are reading this on your PC (I hate Macs – sorry), and someone is sitting nearby and talking at you, that’s what psychosis feels like. That talking is real – it isn’t in your head. You might even see that person, and they are real – just invisible to everyone else.

What I had were auditory hallucinations – that meant I heard voices (well, one voice, actually), but didn’t see things that weren’t there. When I first heard the voice I thought that someone was playing a trick on me, because I couldn’t see anyone. I came to realize it was coming from my own head, but that didn’t make it any better.

Hallucinations are compelling. Even though on some level I knew there was no Darth Vader around me, I listened as if there were, and responded to him when he asked.

I mentioned before how some philosophers have queried how we differ dreams from reality. The consensus seems to be by the intensity of what we experience. The real world is just more compelling than our imagined one, and so is separated by a wall from the dream world.

When you are experiencing psychosis, that wall begins to crumble. Your dreams (or nightmares) become just as intense and compelling as the reality, and you can’t tell them apart.

Psychosis can be a very dangerous state. That’s why it’s treated so seriously. The people on the street that you see who are talking to themselves may not be on medication, but will have been through the mental health system at some point, and are generally benign. They won’t hurt you – they are fragile and much more likely than the average person to be victims of crime than victimizers.

Antipsychotic medications are like the “contrast” control on a PC monitor. They sharpen the image up, so you can tell what is real and what isn’t. They worked well for me. First Darth Vader became quiet and an obvious delusion, and then the voice stopped. I cannot describe the relief that I felt.

I don’t know how to use the contrast control on a Mac. It’s not as easy as a PC, so I didn’t feel right using it in the analogy above.

Sorry, Mac users.

Why I'm Like Britney Spears

There are three things Britney Spears and I have in common.

1. We both have a mental illness.
2. We both are great dancers.
3. We both did something drastic with our hair.

Okay, so maybe number two is a stretch. Britney is not THAT great of a dancer.

When I was in hospital, I had a hard time believing that people were taking me seriously. I even had a hard time taking myself seriously. When a disease manifests itself in your thinking and feelings, it's hard to trust yourself. Thinking and feeling are supposed to be under your control, right?

So when you are feeling so sick inside, you find ways of showing it on the outside to prove to yourself and the world that you really are sick.

My theory is that this is what happened when Britney Spears shaved her head, in full view of the paparazzi. That was a pivotal moment, where everyone in the media went whoa - she really is crazy.

For me, a shaved head would not do it. Although I had a full head of hair when I was admitted to hospital, it had been shaved before as part of a library event. I didn't want to cut myself, and head banging had only landed me in seclusion. I thought about drawing all over myself with pen, but that seemed soooo grade school. Then I got an idea.

I asked my nurse (it happened to be Dave) for my electric razor. My wife had brought it in for me, and I was allowed it for brief periods of time to shave. I took it to my room, and used the little pop-up beard trimmer to shave off my hair...and my eyebrows. I put all of the clippings into the garbage can (lined with a paper bag), and returned the razor to Dave. He was looking down at some charts.

"Oh, thanks D'Arcy, I'd forgotten about that."

"It's okay, Dave. You took so long to check that I thought about pulling the back off and stealing some parts so I could electrocute myself tonight, but I didn't, so no harm done."

That made him glance up, concerned. That's when he noticed my new look.

"Why did you shave your hair and eyebrows off?"

"Well," I replied, "I figured that since nobody outside is going to see me for a long time anyway, I should try the Charlie Brown look. What do you think?"

"Interesting," he said. He pulled out my chart and made some notes.

As an aside, I do not recommend shaving off your eyebrows. Ladies, I don't know how you cope with such small, plucked ones. I learned that eyebrows are crap catchers - without them, all sorts of crap falls into your eyes. I was glad when they grew back.

I kept my head shaved, though. It was super comfortable, and meant that I no longer had to lather, rinse and repeat. I just buff it once a day. ;)

Bi-curious