Good-byes

This is my one-hundredth post to my blog. It is also my last. It will remain available on Facebook and Blogspot, but I doubt that I will add anything to it.

I’m stopping here because I think I’ve shared all that I need to share (also, one hundred is a nice round number). In TV talk, I’ve “jumped the shark.” (I vividly remember that episode of Happy Days, and thinking that Fonzie had gone too far).

I started this blog for selfish reasons. I needed a forum in which to open up, so that I would feel less shame about my illness. I wanted to help my family and friends understand me better. I needed to feel that I was doing something useful while my wife was in hospital and I was off work.

I was expecting a handful of readers. Instead, I got several thousand.

The internet is a crazy thing.

You have been reading Upsy/Downsy along with people from twenty different countries. Most are from Canada and the U.S., but there are also readers from Santiago, Chile; London, England; Paris, France; and even more in Norway, Finland, Venezuela, Croatia, New Zealand, Romania, South Africa and on and on. I enjoyed receiving e-mail from around the globe.

Mental illness exists all over the world. I worry about the stigma in Canada, but know that it is much worse in many other places.

I hope that all of you who have read Upsy/Downsy, if you aren’t already, can share a little bit of your understanding with others - to help lift some of the burden from the shoulders of the mentally ill around you.

If you are living with mental illness, I hope that this blog has provided some comfort, and that you find the tools and the support that you need to heal.

Thanks for reading. Be well, my friends.

D’Arcy

Turf Wars

When I was released from hospital, I had to have some supports in place. I didn’t have a family doctor, so was told to go to the same walk in clinic each time. I was assigned a psychiatrist, and got a referral to a therapist.

My first stop was the therapist.

“Do they have you seeing a psychiatrist, too?”

“Yes.”

“Are you on medication?”

“Yes.”

The therapist clucked disapprovingly.

“So, they’ve got you on the medication merry-go-round.”

I must have looked confused.

“Look – these psychiatrists will just get you hooked on medications, and keep you drugged up the rest of your life. You really should just be in therapy.”

Next was my appointment with my new psychiatrist (I’ll call him Dr. No).

“What are you doing with a therapist?” he asked with a big smile. “You don’t need one. Don’t waste your money. I don’t treat people who see therapists – it gets too confusing.”

I was weak and vulnerable. All I knew was that the hospital psychiatrists had saved my life. So I called my new therapist and told him sorry, I was going to have to stop seeing him.

It was like a weird love triangle. The therapist was furious with Dr. No. I was being forced by both of them to make a choice. Looking back, I think either choice would have been bad.

Dr. No began by taking a detailed history of my ethnic origins. He drew a complex chart. This, he explained, would help him decide how to treat me best.

He prescribed entirely different medications than I had been given in hospital. When I asked why, he said that they were older, more proven, and cheaper.

The side effects were horrible. I had weight gain, sleep disturbances, was tired all of the time, and had to wear sunscreen as my skin had become highly sensitive to sunlight.

When I went to see Dr. No for my weekly appointment, I would start off by talking about how I was feeling – then he would cut me off. “We’ll simply adjust your medications a little,” was all he would say. Then he would get weird, and talk about his failing marriage.

Then I learned that a possible side effect of Imipramine is sudden death from cardiac failure.

Dr. No had not explained this to me.

So I fired him.

I went to a walk-in clinic. I saw a doctor and told him my story.

“Will it kill me or irreparably harm me if I quit my medications - cold-turkey?”

“Well,” he replied, looking concerned, “you should really talk with your psychiatrist. If you do quit, you should taper the doses. If you are having psychiatric symptoms, they may return.”

“I’m sorry, but you didn’t answer my question. Will it harm me or kill me?”

He hemmed and hawed. “It won’t kill you. But you will feel like hell for two or three weeks.”

I went home and threw all of my pills in the garbage. I was super sick for two weeks.

The symptoms returned, but were manageable.

Since then I have met many amazing psychiatrists (most are – Dr. No was a rare dud), who use modern methods, modern medications with few side-effects, and recommend counselling. Still, I come across some therapists who look down their noses at psychiatrists (but they are becoming rarer).

When your life is at risk, turf wars can kill you.

You need every tool available to survive. 

Support

My wife is finally home. It has been a year since her first hospitalization. The last twelve months have been, to say the least, a huge challenge for everyone in our family.

I am so proud of how hard she has worked to get to this point. There is still a long way to go – right now she is getting daily visits from nurses, and a once a week house call from a doctor. (They still do that! It’s like Little House on the Prairie – except we don’t have to pay him with apples or a chicken). Our goal is to keep her out of the hospital.

