Waiting, waiting, and it’s doing me in

As I keep waiting, wondering what medication I will be taking in the future, what side effects it will give me and if it will do anything to slow my MS, life hasn’t stopped. I keep going to work everyday, to my weekly yoga class, I keep going out occasionally with friends, I keep spring cleaning even though it’s summer now and wondering how to give my apartment some final touches (it’ll be four years on Tuesday since I moved), and I generally keep doing what I normally do. And I keep waiting. Continue reading

The Noonday Demon

transferirMay is mental health awareness month, and I thought I’d post something about this book I read a while back, because I think that pointing people to resources is also a way to raise awareness. This is a book about depression, and it covers pretty much everything on the topic you might want to know, find out, debate or are simply curious about.

We’re in 2015 and I still read online people saying you don’t need to take anything for depression because you can manage it naturally. I witnessed my mother going into an almost catatonic state due to depression and I can guarantee there was no herbal tea, meditation or yoga that could have taken her out of it. Continue reading

When meds turn you into someone you’re not

decompensation

Also found in: Medical, Encyclopedia, Wikipedia.

de·com·pen·sa·tion

(dē′kŏm-pən-sā′shən)

n.

1. Medicine The inability of a bodily organ or system, especially the circulatory system, to maintain adequate physiological function inthe presence of disease.
2. Psychology The inability to maintain defense mechanisms in response to stress, resulting in personality disturbance or psychological imbalance.
Decompensated in the psychological sense of the word – that’s how I’ve been feeling this past month. This could be due to several different reasons, maybe to bits of all of them together, and I’ll never really know for sure. I suspect stresses from work may have something to do with it. But I also suspect that having gone off of antidepressants is also playing a part. A big part. Someone pointed out to me that, although I discontinued fluoxetine according to my psychiatrist’s treatment plan, that treatment plan was designed assuming I was quitting fluoxetine while starting paroxetine, which I never did. So technically I can still be on a rebound, with all the chemicals in my brain doing the polka and the can-can.
For the past month, my sleep has been a total mess. I either spend the entire night waking up, tossing, turning and falling asleep again, or I wake up early and don’t go back to sleep, or I go to bed late because I don’t feel sleepy and then getting up the next morning is almost impossible. Sometimes, despite this lack of a stable sleeping pattern, I don’t feel tired. Oddly enough, sometimes I feel energized. Like I’m anxiety-fueled and a time bomb ready to go off.
Concentrating on anything has been a real challenge. I need to finish my college paper, and, really, all that’s left to do by now is write two closing paragraphs, put together the bibliographical references and come up with a nice cover. How hard can that be? Apparently, very hard. I can’t focus. All I want to do is finish the paper so I can move on to other projects piling up in the back of my mind, but somehow time is flying and I don’t really know where it’s going.
And finally, the mood swings. Mood roller-coasters. I’m running a full gamut of emotions every day, sometimes in just a couple of hours I can go from sad and despaired to confident and empowered, from nostalgic and lost to euphoric and foolish.
But this is where it gets interesting – and dangerous. If this description sounds like a nightmare to you, it doesn’t feel like a nightmare to me. If anything, it feels like coming home. This person that doesn’t know a good night’s sleep and that is incredibly moody and sensitive is the person I’ve always known myself to be. These past four years on antidepressants were like trying to be someone that I’m definitely not. They stabilized lots of parts of me, yes, but they also made me more numb. And a heart beating doesn’t translate into a flat line.
The thing I’m most angry about, though, is that I feel all this was for nothing. I’m not healthier because I’ve been taking all these meds. My relationships weren’t more functional because I’ve been taking all these meds. I don’t see much results. I tried to be a version of me that I believed, based on what people told me, that would be more acceptable, healthier, saner, more functional, better for me. Yet, people kept telling me I can’t be the way I am. By people I mean specifically family and ex-boyfriends. No matter how much I tried, how much I sought help, no one really gave me a break. I was still too intense, too dramatic, too high maintenance, too preoccupied.
So I’m giving myself a break. All my life I’ve been hearing I can’t be the way I am. “You’re too shy, you can’t be that way or you’ll never get anywhere in life.” “You’re too slim, you need to put some weight on.” “You’re too hard on yourself, that’s bad for you.” “You’re too rational, you need to express your emotions.” “You’re too emotional, you need to sober up or no one will put up with you.” Now I don’t need pills to tell me who I should be as well. So what if I’m all that? These are just characteristics. Depending on the context, they can actually be assets.
It’s really no use for me to know a lot about mood disorders, family backgrounds, all kinds of therapies or even MS if I don’t know my own soul. Sometimes you have to go back to take a leap forward. And right now, it feels really good to revisit that place, that person who wasn’t afraid that making mistakes might put her in a wheelchair.

