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

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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

Homework

After my therapist and I did those sessions of reconnective healing, I asked her about EMDR. I did a session once, back in November 2013, with my previous therapist, and it was so interesting and intense that I always kept in my mind the idea that I could pursue this kind of therapy.

EMDR – Eye Movement Desensitization and Reprocessing – is a technique developed to help victims of trauma. It initially became very popular and successful with war veterans suffering from PTSD but it is being increasingly used to treat other forms of trauma – including emotional trauma – and even to soothe anxiety symptoms in people suffering from severe anxiety. Continue reading

Reconnection

I am one very skeptical young lady, and maybe that’s why I try everything I can – I hope I will find something I can finally stop being skeptical about. On the other hand, when people ask me “Have you tried…” I can say yes and not let them bother me anymore. I find most of the things I try can only produce momentary relief, and they mostly relieve symptoms, while letting causes pretty much untouched.

That doesn’t mean that I cease to practice them or use them – most of the days I’ll just be glad if I can successfully manage my symptoms, so it’s great. And it doesn’t mean that I will stop trying new things. So that’s what I did last month.

The first time I heard about reconnective healing my therapist had just gone through some sessions. She was exhilarated with the results. She said she’d felt one of her vertebrae move during one of the sessions. She said that afterward some things in her life started flowing like they were supposed to. Continue reading

Survival instinct kicks in

The first time I actually felt my survival instinct running in full mode was when I was diagnosed. While I was trying to keep my head above the water, get used to injections and side effects, and manage the overwhelming amount of info about multiple sclerosis I would have to become familiar with, I looked around me and everything seemed superficial, futile and vain. I knew I was being unfair, but people’s worries, problems and troubles irritated me. It all seemed pretty meaningless. I resented the fact that people were carefree enough to look for mindless entertainment. I was focusing all my energies in being well while everyone else was on Facebook talking about the latest random video or trend. Another funny thing that happened was that my creativity was gone for a while. I’m always full of ideas and there are constantly voices in my head playing parts in short stories that I sometimes like to write. Suddenly the voices were quiet. Imagination thrives in empty spaces, and there was no room inside my mind for anything other than MS and being fine.

Although at a much smaller scale, I’m getting hints of that feeling again. Right now I have to decide between a drug that might give me progressive multifocal leukoencephalopathy and another drug that might give me heart problems, knowing that both will shut down key functions of my immune system and thus I won’t be protected against infections and possibly tumors. At the same time people want me to engage in the usual office gossip of who’s backstabbing who, ask me if I’m counting the days until I see my infatuation again (who?) and expect me to remember about a concert or show I wanted to go to? I just feel like screaming.

Meanwhile, my mother has made clear that she isn’t happy about me taking any of those drugs. She didn’t need to tell me though, because two years ago we had the same discussion when I switched from Avonex to Copaxone. My mother has a cure for my multiple sclerosis: if I never leave my house again, only eat what she cooks and spend my time doing yoga, meditation and acupuncture, I won’t need anything else. She just forgets this isn’t very practical – or worth living for, for that matter.

So my survival instinct has been obsessively listing everything I’ve been doing for the past three years – and some of them for longer – to prove that I really can’t do more or better than I am already doing, and that this disease is simply unpredictable, random and not my fault. I have been:

  • Eating the best I can. I have a varied Mediterranean diet, that includes a lot of fruits, vegetables, soup, nuts, and fatty fish. I started drinking 2 liters of water a day. Though I didn’t eliminate them completely, I cut down on dairy, gluten and meat, as I found I have more energy if I don’t eat as much. I never had a sweet tooth so I never ate much refined sugar. I don’t have pre cooked meals at home. When I eat out, I look for the best options. Yes, I occasionally have a pizza, but I don’t think it’s one occasion here or there that’s going to kill me.
  • Exercising. The past ten years I did cardio fitness, yoga, pilates, contemporary dance and floor barre. This year, as I don’t have much time to enroll in activities due to having classes at night, I go running and I also do stretching exercises at home. They help me keep sane.
  • Meditating. Although I don’t meditate as often and as regularly as I would like to, I notice I’ve been able to improve some of my cognitive functions. I’ve also been sleeping and resting better.
  • Taking more breaks. This was something I didn’t use to do. I now take breaks during the workday, pick an evening every week to not do anything after work, say no more often and try to manage my vacation time in a more balanced way through the year.
  • Taking my vitamin D supplements. Doctor tells me to take them, so I do.
  • Seeing a psychiatrist regularly, and keeping my anxiety and depression as far away from me as possible with a little help from medication that prevents huge mood swings and insomnia.
  • Doing psychotherapy and cognitive-behavioral therapy. Yes, I see two different therapists, but the work they’re doing complements each other. I credit both of them for believing in me and not letting me lose my mind all these years when relationships, responsibilities, work, disappointments and health issues just seemed too much.
  • Looking for intellectual and social stimuli. Since my job keeps me in a bubble and doesn’t give me much room to grow, I have enrolled in courses and seminars that might interest me, meeting new and interesting people along the way.
  • Trying to learn how to manage stress. This isn’t something you learn overnight, but I’ve been consciously paying more attention to the signs my body sends me and trying to worry less, take things less personally and put them in perspective. And also not be too hard on myself when I forget about this and get caught up by stress once again. I will get there slowly.