My daily struggle is maintaining a healthy balance: between stabilizing enough to be able to return to work, and supporting the woman I love in her recovery. Both of us need to get healthy for ourselves, our family and our relationship. But there is no doubt that she has suffered more and needs much more support than I do.

What I’ve been learning to do, no matter how guilty it makes me feel, is to rely on others for help. When she is having a hard time and I am low on resources, I will get her to phone a member of her care team. I have to admit to myself that I can’t do everything for her, or for our family. That’s why there are professionals, and that’s what friends and extended family are for, too.

One of the reasons my first marriage broke up was that my partner didn’t understand my illness, and the strain of living with a sick person became too much. She expected emotional resources that I couldn’t give, and in return couldn’t give me the support that I needed to be well.

Some people have said that I must be a patient man to live with a person as ill as my wife.

I say that she is the patient one, slowly and with great effort moving herself towards recovery.

No matter how difficult things get with my wife’s illness, it is so much better having her home than in hospital. She lights up the house and everyone is happier - even the cat.

I am working on my balance so that I can continue to get well, and provide the resources my wife needs. I want to support her in the way that I wish I had been supported when I was so sick.

She deserves nothing less.

Didn't You Get the Memo?

A lot of what you learn as a psych patient to manage your illness can be applied to everyone. We all go through periods of sadness, worry, anxiety, anger, despair, agitation – yet most of us are not taught techniques to navigate through these tough times.

Because psychiatric patients have to deal with super-sized versions of tough times, they are given exercises and tools to help cope. But these tools are useful for everyone, and if they were made more widely available would lead to less stress and more happiness.

Why shouldn’t mindfulness, meditation, dialectic behaviour therapy, and cognitive behaviour therapy be included in the physical education curriculum in high school? The teenage years are when most mental illnesses begin to manifest themselves. Why not give teens some tools to stay mentally healthy and happy? It wouldn’t even take much time – say eight to twelve hours over two or three years. A small investment with a big payoff.

Why should this be in physical education? Anima Sana In Corpore Sano (“A sound mind in a sound body”). Okay, it’s Latin, and I stole that from the shoe company Asics (it’s the brand of jogging shoe I wear). But it’s a great slogan, isn’t it? You can’t have a healthy body without a healthy mind.

Here are two techniques I learned today that I think could help anyone.

Write a note to yourself when you are happy. Say something about how happy you are, how sadness will pass, and how you can feel happy again. When you feel really bad, pull it out – it’s a memo from your past to the present, and it will help you feel a little better.

Make a list of all of the things that are true about yourself, even if you don’t believe them. This includes things others have said to you. Things like “I am smart,” or “People like me.” When your self-esteem hits bottom, pull that list out and read it out loud to yourself.

I cannot thank enough everyone who has taught me this year. I have a long way to go. Not every technique I learn is useful for me, but will be useful for someone else.

One very important thing I have gained is an understanding of the need for routine in my life. I am looking at the clock – it is bedtime.

Thanks for reading. See you in the morning. J

Obsessing

I’m slowly learning more about anxiety. There are a number of specific anxiety disorders (I’ve been labelled with two of them), but in reality symptoms overlap and it seems that anyone with severe anxiety can have a number of symptoms from a variety of categories.

People who live with Bipolar Disorder tend to have accompanying anxiety disorders. For me, my diagnosis of bipolar came with an accompanying diagnosis of Generalized Anxiety Disorder (GAD) and Social Anxiety Disorder (SAD). But really, those categories don’t tell the whole picture.

For years my wife has told me she thinks I have Obsessive Compulsive Disorder. That is also an anxiety disorder, characterized by obsessive thoughts and compulsions to act on certain behaviours.

Now I don’t have most of the symptoms of this disorder, but it turns out that it is common for people with anxiety to have some of them. A common one is obsessing over intrusive thoughts.

Everyone has intrusive thoughts. But for someone who is anxious, intrusive thoughts can become obsessions.

I obsess over intrusive thoughts, but much less than I used to. When I’m depressed and anxious, a thought might pop into my head like “What if I stepped in front of a bus?” I will feel guilt for even having that idea, and think about it over and over and over, unable to stop, until the it becomes a compulsion. There are techniques I can use now to prevent that. Focusing on something else that requires great effort and total concentration (like who will win “Dancing with the Stars”) is the best one for me.

