Dissonance

My recent bout of insomnia, that I relate to the anxiety and change of routine caused by my master’s classes, has been met with skepticism from everyone from my mother to my therapist. I see them frown and ask, “Couldn’t this have something to do with Tecfidera?”

The taking of the full dose of Tecfidera coincided precisely with the beginning of my classes, so there was really no way to be sure unless I talked to my neuro, but I know deep inside in my gut that these past two months of insomnia have everything to do with anxiety originated by classes. Because I feel anxious, that restless feeling inside my chest that is so familiar. Because when I wake up in the middle of the night is usually due to some nightmare. Because I’ve been living with myself for the past 33 years. Continue reading

Then the fog came

As I’m nearing the end of my holidays, I can’t help but to think about how they went compared to my expectations.

I drove here with a heavy heart. Filled with loneliness, sorrow, completely lost. Feeling invisible to the world, immaterial. I couldn’t think because there was so much background noise back home. So much to deal with, to go through. My head was foggy, groggy, couldn’t focus. I hoped to be able to think a little more clearly. But I’m not sure I accomplished that goal. Continue reading

What about now?

The last time I really fell head over heels with someone I didn’t feel tired. Me, the one who was always tired and didn’t even know why, found energy where there was none, found ways to continuously pick herself up because body and mind were so light. Does love cure all? No, I don’t think so. But maybe the rush of chemicals released into our bloodstream when we’re in love have protective and anti-inflammatory effects (this is totally unscientific, please don’t quote me) and somehow help mitigate symptoms.

But that was a long time ago. That was before I was diagnosed. Continue reading

I Monday Need Tuesday A Wednesday Break Thursday From Friday Myself

saturation point. n. 1. Chemistry The point at which a substance will receive no more of another substance in solution. 2. The point at which no more can be absorbed or assimilated.

This is what MS does to me. It makes me reach my saturation point way sooner than I once did. The point at which fatigue evolves into pain because no matter how many hours I sleep they’re still not enough. The point at which I can’t stand hearing my friends talk because everything they say seems trivial and shallow compared to what’s going on in my mind. The point at which just the thought of typing a few words here drains me. Continue reading

Lonely

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~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.

 

Alone vs Lonely

Yesterday a friend of mine and I were talking on Facebook Messenger. We chatted a little and he said, “You seem fine.” I told him, “I’m not so sure,” and went on explaining my hermit mode, that’s been going on since early this year. 

And then, I read this article online and not only did it struck a huge chord but it also changed my mind. I felt myself nodding from beginning to end. I already have a book on loneliness in my shopping basket, but I thought I should add this one too. 

I told my friend that this time on my own has enabled me to listen to myself, gather my strengths (and I need them so very much), and figure out what’s been going on with me in terms of mental and physical health. I’ve been reading and writing a lot, making sense of things. I’ve also been more creative and I’m also invested in my education, with my post-grad course. How else would I be able to do this in the middle of the crowd? In the middle of the very very noisy, opinionated and vampire-like crowd? My hermit mode hasn’t been one of self-pity but of self-discovery, self-development and empowerment. I’m convinced I will be able, with the help of my therapists and the support of those closest to me, to change certain attitudes and behaviors. 

When I say I’m like a hermit, it doesn’t mean I’m going to grow a beard (that would be fun) and move many miles away from civilization (I would have to come back to go to dance performances, the movies and eat Thai food or sushi). But I know what it’s like to face the stigma. Like the friend mentioned in the article, I know what it’s like to be eyed with a mix of suspicion, curiosity and pity when I spend a few days away by myself and eat out at restaurants. Some men see a young woman by herself and think they’re easy prey (they’re not, and they most likely wish to remain lost in their own thoughts).

But I’m not going to spend my free time stuck at home just because I don’t have a boyfriend or my holidays didn’t overlap with any of my friends’. Hell no. There’s too much I want to see and visit and learn before disease eats me away. Stigma is in the eye of the beholder. My alone time is productive, rich and peaceful, and I won’t doubt myself and apologize for it. Not anymore.

