Inspiration

2015 hasn’t really kicked off the best way, with me catching a cold that put everything I have to do this month on hold, and then stressing and freaking out because time is running out. But since I don’t want my blog to turn into a wailing wall, I thought I’d share some videos that have inspired me lately. Continue reading

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First 2015 reading list

The Wandering MindĀ – I’ve been talking about dissociation but I never really researched much about it. This is a little introductory book, from daydreaming to severe disorders. I’ll see if it’s worth it. Continue reading

The chicken and the egg

So, which came first? Depression or fatigue? Am I depressed because I’m always tired due to MS and can’t realize my potential, or am I tired because it is one of the symptoms of depression?

I barely remember what it’s like to not be tired. When I was 18 I had glandular fever for two weeks. The blood tests came back positive for the Epstein-Barr virus (which is suspected to be connected with MS) and for at least six months after the fever my antibody count remained high. That was the first time I experienced severe fatigue. I lost a lot of weight. I did recover, but I remember telling a friend a year or two later that I had never felt the same after that, like the fatigue mono brought with it had never left me.

On the other hand I thought fatigue was normal because I suffered from insomnia. I remember when I was 15, roughly a year after I experienced being depressed for the first time, waking up in the middle of the night and not being able to fall back to sleep. This pattern remains the same to date. If I wake up, either due to a nightmare, noise, light or even for no apparent reason, unless I’m medicated, I probably won’t sleep. This began at 15 and only at 28, after years of trying everything you can possibly imagine, I went to see a psychiatrist and started taking meds.

With those meds my sleep became sound. But around six months later I noticed that, even sleeping like a baby, I would still wake up tired. That was the first time it occurred to me that something could be really wrong. But I didn’t have to dwell on that thought for long because months later I was diagnosed with MS and told fatigue is one of the main symptoms of this condition.

So I’m confused. Depression can cause insomnia and fatigue. Insomnia obviously causes fatigue. MS causes fatigue. And fatigue, in turn, can cause depression. MS drugs can also cause depression. Antidepressants can leave you groggy and with no energy. All these intertwine. And as much as I try to trace back bits and pieces of my life in search for clues, memories fade – and are not so reliable.

I stopped taking fluoxetine this weekend and I immediately noticed a difference in my sleep, as it is lighter. But today I started taking my first prescribed drug for fatigue, amantadine. My MS specialist prescribed it a couple of years ago but I never tried it because I was taking so many meds at the time I worried about possible interactions. I hope I will be able in a few weeks time to tell what it feels like to not treat depression and treat fatigue instead. Will there be any difference?

In the meantime I will be spending January tying loose ends from 2014, including college (only a month to finish my final paper!) and the switch from Copaxone to Tysabri (how hard can it be? Apparently very hard for the NHS).

I wish you all a very good year, with good health on top of all. šŸ™‚

Christmas with you

This is a little appreciation post I’ve been meaning to write for some time but haven’t quite managed.

I wrote my first blog post here in March and back then I didn’t imagine that such amazing people with such meaningful experiences were going to read me. Least of all that around six months later I would be nominated for awards. I was nominated for the One Lovely Blog Award by Life in Slow MotionĀ and by A Body of Hope, and for the Liebster Award by Love My Life AnywayĀ and by Invisible Pain Warriors.

I didn’t accept any of the nominations for two reasons. One is that I had a relapse in September and my life turned upside down, with bad news, MRIs, blood tests, changes in medication, struggling not to drop out of college, and finally feeling a new round of depression knocking on the door from the end of October until now. The other reason is I love so many different blogs that I can’t pick them all. You see, I’m a Libra, making decisions is hard for me. šŸ˜‰Ā And mentioning some blogs whileĀ leaving the others just didn’t seem fair.

When this journey began, I envisioned this blog as a source of information on everything I’ve been researching since my MS, endo and PTSD diagnoses. It actually took on a totally different shape. It became more personal. An outlet for questions, doubts, reflections and occasional angry rants. I sometimes wondered how to grow my number of followers and I wrote a couple of posts with “10 tips” and how-to topics because they seem so popular. They’re still in the drafts folder as I never published them. They’re just not me. I figured if my writing were true to myself the right people would show up, like and comment.

They did, and became like a family to me. I needed that. A chronic illness diagnosis sets you apart from everyone else. It isolates you. With MS, because it manifests itself in such different ways from patient to patient, it even isolates you from other MS fighters who may never have experienced your symptoms. In the three years since I got the bad news, I realized some of my friends were really not good friends at all, so I chose to let go of them. And even with the friends I have that are absolutely wonderful, they just don’t know what it’s like. They listen, they try to comfort, but they have no idea.

So that leaves me with how important the interactions with you are for me. And you know who you are. You are the ones who read me and get me, no matter how flawed and lost I may be. You are the ones I read religiously, I care about and worry about when you’re too quiet. You probably have no idea how the kind words you left me felt so supportive many times. I sometimes wish I had more spoons to leave you more comments like that, but in the end of a busy day my mind is often unable to complete a sentence in English that will make sense to you.

Christmas is hard for me because my family is the definition of dysfunctional. And New Year is also hard for me because it makes you look back, look ahead – and I can’t help but feel overwhelmed and hopeless. But I guess I can take them as chances to stop and thank you for your generosity, for giving so much of you and adding meaning to my life.

Happy winter solstice (summer for those in the Southern Hemisphere) and happy holidays. šŸ™‚

Guinea pigs have feelings too

One thing psychiatry and neurology have in common is that patients get medicated by trial and error. I was diagnosed with MS three years ago and I’m about to try my third treatment (I’m hardcore like that). And since I stepped into a psychiatrist’s office for the first time four years ago, I have tried many different drugs, some more effective than others.

Doctors look at you, listen to your symptoms, look at your tests, and still have no way to predict if a given treatment is going to work for you or not. That leaves patients sometimes feeling like guinea pigs. And oh well, guinea pigs get tired of trying too. This particular guinea pig suffers from chronic fatigue that is physical, mental and emotional. Every day this guinea pig goes home feeling like it just completed the Olympics. And after all these years exhaustion is getting the better of it.

I calledĀ my psychiatrist earlier this week because fluoxetine is making me feel even worse than I was, and she decided to switch me to paroxetine. Reading about it online, it seemed to me more of the same. So is it even worth trying?

I wondered – what would happen if I just stopped?

And do I really want to know?Ā 

I’m currently discontinuing fluoxetine according to my psychiatrist’s treatment plan, but I haven’t picked up paroxetine yet and I’m not sure I will. I’llĀ see how thisĀ goes.

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 goĀ 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 titledĀ 50 Sufferers Describe Depression For People Who’ve Never Been Depressed,Ā 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.

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 thatĀ 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 beĀ filling my new job positionĀ 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.

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 IĀ neededĀ 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

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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.Ā 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.