Hairy chainsaw massacre

Because I was born in a family where mental illness is common, in some ways I had to grow up fast. That means I didn’t get to do some of the very very stupid things teenagers do, because I had this huge sense of responsibility and consequences. And that means that today, fully grown up, I find myself making some really stupid mistakes. Like a teenager. Continue reading

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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More awareness

copyright (c) silvia grav photography
copyright (c) silvia grav photography

The Huffington Post published earlier this year an article titled 50 Sufferers Describe Depression For People Who’ve Never Been Depressed, and I must say wow. Some of the descriptions are so powerful that if I were any good at visual arts I would definitely portray them. This collection not only shows what depression is about but also shows the many different sides of it.

I hope it raises awareness. I hope people are inspired by this to raise more awareness.

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.

“I hope you have the courage to break the sound barrier.”

I had to sleep 11 hours today out of exhaustion, and I know most people wouldn’t understand. Even if I told them I work full time and I’m currently going through changes at work, that I have classes at night and spend most of my weekends researching and writing my final paper for college, that I have to manage my apartment building affairs to which I was appointed this year, that I struggle with two chronic illnesses plus some mental issues, while trying to keep exercise and social life at an acceptable minimum, they would still go, “Oh, yes, my life is pretty rough too but I get by with seven hours of sleep.”

So this is a TEDx Talk I found that sums up in 15 minutes some of the things we chronic illness sufferers feel and go through. It’s about Lyme disease, but it could be about multiple sclerosis, endometriosis, mental illness and many other conditions. It’s worth taking a look.

Careful what you wish for

12 years ago today, October 20th 2002, I woke up, went to the kitchen in my pajamas, Sunday morning, made breakfast, went to the living room while eating it, flipped the pages of a magazine, got up again, put the mug and plate in the kitchen sink – and then everything went black. I have a very faint recollection of feeling dizzy and nauseous but I don’t remember any more. I know I walked three or four steps because I was found on the floor by the kitchen door. On the wall there was a mark my fingers made possibly when I was trying to hold on to it not to fall. But I don’t remember. No one knows how much time I was out. My left knee and arm were bruised, and so was my head.

The story they told me was that my grandfather, who was living with us at the time, heard me crying and found me on the floor. He called my mother who was in the bathroom taking a shower and she realized I was in a disoriented, confusional state. My short term memory was gone. The last weeks of my life were gone. She called her therapist who told her to take me immediately to a hospital. She asked me my best friend’s number, which I gave her by heart, and called her to know if anything might have happened in my life that could have caused such a shock, such confusion, such dissociation. My best friend and her mother then joined us at the hospital.

At the hospital they gave me something to drink that I suppose was a sedative. It must have been strong because I remember drinking it and my tongue tingling. I was seen by a neurologist although I don’t remember talking to him. I remember getting up from the CT scan, putting my glasses on and seeing a really tall and really black doctor in the corridor looking in with concerned eyes. I didn’t know who he was but that image stuck with me. He made me feel safe somehow. Later on I asked my mother if she knew who he was and she told he was the neurologist who’d seen me and that he’d spent a long time talking to me. I don’t remember any of this, I just remember seeing him in the corridor and the look in his eyes.

While we were waiting for the results, I remember asking myself, completely puzzled, why I was wearing glasses if I never leave the house without my contacts, and why I wasn’t wearing a bra, another thing I just don’t go out without. I didn’t remember that just hours before my mother had dressed me to take me to the hospital and she wasn’t going to be bothered with bras and contacts. Similarly, I asked everyone what time it was. People told me it was 3. And I asked them “am or pm?” Then I wanted to know what day it was. They told me Sunday, October 20th. Bewildered, I remarked, “October 20th? Then my birthday was three days ago…” I saw everyone’s faces lit up. They thought I was going to remember. “Yes, sweetie, your birthday was on Thursday.” I searched inside my head but had to give up. I didn’t remember.

Finally the results showed no abnormalities so they shipped me to psychiatry. While I was waiting to be seen by a psychiatrist I saw my ex-boyfriend’s number written on my friend’s hand. She had asked me for the number and I had given it to her but again I didn’t remember. It was easy to think this could all be psychological. My ex-boyfriend and I had broke up two weeks before, I was hurt because he hadn’t even texted me on my birthday, and we had been together the day before so he could give me back some things I’d left at his place. This is why my friend wanted to call him so she could know if anything had happened the day before that could have led to something so drastic. But no. We had quite a peaceful meeting.

However that wasn’t the only reason I was sad. My mother and I weren’t speaking to each other then, and our family was going through a rough time with my grandfather being ill and living with us. Plus, my third year in college had just begun that week and I was feeling lost. I knew I didn’t want to be taking that degree but I didn’t know what I wanted to take. If I were to change, that was the occasion to do it because it was right in the middle of the four-year degree. But I didn’t know what to do, so I kept going. My English teacher had given me an assignment for Monday, which consisted in an analysis of a science fiction short story. In the story, the main character’s memories were stolen or lost, I don’t remember anymore, but I remember thinking, as I was working on it before meeting with my ex-boyfriend, something like “How nice it would be if I could just forget some of the things that happened in my life lately.” To this day, I’m really careful about what I wish for.

Then came Sunday. Despite not being in a good place in my life, I woke up feeling happy because I had plans to be with my best friend. I wasn’t going to be stuck at home feeling bored, lonely and sad. And then it all happened. At the hospital the psychiatrist gave me some sedatives for emergencies and told my mother I should seek therapy. I went home, ate dinner, went to bed, slept for twelve hours, and when I woke up I started putting together the memories that were slowly coming back. The next days I managed to remember everything except for much that happened on Sunday.

I still don’t know what happened. No one ever gave me a clear explanation. My family doctor afterward ordered a lot of tests to rule out possible physical causes. I repeated the CT scan, had and EEG, an echocardiogram, a Holter test and blood tests. Everything came back normal. The only test that was missing here was an MRI. I wonder what an MRI would have told had any doctor remembered to order one. Judging by the fatigue, it’s likely I already had MS. How many lesions, if any?

To this day, what happened 12 years ago is still the scariest moment of my life, scarier even that hearing a multiple sclerosis diagnosis. When you lose your memory you lose parts of your identity, you lose a sense of self, you lose reference points, you lose anchors to hold you, you lose cause/effect sequences that help you make sense of the world. Was it purely psychological? Was it plain dissociation? Was it a defense mechanism in a very stressful moment in my life? Is this what happens when I can’t handle the pressure even though I think I can?

The reason I’m remembering this is because I have been worried about me lately. I have been dissociating more and more. The other day I was driving, I got lost in my own thoughts, and suddenly I realized I didn’t know where I was going and I didn’t remember how I got there. I recognized where I was, but it wasn’t the place I wanted to drive to. It’s like I fell asleep but kept driving. Should I worry or this too shall pass?