For as long as I can remember, I have used tiny rituals to prevent bad things from happening. This is also a symptom of anxiety, but is not true OCD. I’ve managed to rid myself of most of these over the years, through self-talk and willpower. But I’ve kept some. I bet you have one or two as well – everyone gets anxious sometimes, and everyone has some sort of superstition.

Here are a few that I still have, but aren’t too bothersome:

-        I cannot have cutlery pointing in my direction.

-        Plates on the table need to have their designs all aligned the same way (plain plates are nice, but we own ones with a pattern).

-        Instead of “knocking on wood” I have to knock on my own bald head three times.

-        If I turn my body completely around one way (say, to the left), the next time I have to turn it the opposite direction, so that I don’t get “wound up.” (Good thing I’m not Zoolander and can turn both ways).

Anxiety is okay sometimes – it’s normal, and doesn’t mean you’re sick. However, when it starts to impair your day-to-day ability to function, then you need some help.

(This website is a great place to start – I just found it, and it looks amazing).

Now I’m going to go and pet the cat twenty times, and make a cup of coffee that fills the cup to exactly two centimetres below the brim.

There's No Comfort in the Waiting Room

Several weeks ago my wife was taken to hospital by an ambulance. She called me in advance, and I told her that I would meet her at the ER. This has happened a few times this year, but every time seems just as stressful as the last.

When my wife is suffering, I want to be with her and see her with my own eyes and hear her with my own ears. I don’t want to be told second or third hand what is happening. I don’t trust anyone until I have confirmation for myself that she is safe.

I arrived at the waiting room and waited in line. The clerk at the admitting desk had not heard of Teresa. I was pretty sure she was there – either that, or the ambulance was the kind that had to be pedalled.

I used the courtesy phone to call the central switchboard. They confirmed that Teresa had indeed been admitted, and was in Emergency.

She was so close – somewhere behind the secure glass doors. It was frustrating.

I asked a young lady who was volunteering if she could help. She headed off to find out where Teresa was.

I sat, staring at my shoes – eerily like the Death Cab for Cutie song “What Sarah Said.” The TV was entertaining itself, and nobody was looking up except when a nurse walked in announcing a name.

I became consumed with worries and “what ifs.” Finally, the volunteer returned – no, she couldn’t find anyone named Teresa.

I looked down the hall and saw two women come out of the Social Workers offices. One wore high heels, the other sneakers. I walked up and interrupted, asking to speak to the sneakered one (see my earlier post “Getting Support from Child Protective Services” for the reasons why).

I told her my problem. She smiled, and said “I’ll talk to the nurses and we’ll find her for you.”

In five minutes she was back with a nurse. They took me through the glass doors to where Teresa was, about twenty meters from where I had been sitting the whole time. The whole process had taken about forty minutes.

I saw many other worried and frustrated people arrive – knowing that a loved one had been brought in by ambulance, but not knowing where they were. The quiet anxiety in the waiting room is palpable.

If part of a hospital’s mission is to alleviate suffering, they could do a lot of work in the waiting room. A good start would be making a social worker available to help reduce the anxiety and suffering.

Just as long as it’s one who wears comfortable shoes.

Flashlights

For a mentally ill person, the right amount of sleep is critical. Having a regular bedtime and wake-up time, getting between 7-9 hours a night, and enjoying a sound sleep are all conducive to good mental health.

My worst periods of illness have come with severe sleep disturbances, where I get very little sleep followed by a crash into depression. But in some cases lack of sleep is used as a therapeutic device. According to one of my psychiatrists, patients that are not responding to an antidepressant may do better if deprived of sleep for one night.

Anyhow, the whole point of this is that generally sleep is good. I think we can all agree on that.

What I dislike about every psych ward is how hard it is to get a good sleep. First off, your door is never fully closed – so you hear everything that is happening (and stuff happens all night). There is light from the hallway. You usually have a roommate with some sort of apnea or snoring problem (that was me, actually. Apologies to all of my former roommates).

But the biggest disruptor is that every hour or so one of the nurses checks on you. With a flashlight. Aimed at your face.

I don’t know what they expect to see. I would have loved to have had a scary mask to slip on after I went to bed. The nurses can see perfectly well enough to know that there is a person there, and that they are breathing. So why the light to the face?

Even cheap digital video cameras have infra-red night vision, now. Why not use one of those if you really want to see my face while I’m sleeping?

Disrupted sleep combined with disturbing food. Both things, I think, could be improved. If you had to live at a hospital, it would make you crazy.

Which is kind of ironic when you think about it.

