Black Friday – as in sad and depressed

I really don’t know what Prozac is doing, but I cried more times this week than in the entire year.

First, I went to the hospital on Monday, only to find out that I won’t start Tysabri until January. Since mid-September I know I need a more aggressive drug than Copaxone. That’s three and a half months waiting, worrying about possible side effects and living with that little anxiety that the unknown always seems to bring.

Tuesday I received a phone call. In August I had applied for the Believe and Achieve Project, a project created by the European MS Platform aiming to give employment opportunities to MSers under 35. The position they had in Portugal had everything to do with my project in college, so I applied. I didn’t think they would call me for an interview because they would probably pick other MSers who were unemployed, which is not my case, but they did, the interview went really really well and I hoped I would have a chance. But on Tuesday they called telling me that, while I was perfect for the job and they really liked me, they ended up choosing someone who, due to limitations, would probably never get a job anymore if they didn’t give him/her that opportunity.

Now I want to make things clear. I’m happy for the person who got the job because everyone deserves a chance regardless of their limitations. But I’m confused. I have rejection issues and I think I’ve always been rejected because I’m not good enough. This was the first time I was rejected because I was too good. Fear of rejection just got worse for me. And that sense of non belonging I’ve been living with all my life was highlighted once more. I don’t feel well enough for many things, but I’m too well for others. I’m in this limbo, disconnected. Where do I belong? Some people say that the more rejections the easier it gets. But it’s not getting easier for me. I just feel like not trying anymore. That’s probably what separates the depressed and the non-depressed. Helplessness.

Then the nightmares started. I dreamed doctors told me my mother only had a week to live and I didn’t even have a chance to think about what that meant because I mobilized all my energies into trying to make that week the most comfortable it could be for my mom. Then I dreamed that I was sitting on a wall and I suddenly lost consciousness for just a second. When I regained consciousness, I was falling. And finally I dreamed I found out some nasty secrets about this guy I fancy. It’s funny because every time I see him again after some time, I get bad dreams. Last month after I saw him I dreamed my father and stepmother were getting divorced. Today was about dirty secrets. Either case, they were dreams about loss.

There’s also a funny thing that happens when people like me. Officially I won’t be filling my new job position until next year, but I’ve been in training. I ended up getting along well with one of the people I’ve been working with. Today he left for three weeks away on vacation but he left me some books of his. And while it’s great to have new stories to read, I can’t help but to feel that it’s a burden when someone likes me and cares about me.

And you’re gonna have to pardon my French now, but I think I’m seriously

fucked

up.

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Pain

~ Pain is useful to the extent that it motivates us to modify our behaviors in order to reduce whatever insult is causing the pain, because invariably that insult is damaging our tissues. Pain is useless and debilitating, however, when it is telling us that there is something dreadfully wrong that we can do nothing about. ~
Robert M. Sapolsky, Why Zebras Don’t Get Ulcers

 

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.

 

New definition of exhaustion

Last Saturday, as I mentioned on my last post, I had to sleep 11 hours out of complete exhaustion. I thought Sunday I would feel refreshed and ready to continue to fight my battles but I ended up sleeping 12 hours. I only left my apartment last weekend to have dinner at my mom’s on Sunday. She said my eyes looked really sleepy but I was in a good mood and the dinner went well. Monday morning I didn’t hear the alarm because I was in a such a deep sleep. When I finally got up, I went to the kitchen first and then went to the bathroom. I have a vague memory of a feeling of nausea taking over my body and then the lights went out. I passed out.

This was probably caused by low blood pressure. I usually have low blood pressure and spending most of the weekend in bed probably didn’t help. But what I find funny is that I woke up, and as I didn’t know where I was or what happened, I let myself blackout a second time. This to me became a new definition of exhaustion – when you let yourself lose consciousness because trying to figure out where you are and what happened is such an effort you don’t even try. I was actually quite comfortable with my system shutting down. Losing consciousness is apparently the only way to make sure I don’t worry about anything. It’s the only way my mind actually takes some time off. Because even when I’m sleeping I’m in such distress. Last week one night I dreamed I was being stalked and another night I dreamed I was trying to kill myself. Last night I dreamed I was running because I had witnessed a crime and they were after me. It involved running down endless flights of stairs and finally trying to escape on a motorcycle (never drove one in my entire life). I haven’t been watching movies or TV (no time for that) so I don’t think that could be an influence. But I can’t figure out my subconscious agenda either.

When I woke up the second time I managed to get up. I realized I had bruises on my knees, shoulder and face. I also cut my lip. I think I literally fell on my face. Had it been more serious, I wonder what it could have happened to me. I live by myself, so how long it would have taken for someone to help me if I could not do it myself? Better not even think about it.

Supposedly, my psychiatrist took me off escitalopram and put me on Prozac to help me be more “up”. When I first started reading about MS, I learned that Prozac is one of three drugs sometimes prescribed to help with fatigue. I don’t know what Prozac is doing, but I’m certainly not more “up” and I’m certainly not less tired. I don’t think that was the deal.

Speaking of meds, I finally know what my new MS drug is going to be, after failed attempts with Avonex and Copaxone. It’s still going to take a while before I start, but I will sure keep you posted.

Copaxone and I

Copaxone and I will part ways soon but at least we get to celebrate our 2 year anniversary together. This was one of the most peaceful relationships I ever had.

I remember meeting the nurse who introduced us. It was a Saturday and she came over after lunch, armed with the auto-injector. Everything I needed to know was really well explained and I got to give myself my first shot on the right arm. Now, you don’t feel the needle or the liquid going in, but after a couple of seconds, when the drug starts spreading under the skin… boy it hurts. It’s like taking one of those nasty vaccines that leave you feeling sore, except you take Copaxone every day. But well, there was an ice pad ready to cool off all that passion Copaxone showed for me and then I went about my business.

I was afraid of having terrible skin reactions as I’d seen pictures on the internet. However, when I got home some hours later and took off my sweater to have a look, apart from a little swelling everything was fine. I remember looking up at my ex-boyfriend and saying “I made it,” like I’d just finished the marathon or something. And this was the beginning of a love affair that celebrates 2 years now.

During these two years I never had side effects worth mentioning, which was a great improvement from the ten months I’d spent before with Avonex. My nurse told me some time later that she never expected things to go so well. I had everything against me: my skin is very white and thin and it bruises easily. Furthermore, I don’t have much fat, and fat is good to absorb Copaxone without leaving lumps. But against all odds, months went by and being with Copaxone every day was never an issue. I got used to the daily injections and even taking it out with me, though I confess I forgot to take it on one or other occasion.

Unfortunately, I’m going to have to leave this happy relationship. Copaxone is just too peaceful and quiet to be able to keep my ms from violating the restraining order. I’m hoping I can finally start a drug that is aggressive to the disease and kind to me. Fingers crossed.

 

“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.