Tuesday, May 15, 2007

Reentering Life (Part 3)

What I think is so interesting and unnerving about this illness is that my entire life can change within a day. The moment I emailed my friends, it was as if I had begun linking anew to everyone.

Once again, the visual image of hibernating animals came to mind. At first I pictured bears in caves, waking up, and going forth into nature. Since they know that every other bear has been sleeping for months, reentering life is a natural part of their cycle. And that must be quite comforting.

When I looked up "hibernating animals" online so that I could learn about other animals, I found the picture on the upper left of a marmot who's on display at a $5 million marmot interpretive center in Europe.

Actually, I was jealous when I realized that scientists can raise this kind of money to study marmots and yet no one has funded a Bipolar Wellness Center. However, my envy quickly faded when I thought about reawakening from hibernation and finding myself in a glass case with a bunch or psychiatrists, psychologists, and medical residents starring at me.

All kidding aside, I think this is an important issue and one I don't want to diminish through humor. In my first post on reentering life, I said I believe it's okay to "drop out" for awhile. And I do feel that way. Maybe it's not the best response to depression but it's a realistic one. What was always interesting and disturbing to me--was that none of my doctors seemed to understand this.

So, I stopped talking about it. Since I'm an intelligent person, I obviously knew that "dropping out" was not the optimum response to a depressive episode. What made me angry was that my doctor's advice was so ridiculous. Yes, it's easy to say to a severely depressed person, "You should maintain relationships with your friends. You should continue to exercise. You shouldn't withdraw from life because it exacerbates the situation."

In response, I wanted to say, "Surely you realize that if I could do all that, I obviously wouldn't be clinically depressed. And your telling me to do this isn't helpful. How can I be with my friends when I cannot speak? Or do you not understand that depressed people physically find it difficult to talk? How can I exercise when I can barely get out of bed to go to the bathroom? Or do you not understand that depressed people have so little energy that it's almost impossible to get out of bed? How can I engage in life if I feel so debilitated that it takes every ounce of energy I have to engage with my son, who I love more than life itself?"

What would have been far more helpful was if any of my doctors could have said, "I understand how debilitating a depression is for you. I'm so very sorry that there is no medication that works for you. I'm so sorry that the pharmaceutical companies haven't been developing new mood stabilizers for bipolar depression or new antidepressants for bipolar depression, which won't throw you into a hypomania.

"But rest assured that all of my colleagues in the international psychiatric and psychological communities and all of our professional organizations have been participating in a huge letter-writing campaign to the National Institutes of Mental Health (and like organizations worldwide) about this. We've used our clout to force them to contribute $100 million annually to this effort and we won't let up until there are better medications for bipolar depression that are faster acting and don't have such awful side effects. We're also working hard to push through legislation for expanded insurance coverage and parity."

"In the meantime, I want you to know that we're offering new treatment options to try and accommodate your needs, and those of others, during your depressive episodes. Because you've survived so many depressive episodes--and I'm assuming I've told you how much I admire your resolve in doing so--with your permission I would like to enroll you in a pilot program that I think will be very beneficial for you. It's fully funded and we hope to replicate it on an international basis.

"When you're feeling truly despairing and can't come in for treatment, I will be offering online therapy sessions as well as a series of adjunct treatments. Because we know that depression is more debilitating that many physical illnesses, during a severe depressive episode, I will be sending a psychiatric nurse to your home once a week. She can take your vital symptoms and assess your situation. If necessary, she can have a bathing nurse visit you twice a week. When you're feeling better, we will start a physical therapy at your home. We recognize how important exercise is but we also realize that it's almost impossible for people who are deeply depressed. However, we've found that a gentle program of physical therapy works wonders.

"We have also learned that massage is a critical element of healing and I am prescribing a weekly massage. Although we know that deeply depressed people may not like physical contact, we have found that a masseuse with proper training (she doesn't expect you to speak to her) can make a big difference."

"We will also provide educational classes for your friends and relatives. We'll explain to them that we now understand that while people undergoing a depression need social interaction, they obviously can't communicate in 'normal' ways. So, we'll teach them how to be with you without talking. We'll explain the physical and psychological aspects of clinical depression so they can understand it. We'll discuss how sometimes, it just helps if they can sit by your bedside and read to you. And we'll also offer immediate family members, a wide array of services to help them while you're incapacitated."

Well, the fantasy is over but perhaps I'm making my point. For most of us who experience debilitating depressions, our needs are great but we are offered nothing but insipid advice. If we were truly given the services we need, we might not have to disappear for months on end.