Continue reading

Downward

Tomorrow it’ll be two months since I started taking fluoxetine. I’m hoping I can catch my psychiatrist on the phone because things aren’t looking good. I’ve been feeling more and more down, and I haven’t been able to do much because I’m always so tired and when weekends come I just sleep.

As usual with depression it is hard for me to identify the feelings that are bringing me down because everything feels so mashed up inside my head. Thoughts become intricate and confusing, vision narrows, breath seems to become shorter. I cry a lot. Fatigue worsens. I forget to take my daily injection. And when my mom called last night a little tipsy from dinner and making up silly jokes, I didn’t feel like laughing. And believe me, my 67-year-old mom is the funniest sweetest thing when she drinks just a few drops of red wine and immediately starts acting like a silly drunk lady. But I’m just so out of tune.

I’m writing because I’m trying to break things down so I can make sense in case my psychiatrist wants to see me. So what is really squeezing my lungs, heart and guts and making me just want to cry?

Uselessness. Suddenly I look back and everything I did this year seems worthless. What am I going to take from my post-grad? Not a new job, by the look of it. This blog? What’s the point? Everything I read? I’m not becoming healthier or saner just because I know a lot about neurology and psychiatry. And what about next year? I’ve been thinking about projects. I want to write a book that I’ve been carrying with me since last year. And I want to write another book to raise awareness for MS. But even if I get them published, will they reach anyone? Will they make a difference? I also want to start taking my master’s in September. But I’m not sure I will be able to survive such a busy schedule, so why do I even bother? And I want to do some volunteering, but will I add anything to anyone’s life? Because, you see, I’ve been feeling. . .

. . . Unable to connect with people. Classes ended, and I will still see my class mates at least once more and we’re all friends on Facebook and all that. But in the end of the day, years will pass and no one will stay. Everyone will go about their businesses and I will be just another forgettable person they once knew briefly. Everything moves so fast and is so ephemeral. Yesterday I was thinking about relationships and unfaithfulness, and it made me so sad to realize we treat most people like objects. We come in, just take and take and take, never give anything, we play and leave the toy there. And I’m one of those people in need of so much more. Human touch. Human warmth. Deepness. Safety. Little details. But I don’t trust anyone. I’m disillusioned. And I don’t go out much because. . .

. . . MS is preventing me from being so much more. I go to work everyday and it takes all my spoons. I feel miserable because my life has become just work. I miss going out after work for a coffee or maybe dinner with my closest friends. I miss them, miss their support, miss our jokes, and I miss being there for them as well, being the loving and caring friend I suppose I used to be. But I just don’t have the energy. I sleep 9 hours on weekdays and 12 on weekends. If I don’t, I don’t function well enough in the real world. But that doesn’t leave much room for anything else, does it? And I never thought my life would become so… sterile.

I’m in the middle of the tunnel. I feel I’ve been swallowed by this darkness I didn’t see coming. I think I kept myself so busy this year in order to mask all this darkness. I feel like these two.

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Creativity and mental illness – or me and my demons

I saw this article, Secrets of the Creative Brain, on the blog Side by Side in Mental Health. It took me some time to read it, because it’s a bit long, but I found it curious. Although it didn’t answer some of the questions – the study is ongoing – it does shed some light on the type of research and techniques that are being used to find out more about creativity and mental illness.

For me the link between creativity and mental illness has always been there. I grew up in a family whose members were all intelligent and creative but also suffered from different mental illnesses. Me, I’m no exception. I always saw myself as very creative and smart. I taught myself to read and write and at 4 I wrote my first poems. Yes, they were full of spelling mistakes, but they rhymed. In elementary school I started writing a collection of books much like the Nancy Drew mysteries. As I reached puberty, I created a magazine for teenage girls and started writing “serious” novels. At 15 I convinced my mother to buy me a guitar and find me guitar lessons. So until I finished college I wrote dozens of songs and hundreds of song lyrics. College was very prolific. I wrote poems in Portuguese, English and French. I decided I had a very short breath when it came to writing and went on to write dozens of short stories. I’m still proud of some of them after all these years. After college I started working full time and realized I missed being a sweet child who did ballet, so I went back to dance classes. Sometimes I still fall asleep making up dance routines in my head (that I obviously don’t remember anymore when I wake up the next morning).

I took my bachelor’s in Literature, but I could have taken anything else as long as it wasn’t anything related to design and graphic arts (I couldn’t draw a decent picture even if I had a gun pointed at me). But I was good in Math and Sciences. I used to solve equations much like I solve Sudoku puzzles now – just for entertainment. I’m fascinated by Physics, Biology, Neurosciences, Psychology, History, Philosophy, Cinema, Photography, you name it. I could be talking about the Higgs Boson one minute and the other minute I’m talking about Freud.