So, mom, am I missing something?

~Am I running out of resources?

Or am I just trying too hard?~

La rentrée: official relapse and déjà vus

Bummer. So I had my first official relapse in less than three years after my diagnosis. I don’t really remember how this goal came up. I think I read or was told that the first three years after the diagnosis are crucial to understanding how fast the disease is going to progress. I was hoping that if I made it to that three-year anniversary I would have a good prognosis, but I feel like I failed. Of course statistics are just statistics, and in all honesty I don’t think my immune system keeps a calendar and counts the days. I’m the one doing this and adding meaning to something that may not have any meaning at all. What is wrong is not my MS (well, apart from everything that’s wrong with it) but my expectations, that were probably too high. Small goals, one day at a time. Keep it simple. I’ll be fine.

And I actually am. I went through this entire relapse in a very rational and collected fashion. My therapist told me that if I were always like this I wouldn’t need therapy anymore. When physical symptoms arise, sometimes mental symptoms like anxiety and dissociation move out of the way because the body needs to keep its cool in order to survive. But I actually have a simpler explanation. I was calm mostly because the whole thing was a déjà vu. It happened pretty much the same way it did in late 2011 when I was diagnosed. Let’s see:

  • Day one: woke up and my vision was weird, though it took me one day to figure out exactly how weird. 2011: right eye with blurred and double vision. 2014: a shadow on my right eye, pain when I move the eye very quickly.
  • Day two: the headaches begin. I was later explained the headaches are an indirect symptom. The brain realizes that there is something wrong with the data the optic nerves are sending, and thus corrects it. Doing so for all the hours we’re awake is literally a pain in the brain.
  • Day three: dizziness and vertigo. Probably an indirect symptom as well. 2011: it still took me more three days to go to the hospital and hear the verdict that I had a nerve paralyzed and that was causing the double vision. 2014: on the third day I just called my neurologist and heard the verdict: the dreaded optic neuritis. The good news: the nerves involved in both cases are different, so it’s likely that my previous lesion in not bigger and that this one is new. Either way, I still fear that in ten years time my vision will be seriously compromised. Let’s hope not. I casually asked my neurologist what would have happened if I hadn’t called and instead let the inflammation run its course. She told me that my vision could have worsened and the remission might not be total, leaving me with permanent damage. So 5 days of methylprednisolone was the best option to make sure everything went back to normal.

Now as for the déjà vus regarding the context in which these two exacerbations occurred:

  • Many people relapse while they’re going through a stressful time in their lives. Not me. I apparently relapse when everything’s fine and I’m feeling stable and quite content with things in my life. I read once that according to studies new lesions form in the brain and spinal cord around seven weeks after a stressful event. The explanation is that stress slows down the immune system. When everything goes back to normal, an overactive immune system like that of those with autoimmune conditions, comes back in full force and starts wreaking havoc. That makes more sense to me if I consider my experience. Back in 2011 the first six months of the year were of non-stop stress. Chronic stress. Then things started to get better and by November I was feeling happy. How weird. I almost had forgotten what happiness was like. And then, much like self-sabotage, it all went down the drain. This time around I spent the month of July struggling with fatigue and worrying about different stuff, and then I slowed down, went away, relaxed, exercised more, reflected on where I was and where I wanted to go next… I wasn’t exactly feeling my happiest me, but I was peaceful, my mind was not at war with anything. And here I am again.
  • On the other hand, while I was feeling relaxed and content, both in 2011 and now I decided to stop daydreaming so much and put my feet on the ground. After all, I live in reality, not in an alternate version my brain likes to idealize. I dream of running away, of getting away from everything that makes me feel stranded. I dream of a life with more freedom. But I also need to focus on the here and now so I might as well stop building castles in the air. Turns out, dissociating seems to be working as a safety blanket for me. Once I threw it out, reality hit me right in the face. Punched me literally in the eye.
  • Both in 2011 and now I had just started reading a book by Haruki Murakami when my vision decided to stop working properly. In 2011 it was 1Q84 and now Colorless Tsukuru Tazaki and His Years of Pilgrimage. This coincidence is almost as surreal as Murakami’s books. I’m actually thinking about writing to him asking him not to write another book for the next ten years, so I won’t relapse.
  • My mom was in utter denial. I’m considering using my mom’s reactions as an indicator of how bad the situation might be. In 2011 she told me I was just stressed (no, mom, I’m not, besides I never heard of stress causing double vision). Now she told me there were a lot of strange viruses out there and that I might have caught something (not when I’m having all these déjà vus, no).
  • As usual, it was my therapist who took my symptoms seriously and nudged me to see a doctor. In 2011 she was harder on me: “You’re going to get out of here and immediately go to the hospital.” This time she just told me, “I think you will find out for yourself soon that it’s best to hear your neurologist’s opinion.” I think I’m getting better at taking care of myself, but it’s still sad that I need someone to encourage me to do so.