An Up and Down (but mostly up) Day

I’m writing this at 3:30 in the morning. I’ve had six hours of sleep, so I’ll take a nap later on to make up for the hour or two more that I need. I’m very excited.

The big “up” yesterday was my wife coming home from hospital. She has worked so hard at getting well, and I am very proud of her. This, by far, trumps everything else that happened yesterday. I am very, very happy and excited.

The down part was a visit to my doctor, who found me not fit to return to work. She suspects it may be another month. This is very disappointing, as I feel ready and miss my job terribly. However, I have a tremendous amount of respect for her, and know that my judgement is probably impaired. I have to be careful now not to let this depress me. It’s a delicate balancing act and a potential vicious circle – not being able to return to work depresses me, and my depression ensures that I will not be able to return to work.

One of the most frustrating things about being mentally ill is your loss of autonomy. Every hospitalization includes certification – you cannot check yourself in and out, so you lose most of your civil rights. Every time you cannot work for an extended period of time, your doctor has to give the okay before you can go back.

The loss of autonomy can trigger funny things in families. People assume that because others are making important decisions for you, that you are incapable of making any decision. The reality is that most psych patients are perfectly able to participate in the decision-making process. It’s nice to have an advocate and support, but whenever possible we (I’m using the collective because I’m very confident that this applies to most of us who are mentally ill) want to make decisions for ourselves. We don’t like having medications forced on us. We don’t like family members talking to doctors without our knowledge. We want to be included in any discussions involving our treatment. For the most part, care teams respect this and understand the need for us to feel some sort of control.

So my work for the next while is to improve my stability, so that I can return to work and make more decisions for myself. This will be made easier by having my amazing partner back. She is so supportive and has taught me so many skills to manage my illness.

 

I figure that yesterday turned into more than a balanced day.

It was incredibly special, and I’m sure that will be reflected in my Moodscope score later this morning.

Drifting Apart

“Drifting Apart”

I’ve only recently been diagnosed with Social Anxiety Disorder. It often accompanies Bipolar Disorder. Again, it’s like getting a pair of glasses for the first time – I thought everyone felt the same as I did. Turns out you all don’t.

I have lots and lots of friends, but I rarely call them or see them. They are either people I work with or neighbours. Doing something social is a rarity – when I’m invited, I usually panic inside and decline – it’s like a reflex.

I haven’t kept any of the friends I made in high school, college or university.

I have trouble asking for help. I’ve gone through some pretty tough times, but have always avoided seeking assistance – just the thought of it makes me cringe.

I get super anxious thinking about parties, meetings, or other gatherings. When I go, I tend to talk to one or two people, and then sneak away.

My anxiety causes me to forget names. When I’m introduced, I’m so stressed that the name just flies by.

The biggest pain this has caused me is my drift away from my relatives. It’s insidious – everything is fine one day, and then I forget to return a phone call. The anxiety about not returning the call grows and grows, until it is huge. I become totally impaired, and separated.

I now have no contact with any of my aunts, uncles or cousins, save for a second cousin once removed. I have gone long stretches when I have been very unwell where I have had little contact with my siblings.

I wish this would just stop, but it’s going to take a lot of work. Some of the medication I’m taking will help, but the more important thing right now is to get my bipolar disorder under control.

Anyhow, that is only a brief introduction to SAD and how it affects me. Please don’t feel badly for me – I’m used to it and assumed for almost my whole life that it is normal. If you run into me on the street (I’m pretty easy to recognize) please introduce yourself and ask me to explain more.

I will say hello, immediately forget your name, and happily chat with you – all the while panicking a bit on the inside.

Fear of the Mirror

I began fearing the mirror when I saw my first gray hair. Then I realized the problem wasn’t the mirror, it was me.

So I shaved my head.

There is a stigma about visiting a counselor. Every office I’ve visited either spaces appointments far apart so that there is no chance you will run into another client; or it has an “airlock” – one waiting room where you come in, and an entirely different exit for when you leave.

(It’s kind of what I imagine visiting a mafia kingpin would be like – in the front door, then thrown out into the back alley by goons.)

I grew up believing that visiting a counselor meant I had a weakness. I also believed that they would collect information about me that would go in a file that would somehow follow me around, like my “permanent” record in school. (I imagined that as a kind of Rosetta Stone – unearthed a thousand years from now for archaeologists to cluck over the fact I was absent for twelve days in grade three).

A lot of people still believe this stuff. I’ve visited lots of counselors, and I can tell you this – they are simply human mirrors.