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

Good old resentment or why I’ve been feeling so aggressive lately

118Resentment is like taking poison and expecting the other person to die, so says the quote that has been attributed to several different authors. And it’s true. Resentment holds you in its grip, doesn’t let go, and slowly eats you up inside. If you think of an autoimmune disease like ms, in which the immune system eats away at the myelin sheath, it becomes quite literal. Dr Gabor Maté writes on his When The Body Says No that if you can choose between guilt and resentment, choose guilt every time. I’ve been trying to adopt that strategy but every once in a while resentment surfaces before I even have time to notice what’s going on.

I’ve always been very independent and autonomous. That’s a personality trait of which I am, for most of the time, very proud. But because of that people don’t usually see me as someone who may need help, who may need to be cared for. And there were moments in my life when I certainly wish things hadn’t been so lonely, despite the fact that I could take care of everything on my own. So when someone in her thirties asks me to purchase something online for her because she doesn’t even know how to use a credit card on a website (you just put in the numbers, stupid), I feel like screaming. Scream because I don’t understand how someone doesn’t even try to do something incredibly simple for herself before asking for help, scream because I don’t understand how someone can get by exclusively through manipulating people into doing things for them – and, yes, scream because I rarely remember having people offering to help, even in much complicated situations (aww, look at all the resentment right there). Damn. I don’t remember who told me or where I read that ms was a blessing in the sense that I now have a perfectly valuable reason to say no to people and don’t let them take advantage of me. “My brain is all foggy today, I don’t remember how to do it, but I’m sure you can manage, little princess.”

The other day I had dinner with a friend. I was reading a book while waiting for him and when he arrived he asked me what I was reading. I told him it was about anxiety and depression in the context of ms (I will write about the book soon) and also mentioned some curious things I’d learned from it. He then proceeded to make fun of the book (“what a light summer read”) and changed the subject as I tried to tell him how relevant it was for me. Now I know some people use scorn as a means to disguise the fact they don’t know much about a given subject. Oldest trick in the book. And they even go as far as to say that it’s not important (if they never heard of it, of course it’s not, because the world obviously revolves around them). Some people even feel threatened by the idea that other people may know more than them, especially, god forbid, if that person is a woman and they’re men. But news flash! It’s my health, you moron, of course I know more about it than you! Why not ask some questions about why it is important for me and engage in a dialogue that can actually add meaning to both our lives? Wishful thinking. I can’t believe someone who’s known me for 15 years doesn’t let me connect and chooses instead to push me away with scorn. I can’t believe I’ve become alien to even those who have known me longer.

Seriously, I’ve cut off people from my life because of their absolute disregard for my health. On and on again I used to tell a friend of mine that no, I didn’t want to have dinner during the week, because that would make going to work the next day extra hard for me. Besides I had classes on Tuesdays and Thursdays and I wanted my mind to be clear and sharp, which wouldn’t happen if I’d slept less hours the night before. And no, Fridays I’m usually so tired I just crash. He couldn’t make arrangements on weekends so he kept pushing me to make an exception. But no. One day I just told him I was really busy and that I would call him when I had the time. I never called. It was it. I just wish I didn’t consider, time and again, to do the same with other people.

Maybe I’m overreacting and I will laugh about this soon. Maybe I just wrote the last sentence because I’m second-guessing myself and not having any consideration for my own feelings. Maybe I became overly sensitive since the diagnosis. I wish there was an instructions manual but there isn’t. Right now I’m just angry and lonely and scared. But mostly angry.

Lonely and self-restrained

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I’ve been aching for skin for some time now. It’s in my dreams, my daydreams, everywhere I look. It’s a kind of tepid pain, a longing, a long-distance call to a promise of a fleeting touch.

I’ve suddenly noticed though that I haven’t been paying much attention to myself lately. I’m not fit. I can’t get undressed. I’m not focused. I’m too all over the place, trying to be healthy without having a single clue of what that is, arm-wrestling with whatever that idea — ideal — means to the world and to me. I’m missing too many pieces to be good enough — impressive enough — at anything. And I don’t just want to be good enough at something. I want to be whole- some. I want to be perfect ‘cause in my mind that’s the only way I’m worthy of getting my hands on that skin — on any skin.