Of course, comparing 2011 and 2014, there were some differences too. First let’s have a laugh:

The day before I went to see my neurologist and started on methylprednisolone I was told at my job that I was going to get a raise in recognition of my hard work. So what do I do the day after that? I call in sick. Ha! They are probably having second thoughts on that raise right now. The universe truly works in mysterious ways. (And I love my life.)

Also, this time around my moment of self-pity only lasted about thirty minutes. I let my eyes well up with tears (I actually didn’t let, I just couldn’t help it) while I engaged in some “this isn’t fair, I didn’t do anything wrong, I don’t deserve this disease, neither the amazing people I know with MS, this doesn’t make sense”, etc, etc, etc. But then I realized that, the same way I don’t think my immune system keeps a calendar, I don’t believe it holds a court either. Nor do I think I’m on trial. It just is what it is.

So right now I’m doing what the doctor told me and just resting in between IV treatments. The weather is cloudy here, so it’s good to watch movies, mostly animation, teen movies and comedies. I’m just not in the mood for deeper stuff. Of course being the very sensitive/emotional/hormonal/depressive young woman that I am, I cried in all of them, even the comedies. Yep, that’s me. Sometimes I feel fragile and defenseless like a newborn, but like a newborn I will be kicking and screaming for my life. As soon as I’m “normal” again, I will be back on my active lifestyle, hungry for life, knowledge, growth and experiences.

I will be putting up a fight.

The Body Remembers – The Psychophysiology of Trauma and Trauma Treatment

51Iz1JHskkL._SY344_BO1,204,203,200_When my therapist said most of my symptoms were consistent with PTSD, off I went on a shopping spree trying to understand everything I could about it. I ended up only purchasing two books (so much for the shopping spree) and chose to pick up this one first because one of the things my therapist keeps telling me is that trauma is always in the body. It is felt, processed, stored and remembered in the body.

This book didn’t disappoint in explaining how. The first part provides a useful introduction to the mechanisms underlying the experiences of trauma. Being the geek that I am when it comes to all things science-related, I enjoyed learning about the role of brain regions such as the amygdala and the hippocampus in processing information, stimuli, emotions, etc, in regulating the body’s response to them, and their connection to memory, learning and language. 

The second part is aimed at providing therapists and their clients with techniques to alleviate and treat trauma symptoms using body awareness. The idea that the body is an endless resource for healing is certainly one that appeals to me. I’ve been learning for the past years how to pay more attention to what my body is telling me through yoga, contemporary dance and meditation. Now I intend to follow some of the suggestions in this book as well. I actually had the opportunity to try them today when I woke up startled at 5.30 am due to a nightmare. I didn’t think I could go back to sleep, but I remembered some of the exercises in the book and managed to get some sleep before the alarm went off.

Overall I think this book helped me getting more acquainted with what PTSD is about. It offers a nice balance between psychology and neuroscience, theory and practice. I hope the next one on my reading list will provide me with as much insight.

Fickle memories and things I need to ask my therapist about

So my friend and I were having dinner and for some reason we started talking about weight. Weight has always been an issue for me, because I’ve always been thin and many people think it’s ok to taunt me about it. No one in my family is overweight, and we’re all those annoying people who eat everything and don’t put on extra pounds. We also tend to lose weight when we’re down or stressed out, unlike other people. Personally, I eat more when I’m anxious and stressed, but everything I eat is burned up by my nervous system.