It takes a lot of study, training and skill to become a good human mirror. In British Columbia, make sure the mirror is a Registered Clinical Counselor. This certification requires a tremendous amount of education and expertise.

So how does a human mirror help?

It shows us all of the things about ourselves that we haven’t noticed or have ignored. It asks questions that challenge us to think about how we want to live our lives. It gives broad guidelines as to how others have dealt with similar things, and homework to help us overcome our obstacles.

It is hard work sitting with a living mirror that is gently getting you to notice and learn things about yourself that you don’t want to know. But the insights are pure gold.

Which brings me back to the stigma.

Visiting a counselor means admitting that you need to work on some part of your life. Like our assumption that mental illness is very rare, we assume that very few people need to seek help with their issues. So looking for counseling becomes shameful.

In reality, everyone could use a counselor to have a good look in the mirror. Everyone has issues they can work on. Often the people who are most vocal about not needing help are the ones who need it the most.

I am proud when I go to see my counselor, because this particular mirror has not only shown me my issues, it has shown me how much progress I have made addressing them.

I hope that one day counseling offices won’t need airlocks.

Gifts

My grandmother, “Nana,” taught me two very important things.

When I was a child, she taught me the first thing. It was a trick she showed kids in Sunday school. She took a pickle jar full of water, and said “This is the world.” Then she put some kind of dark dye in it, so it turned black. “This is sin in the world.” Then she took a little felt sheep on a string – it had some kind of powder sewn inside – and she dunked it in the jar. The water became clear. When she pulled the sheep out, it was still pure and white.

When I was an adult, she taught me the second thing. “A fire,” she said, “is a tree giving us the gift of all of the sunrises and sunsets it has seen growing up.”

Nana was dying in a hospice, beside a window with one of her favourite views of the hills. The rest of the family had gone for lunch – everyone had spent long hours by her bed, and it was my turn to stay.

Her breathing was ragged and she was comatose. For about an hour I held her hand and sang to her, giving back all of the songs I could remember her singing to me as a child.

When the rest of the family returned, we told her that everyone was with her. Then she left us.

It came to me what the two things – that happened so far apart in my life – meant.

Like the little felt sheep, I can be immersed in the darkness of my illness, and emerge unchanged.

No matter how imperfect I am, I have seen a lot of sunrises and sunsets, and have light to share with the world.

Anxiety

I’ve been spending a lot of time talking about living with bipolar disorder. I also live with other things that cause me trouble – like my cat, my nearsightedness, and two anxiety disorders.

I live with Social Anxiety Disorder and Generalized Anxiety Disorder. All anxiety disorders are related, and include:

 
-        Obsessive Compulsive Disorder
-        Post Traumatic Stress Disorder
-        Panic Attacks
-        Anxiety Attacks
-        Phobias
-        Cutting and Self Harm

I didn’t realize that I was anxious until I was hospitalized. It was like when I was in grade two – I sat at the front of the class and squinted at the blackboard, not realizing that anybody else in the class had to do that. I just assumed everyone saw the world as I did.

Then I got my first pair of glasses. The shock of putting them on, and being able to see leaves on trees, was profound.

That’s what it’s like when you begin to learn to control your anxiety. You believe that it is  entirely normal to worry about the future and to obsess about the past, and are shocked to find out that the majority do not.

I worry about the same things as everyone else. Money, relationships, work, the weather. The deal with GAD is that the worrying becomes intrusive and obsessive. It means you worry every day, and it makes it difficult to relax and concentrate.

For me, GAD means that I avoid things that I need to do. Taxes, for example. Or looking at my banking information. Money is a bad one for me.

I put things off because I feel overwhelmed a lot of the time. Or, I leave things until the last minute because I’m worried that I will do a poor job. I just can’t get started.

The worry takes a physical toll. It is hard to take breaks without feeling guilty.

There are many ways to cope. I will talk about some of them another time. The one I use the most is saying to myself:

“What is the absolute worst thing that can happen in this situation?”

Here’s an example. This is what I would think with my anxious brain:

“I’m worried that I will be late to pick up my wife for our date, then we won’t get in to see the play she wanted and I will have wasted $100.00 and my wife will hate me and want a divorce, or at least make me sleep on the couch forever.”

So this is what I tell myself:

“What is really the worst thing that is likely to happen? I will be late, and I will apologize. My wife might be mad. I will have wasted $100.00, but that won’t make us broke. I will take her to a movie instead, and then I won’t have to see that stupid play. The next day I will get her some flowers to say sorry.”

…and then what really happens? I show up on time.