But since we're not (offered helpful adjunct services) and we do disappear (and I believe it's okay given the circumstances), tomorrow I'll talk more about reconnecting with friends and relatives.

P.S. If you've thought of other services you'd like to receive during a depression, I'd love to hear about them. Quite honestly, I've just touched the tip of the iceberg here. Given how many depressions I've survived, I have quite a rich fantasy life.

(to be continued)


marja said...

That's great stuff, Susan. I know this is fantasy, yet so true about what some of our needs are.

Years ago, when my son was four, I managed to get my doctor to arrange for a nurse to stay with me while my husband worked. I was depressed to the point of psychosis and couldn't function. It was far better than going into hospital. Somehow - I don't know how - government health care supplied this nurse. (Today this is no longer possible.)

People with other illnesses or disorders are provided for the care they need by insurance companies and - here in Canada - often by the government. It's criminal that mental illness is not given the same consideration. It's the ugly stigma thing.

When is society going to wake up and understand the truths about mental illness and treat us the way we need to be treated? Why are we not given consideration equal to people with other illnesses?

My Pseudonym is Bipolar Chica. said...

What about the people who don't want to leave their homes or talk to anyone who calls and they're NOT depressed?

Mania can also cause bipolars to shrink from everyday life in response to anxiety over what will happen when they leave the house. Becoming a recluse may be due to spending so much money that they'll be in debt for the rest of their lives or they'll say something to someone that will depress them for weeks due to embarrassment.

Wouldn't it be swell if there was an actual drug that could completely control the mania as well? *sigh* Life would sure be simplier.

Bipolar Wellness Writer said...

Dear Bipolar Chica,
I've asked someone from the manic side of this illness to respond to you. My understanding is that the mood stabilizing medications like lithium, Tegretol, and Valporate are much more effective for manias. But this is only from research, not from first-hand knowledge. So, I'm hoping other people will respond to your comments.

Thanks for writing! Best of luck!


jane said...

When I clicked on your blog today, I had no idea I'd be here for an hour! (because I chose to) I've kinda read these posts out of order & have jumped to Marja's & Syd's blog...*whew*
I wish your "fantasy" could be printed & sent to every single psychiatrist. I agree with what Marja said, it's the stigma. I believe society still looks at mental illness as though it's our own fault.
I am not a manic type BP, so I can't reply to chica, but I take neurontin as my mood stabilizer.

To someone reading your last 3 posts, the interjected humor was perfect! As I read it, I thought, "I'd be glad I wasn't stuffed, too!"

Bipolar Wellness Writer said...

Thanks so much. I appreciate your kind words. I,too, agree with Marja and hopefully at some point I'll do something about it. I just can't figure out how...yet.


Polly said...

I wish your fantasy would come true. I bet there are a lot of people who would actually improve significantly if it did.

There are drugs that completely control mania for many people... but the same drugs usually also make them gain weight, be tired all the time, and forgetful, and nauseous, and sometimes develop diabetes...

Bipolar Wellness Writer said...

Actually, now that I reread it, I see that I mis-represented myself in my comment to bipolar chica. I've taken lithium, Tegretol, and Valporate. Like Polly, I know all about the awful side effects.

What I meant was that I don't know what it's like to be "manic" on a regular basis. For years, I was hypomanic (but that was medication-induced).

What I can't relate to are the manic symptoms that biopolar chica refers to, like "staying at home because of a mania" or "spending so much money that I would be in dept for the rest of my life."

While I overspent a bit, at the time we were a two-income family with no children. When it seemed like it might be getting excessive, I cut up my credit card and gave my checks to my husband (until I could self-regulate). I haven't had a problem with this in years so perhaps someone else might speak to this.

If the manic folks want to talk about staying home during a mania, or perhaps have already written about it in their blogs, let me know and I'll refer bipolar chica and others to your posts.


My Pseudonym is Bipolar Chica. said...

I know that there are drugs that are "supposed to" control mania. But, unfortunately, they do have side effects that can be debilitating.

After only a few weeks on Seroquel and then Zyprexa, I was diagnosed with diabetes. I also developed akathisia each time I took the medication. Even though I've vowed to never go to a hospital, I found myself begging my husband to take me to one due to the "I'm going crazy" anxiety.

Now I take Zyprexa whenever hypomania rears it's ugly head (PRN). It doesn't always take away all the symptoms, but it does help a bit.

As for staying in the house...that's a new one for me. It may be related and it may not. I often don't want to leave the house because I'm afraid that something out there will trigger a mood change.

However, the spending is related to mania. I once spent $15,000 in a 6 month period and I have no idea what I bought. Fun times.

Thanks for the comments and the topic!