Apparently though many people think I should conform to their vision of what I should look like, regardless of my genetics and the way my metabolism works. It doesn’t help that it is socially acceptable to come up to a thin person and say, “You’re so thin, did you enter a contest to disappear or something,” (I didn’t make this up, someone actually said it to me once), but if I remarked, “You’re so fat, did you enter a contest to become a whale or something,” then I would be a really mean person. The irony in all this is that I’m not really underweight according to the body mass calculators online. I’m just pear-shaped and people only tend to look at your upper half. 😀

Anyway, as my friend and I were talking, I remembered something rude a mutual friend had once said to me about my weight and mentioned that I was so upset that I didn’t have any reaction to the rude comment.

My friend said, “Oh but you did, I remember you answered in a very dry tone and in a very smart way. [Our mutual friend] was left speechless.”

And I said, “I don’t remember. I believe I froze. I was going through such a hard time at the time and was so sensitive to anything anyone would say to me that I just felt hurt, like I’d been punched breathless.” 

My friend smiled and said, “No, you didn’t freeze. Your voice became cold and you said something like, ‘If weight were easy to control there wouldn’t be an entire industry dedicated to it.’ I thought that was a very smart answer.”

I thought for a second and said, “That sounds like something I would say, yes.”

We proceeded to check if the rest of our memories matched. “Was it at that dinner party at our friend’s hostel?” “Was it in the summer?” “Were there our friends […]?” “Was it before dinner?” They did.

And as I kept thinking about it it slowly came back to me. But it brought up many questions. Why did I just keep in my memory that I felt deeply hurt and misunderstood? Why didn’t I remember that I actually managed to stand up for myself without being rude? Remembering that could have been a great resource in many situations afterwards. Knowing that I can defend myself could have boosted my self-confidence and made me trust myself more. Do I unconsciously want to play the victim? Do I unconsciously go on picking up clues that reinforce my ingrained belief that I’m not good enough and therefore I should feel sorry for myself?

I feel a little disturbed considering this. It’s definitely something I mustn’t forget to talk to my therapist about. 

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?

I wish I was (more) dysfunctional

From very early in my life I had many different problems. I started having asthma when I was 2 and a half and I never spent more than a week in daycare with other children. Every year my mother would enroll me but, even though I have no memories of those times, I suspect we both suffered from separation anxiety. I was shy and had a little social phobia. My mother overprotected me and didn’t equip me with the tools to go out into the world, so being away from home without anyone familiar brought me so much anxiety I would soon fall ill with something. When I turned 5 and it happened again, my mother started panicking. The next year I would have to start school no matter what (homeschooling is not really an option in my country). So after talking to my pediatrician, he gave her the number of a child therapist.

From the age of 5 to the age of 10 I went every week to see this therapist. I have very few memories of these sessions (which is weird considering they span for a period of 5 years) but when I try to look back the feeling is that I was generally happy there. And I did make some progress. I had no trouble at all when I started school at the age of 6, I made friends on my own, asthma went away around 7 or 8.

However, all these years later when I look at myself and my “collection” of illnesses I wonder what was it that therapy did to me. I think that all that it did was make me functional, while it did nothing about the underlying problems that had resulted in me being a very troubled child. For instance, I don’t let anxiety and fear stop me from doing things that I find challenging, but I still get anxious, and those anxiety symptoms have been taking a toll, eroding my entire system. Still, I’m the epitome of functional. No one knows I’m sick if I don’t tell them, I work full-time as a copy editor, I study at night, I exercise, I see my friends and family, I have a lot of interests, I keep my apartment as clean and tidy as possible, I manage insomnia, depression, endometriosis and multiple sclerosis as best as I can… I am so functional and apparently so normal that when I do complain about something no one really believes me. Sometimes not even doctors, which is probably the reason why I went for so many years without a proper diagnosis, proper medication and proper support.

But I’m also the epitome of troubled. My functionality has been disguising a lot of issues that date as far back as my early years and go on up until now. And the clues were all there. Coming from a family with a history of mental illnesses such as schizophrenia, bipolar disorder, addiction, and depression should have raised a few eyebrows. But no. They looked at me and saw this gentle harmless young woman who wouldn’t want to be any trouble. And me, I was too puzzled to even be able to make sense of things, too scared to trust people.

So today I wish I was a little more dysfunctional. Maybe people would have taken me seriously. Maybe this wouldn’t have been hurting for so long.