But of course there’s this whole other side. Anxiety consumes me. In the 9th grade I remember spending most of the mornings crying. It was the first time ever that most of my classes were in the afternoon and I realized that unless I’d wake up early in the morning and turned on the autopilot, this inexplicable darkness would fall over me. I think this was the first time I experienced being depressed. Shortly after that I started suffering from insomnia. Some years later when I was 20 I got so depressed I thought about killing myself. This thought would haunt me again at least twice in the following years. During my 20’s I also worried about my needing alcohol to relax. It ended up being just a phase but it was scary. I wasn’t drinking a glass of wine or two because I liked it, I was drinking because I needed it. And of course, there was that weird memory loss I wrote about earlier.

I live with many ghosts. My grandmother had paranoid schizophrenia and so did one of my uncles. My other uncle is an alcoholic who also lives with bipolar disorder. My mother and her older brother both suffer from severe depression. My sister lives with social anxiety, and falls in the borderline category. Today I found out my neuro described me as bipolar to another neuro. My first reaction was, “Why has everyone kept this a secret from me all these years?” Then I realized she probably just mistook my anxiety for mild mania. I’m anything but bipolar because I just don’t have the energy for euphoria. I don’t steal money from my relatives to spend on god knows what and I don’t disappear for days and end up calling people to tell them I’m in some city many miles from home. My uncle does this and more. But my first reaction was to doubt myself. My first reaction was to think my psychiatrist, my therapists, my mother suspected I was bipolar but didn’t tell me. And then I realized there’s maybe a little paranoia in this thought. Just a tiny word written on paper, and suddenly all the demons I’ve been living with waved at me.

But you know what? Maybe I have a little bit of all these conditions living in me. And maybe they’re adaptive, as in one of the characteristics is more prominent during a specific time in my life, only to fade away and make room for another characteristic as I go through something different. Lately it’s like daydreaming and dissociating are helping me cope with stress, but I remember when I bought my apartment and moved in by myself compulsive behavior helped me deal with the fear of whatever might go wrong before I got used to being on my own. As the author of the article recalls, “Heston and I discussed whether some particularly creative people owe their gifts to a subclinical variant of schizophrenia that loosens their associative links sufficiently to enhance their creativity but not enough to make them mentally ill.” Maybe this will prove to be true in many areas, and my demons will finally be able to rest.

Lonely

lonely-198x300

~Even with close friends. . . even with people I’ve known for decades, who I still know, it’s just sometimes. . . something’s not there.~

~Harry Stack Sullivan, for instance, one of the leading psychiatrists of the twentieth century, described loneliness as a state of simply not having one’s emotional needs met, of being caught in a situation characterized by the “inadequate discharge of the need for human intimacy.”~

When I started reflecting and writing about my hermit mode, I also searched for what others were saying about loneliness and aloneness. I ended up purchasing this book and when it arrived I couldn’t put it down. What makes it so enjoyable, interesting and easy to read is that Emily White perfectly intertwines research on loneliness with her life story. Up to a certain point I was surprised by how many things I seemed to have in common with her. Divorced parents and a distant father, long periods of solitude during childhood (though for different reasons), a normal social life during high school and college but not really connecting, and finally a job that involves spending long hours alone.

The author makes it a case that chronic loneliness should be considered a mental health issue, much like depression, as there is genetic evidence some people are more prone to it than others. Studies also suggest that chronic loneliness can lead to cognitive and behavioral changes, high blood pressure, early dementia and several other ailments. She also stresses that loneliness and depression don’t necessarily go hand in hand. You can be depressed without feeling lonely, and you can be lonely without being clinically depressed. Either way, there is such a stigma about lonely people (they lack social skills, they are unattractive, they are psychopaths planning their next murder, it’s their fault they’re lonely and so on and so on and so on) that no one talks about it and raises awareness.

Lonely people feel ashamed of their state, and they have reasons for it. And here comes one of my favorite parts of the book. The author criticizes much of the self-help literature out there because it makes the lonely person feel responsible for their pain. Some of it glorify solitude as a chance for self-discovery and self-nurturing, totally missing the point. The other half takes another approach by telling lonely people that “it’s in your hands,” “it’s within your reach” to make yourself feel better, as if you can overcome by yourself things over which you have no control. This is particularly dear to me because I fell in that trap. Thankfully my therapist deconstructed that ingrained belief because I used to feel responsible for everything that happened to me and in my life. I felt responsible for being sick and sometimes I still feel responsible for my MS not listening to me and to how I take so much better care of myself now. (Like “what am I doing wrong?” Answer: nothing.) The truth is unemployment, poverty, illness, and other factors can cage people in, and sometimes there isn’t much they can do.