My wife would say that is one great thing about my disorder. I am never late.

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.

Embracing My Illness

This is something I never thought I would write, until I read a reply from Patti yesterday. I have asked for her permission to make it a post, and am hoping she will let me share it with everyone.

I’ve been fighting my illness, but really there is no way to beat it (not yet, anyways). So I need to stop fighting, and accept a few things. Here are some:

 -        My diagnosis.

-        There is no cure. (Not yet).
-        Taking medications. They cause side effects, and I don’t want to take them when I’m feeling really well. When I’m feeling well, it makes the whole “being sick” thing feel like a mistake.
-        My limitations. Stressful situations aggravate my illness, and I need to avoid them.
-        My work. I need to modify my work to accommodate my illness, otherwise I will just keep getting sick.
-        My lifestyle. I can no longer drink alcohol or have caffeine. I have to have a regular bedtime, otherwise my disrupted sleep will throw me into a dangerous depression.
-        I can’t tolerate too much change. I need stability.
-        My anxiety. I will always have trouble being around other people.
-        My need for order in my life.
-        My need for exercise and proper diet.

Here are some things that my illness does to me. It:

-        Makes me not want to exercise.
-        Makes me crave carbs.
-        Makes me start big projects, and work on them continuously until they are finished.
-        Causes me to create grandiose plans.
-        Makes me feel like I’m smarter than everyone else.
-        Makes me less tolerant.
-        Makes me stay in bed, not shave or shower, and cry a lot.
-        Makes me want to hurt or kill myself.
-        Causes my brain to overload, so I become slow at making decisions and can’t think clearly.

Everyone gets sick at some point (even Superman got sick when Lex Luthor exposed him to Kryptonite). This feels like it isn’t fair, but that’s life. This just happens to be my disease.

I’ve never realized this, but I can embrace my illness with all of its quirks and limitations, and live with it in a positive way. (I was going to make a comparison to marriage there, but realized that I would not have a great day with my wife if I did that).

How I Beat Depression Today

I don’t know why it’s been so hard today.

That is one of the very frustrating things about mental illness. Feelings happen for no reason.

Try thinking of it this way. As your read this, your right hand suddenly punches you in the face.

Pretty scary, isn’t it? Because you should be in control of that hand, but instead it just hurt you. For no damn reason at all it just hurt you. And you didn’t see it coming.

That’s what today has been like. I was sad yesterday, and even more so today – my brain is giving me a major smackdown. I don’t know why. People often try to find reasons for me (“Oh, the weather’s changed,” or “It’s been hard for you with Teresa in the hospital.”) but really, today there is no reason.

So this is how I got through the day, and why I am able to write this post tonight:

-        I focused on people other than myself. I took the kids out to see their mom, and we all had brunch together. I gave apples to some of my neighbours. I spent time individually with my son and my daughter.

-        I got exercise. Even though I didn’t want to, I went for a run/walk. On the way I ran into one of my favourite people and her daughter. That really made the excursion worthwhile.

-        I spent twenty minutes stretching.

-        I did deep breathing.

-        I practiced mindfulness by learning something new (I took out my wife’s sewing machine, and with the help of YouTube, sewed two pairs of pants for my daughter’s “One Direction” dolls (Niall and Liam)). Concentrating so hard on something really puts me in the present, and focuses my thinking.

I didn’t do everything textbook. I ate poorly, for example. I also should have gotten some rest. But in the main, this worked for today, and kept the downward spiral at bay.

I am functional tonight, and will see what tomorrow brings. Hopefully, my brain will surprise me with a better mood instead of a punch to the face.

The Safety Net

My wife (who is also bipolar) has been off work for a year, and has had multiple hospitalizations while doctors work on finding the right combination of meds and therapy (she is getting better and better). I have been off work for two months while doctors try to find the right combination of meds and therapy for me.

The scary part is the slim chance that when you are mentally ill that you will never be able to work again. Then, your only option is to apply for disability.

We both have started the paperwork, just in case. That sucks. I don’t even want to look at the stack of forms. Even though I am confident that both of our treatments are working, and that we will be better, not working is still a scenario that is constantly in the back of my head.

We love our jobs. Our car accident and injuries have certainly slowed us down, and aggravated our illnesses. But we are both determined to get back to work.

Here’s what happens if, in the rare circumstance, we cannot.

I would receive Long Term Disability through my union, after a three month wait time following the expiration of my Employment Insurance (which lasts sixteen weeks – I have four more to go). The LTD isn’t permanent – it expires after a certain length of time.

My wife receives nothing, because she doesn’t have LTD through her job or union.

After my LTD expires, we would be forced to go on government disability, which pays a very small amount of money. Enough for the basics, but we would probably have to use the Food Bank and other charities. We would be living below the poverty line.

If we did not live in a housing cooperative, we would be forced to move somewhere affordable – a one or two bedroom basement suite in the suburbs, perhaps. Some government housing is also available, and because we have children we may have access to that.

In British Columbia, we are lucky – we can get our medication through “Plan G.” This program guarantees that people who need life-saving drugs get them, free of charge.

It’s a bleak picture to start the weekend, but this is how many people live. When you have a serious mental illness, this is what you fear. It’s the bogeyman that drives you to do whatever it takes to return to work.

So, I would like to thank politicians like Stephen Harper for guaranteeing more housing for the mentally ill by ensuring that state of the art prisons are being built across the country (a large amount of people who are incarcerated are mentally ill, and this gives them meals and a place to sleep – they have often stolen because they can’t afford either).

I would like to thank Mitt Romney for giving hope to millions of Americans by calling them wilful “victims” who wouldn’t be in their circumstance if it wasn’t for the government “enabling” them. I hope he gets elected so that a lot of mentally ill people wouldn’t be so lazy.

Finally, I would like to thank the governments of both countries for ensuring that our soldiers returning from overseas are getting the tough love that they need to fight PTSD, Depression, and other illnesses from combat. Bravo for encouraging them to ignore these disorders and stand on their own two feet.

I apologize for the bleakness of this post. I am feeling very depressed today. However it makes me very, very angry that the sickest people in our society are forced to fill out so much paperwork and contact so many agencies that some just give up. This just aggravates their illness.

We wouldn’t leave a cancer patient on the streets. We, through our elected officials, need to make certain that everyone has a chance to be well. This means streamlining the process to receive aid. Instead of firing so many public servants, resources should be redirected to help the afflicted.

I look forward to the day when a mentally ill, addicted or homeless person can walk into a single office – say “I need help,” and in an hour have housing, food, and treatment, with a goal to becoming employable. One stop shopping with no barriers.

This is a world that we can make happen.

That is a world I want to live in.

I hope that you do, too.

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).

Sleeping Pills

This post isn’t what you think it is.

I did try to take pills, once, but this is about a time when pills were forced on me.

I was generally very compliant in hospital, but one thing you learn quickly as a patient is to always check your medication. Your nurse will hand it to you in a little paper cup (like the kind you use to get your ration of ketchup at fast food places. I think ketchup costs them a lot more than the kind I buy. At least they’ve stopped handing it out in the tiny packages that hold a quarter teaspoon).

Anyhow, you get this little paper cup and the first thing you do is count the pills and look at the colours and shapes of them. You learn, for example, that a milligram of Clonazepam is tiny and reddish orange, while the half milligram is large, chalky and orange with a breaking line. Five milligrams of Loxapine is a lime green tablet with a breaking line. Lithium comes in a caplet – the ones with red are 100 milligrams, the half pink, half white ones are 300mg. And so on. You toss them back, and then the nurse makes you open your mouth to see if you swallowed everything.

One evening I spotted a tiny green tablet, only about two millimetres in diameter, hiding at the bottom of my cup. I hadn’t seen one of those before.

I stopped.

“What’s that? I’ve never taken this one before.”

The nurse picked up my chart (charts are gigantic binders, full of all sorts of notes, doctor’s orders, test results, etc. They don’t hang them on the end of your bed).

“It’s a sleeping pill,” she replied after a moment. “Your doctor ordered it this morning.”

“He never told me about it. He didn’t even ask how I was sleeping. I’m sleeping fine – you know that I am. I don’t want to take it.”

She looked concerned.

“Well, for some reason he decided you need it. Can you please just take it tonight?”

I held my ground. I never want to take medication that I don’t need.

“I’m sorry, Jodi, but I don’t need it and I won’t take a medication unless my doctor has talked to me about it.”

She frowned. “So, you’re refusing a medication the doctor ordered?”

“Yep,” I replied, folding my arms.

She was good. Instead of making a fuss, she made me do some paperwork.

I had to sign forms waiving the hospital and nursing staff of liability, and indicating that I was wilfully ignoring a doctor’s orders.

The next morning I saw my psychiatrist. “Why did you order sleeping medication for me?” I queried. I was a little upset.

“I just assumed you needed help sleeping, after all of the stress you’ve been through, especially going through seclusion.”