The book ends on a bittersweet note. Much as I thought would happen with multiple sclerosis, Emily White thought that after reading and researching so much on loneliness she would be able to keep it at bay. But although she overcame the worst of her loneliness, she still feels it lurking, waiting for a moment she looks away to settle in again. And once again she says that maybe, in this case, help can only come from the outside.

 

More medication changes?

I saw my psychiatrist today and I obviously had to update her on the latest developments about my health. So from there we started talking about what this all means in terms of my mood and sleep. I haven’t been sleeping well since those steroid infusions, but I’m confident my sleep will be back to usual patterns as soon as the steroids wear off, which, according to my neurologist (and my weird nights) hasn’t happened yet. So for now I’m going to keep taking trazodone at night.

Now for my morning pill. I’ve been taking escitalopram for some time and I’m quite happy with it. In fact, about a year ago, when I felt better and more stable and suggested my psychiatrist should take me off of it and see what happens, what happened was I stopped sleeping again. Escitalopram, being an antidepressant designed to treat anxiety as well, has been doing wonders for my insomnia, which has a lot to do with anxiety.

However, I haven’t been feeling anxious lately. At all. Instead, I’ve been dealing with everything by hiding from the rest of the world, feeling demotivated and generally more sad. So she thinks it might be a good idea to try something more uplifting, as in fluoxetine. That is, Prozac. Oh dear. 😦

Depression is a disease of loneliness

I already shared this article on Twitter but I thought I’d share it here too.

It’s by Andrew Solomon, whose TED Talk swept me away some months ago, and I must confess I feel a little guilty because I haven’t yet started reading his book on depression, The Noonday Demon. I was delighted to find his new article on The Guardian though. As with his TED Talk, the words are vivid, fluid and meaningful, and he addresses many of my feelings, concerns and thoughts about depression.

Here are few:

“In an era in which Facebook has made “friend” into a verb, we often confuse the ambient intimacy of websites with the authentic intimacy that comes with sharing your life’s challenges with someone who cares – who will be sad because you are sad, happy because you feel joy, worried if you are unwell, reassuring if you are hopeless.”

“[…] but not treating the depressed is ultimately more expensive than treating them. People who cannot function end up on the dole; parents may not be able to take care of their children; men and women too depressed to sustain their physical health could develop serious conditions that cost the NHS a great deal.”

“Depression is a disease of loneliness. Many untreated depressives lack friends because it saps the vitality that friendship requires and immures its victims in an impenetrable sheath, making it hard for them to speak or hear words of comfort. […] Love – both expressed and received – is helpful, not because it ameliorates the symptoms of depression (it does not), but because it gives people evidence that life may be worth living if they can only get better. It gives them a place to admit to their illness, and admitting it is the first step toward resolving it.”

“Many people, however, are desperate for love, but don’t know how to go about finding it, disabled by depression’s tidal pull toward seclusion. Loneliness will not be fixed by medication, though pills may instigate the stability to open up to friendship’s liabilities: potential rejection, exhausting demands, the need for self-sacrifice.”

Full article here:
http://www.theguardian.com/commentisfree/2014/aug/16/depression-disease-loneliness-friends?CMP=twt_gu

Seeing mental illness

Anxiety Holding Me Back, by Samantha Pugsley
Anxiety Holding Me Back, by Samantha Pugsley

Just found out about the Broken Light Collective, an online photography gallery for and by people living with or affected by mental illness. Absolutely stunning contributions there, I’m already following.

Read the New York Times blog to learn more about this project.

What the Therapist Thinks About You

Have you ever wondered what your doctor or your therapist writes about you? And would you want to read it? I certainly have thought about it, though I’m not sure I would want to know. Probably my low self-esteem, my insecurities, and my lack of trust fear that my therapist is writing nasty things about me while telling me the opposite. Or maybe knowing my behavior patterns have names, some of them weird and scary, carries with it a sense of stigma I surely don’t want to feel. Besides, names make things sound definite, like you won’t be able to change them. On the other hand, maybe reading my therapist’s notes could give me a sense of progress, more structure, and possibly even a boost to my self-esteem. I don’t know.

Last night I saw on Twitter this New York Times article that debates the pros and cons of sharing physicians and therapists notes with patients. There are some very interesting points made there. For instance, one woman with multiple sclerosis “finds that her medical and mental health notes complement each other.” I also found interesting how some therapists are increasingly using the internet to connect and help their patients. Makes it look like a true team effort, and not like we’re people who cease to exist as soon as we leave the office.

What about you? Would you want to know?