“Thanks anyways, but please don’t make assumptions. I’m sleeping fine.”

(I thought about that old aphorism – “You know what happens when you assume? You’re an idiot.” That’s my version, anyways).

During my stay, I discovered three more medication errors.

If you are ever hospitalized for anything (and I hope you aren’t), always check your own medications.

It’s better to know exactly what’s in that little paper cup than to not.

That’s why I’m so wary of fast-food ketchup.

The "Crazy" Word

Many thanks to Patti Dempster, who posted this as a reply in the thread about the word "Crazy."
With her permission, I am reposting it as a post in its own right, as it deserves to be.
 

I will take on the “crazy” word.

 

For me it depends a great deal who is using it and when. MI is a lonely illness. No one can see it so people who have not experienced it often carry a question mark around. People with MI can see the question marks. We can feel it and we will react to it more or less depending on the situation.

 

I have people in my life who know of my condition who I feel safe enough with that no words could offend me. We can even laugh together about some of the 'crazy' things I do or say. They can call me crazy and I will laugh right along with them. I have other people in my life who I desperately want to be in my corner and who claim that they are, but seem unable to truly “get it.” Their use of the word 'crazy' can trigger a meltdown on the spot. It means they don't buy it. It means they think I have a choice.

 

As I begin to melt and their discomfort becomes more and more apparent, the crazy word gets repeated. If not audibly it will appear in their eyes and in their body language. By now it is not the word that is the trigger but the ignorance behind the word. The fact that they don't get it (translation they don't really believe I have an MI) means they are taken by surprise when I am triggered and lose my centre (translation, act crazy).

 

In that moment in time I need their understanding, compassion and support. Instead what I get is a distancing with words and actions. An uncomfortable minimizing of what I am experiencing. A backing away and shaking of heads. All the while still having convinced themselves that they are trying to help me by making me see how crazy I am being. Telling me I am “crazy to get so riled up” in an attempt to settle me down.

 

Wrong move, Einstein! Now that is “crazy-making!” And that is when it hurts to the core. So unless people truly understand MI they should avoid language that can be misinterpreted and potentially hurtful to those who do.

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!

September Susan

(The person who submitted this to me has requested total anonymity. I would like to thank them for this beautiful, tragic and touching story).

September Susan

It was September and I was admitted into the Hospital Psychiatric Ward…..much to my dismay I was put in a four person ward with flimsy white curtains separating myself from the next loony! I had an air about myself where I believed I was too good for this place and besides I was really good at acting and convincing people I was really normal …or so I thought.  Perhaps I wouldn’t be here if I was so adept at acting or fooling people?  I would wait for a private room to open up and then I would be offered that so I thought. 

A day or two had passed and no private room was offered and I realized I was being punished or something by being left in this room!  I dispied the other women their smells and crazy chatter I kepted my curtains shut on a regular basis…no way was I going to even look at them!  Days passed and one day we got a new woman into the room. I could hear the nurse and her getting settled and I knew she was very troubled.  She too hid behind her curtain for days I never saw her only could hear her ranting at times and the smell was disgusting from her detoxing and I was mad that I had to endure this!  I would hear her crying a lot and pleading with God or someone not there? A part of me felt somewhat sorry for her she never got any visitor’s ever. 

After completing my 3 week stay I was released to go home on  my day to leave I packed up all my things,things I had collected since my stay…cards,old flowers,napkins with some loonie’s phone number on it saying “call me sometime when you get out” with a smiley face.  Rule number one Never make friends in a psych ward!  I continued leaving and on my way out I heard the woman crying I stopped and drew back her curtain expecting to see some crazed lunatic but not this case, I saw a beautiful woman with long brown hair and huge eyes looking so pained.

I asked her if she was alright? She replied I just need a quarter for the phone to call my kids and I have no money”  I went into my wallet and gave her a few quarters that I had and layed them on her bed.  She begun to cry some more and thank me over and over her name was Susan I found out. I said to her “everything will be okay Susan be strong and I put my hand on hers and then left. 

Weeks had passed since I was released and I picked up the news paper one day while sipping some coffee and flipping through the pages I came across a picture of a woman who to me was very familiar…it was Susan. It was her obituary…she had stood in front of a train and ended her 44 year old life.

I read on to find out she was a amazing mother and said she will love her children forever……My heart sank and I cried over her I cried for her children for not being able to do more for her.  I think of her every September when the trees change color and each leaf falls delicately to the ground I find the prettiest one and I take it home and press it and then I thank God for my life.