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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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.

More medication changes?

I saw my psychiatrist today and I obviously had to update her on the latest developments about my health. So from there we started talking about what this all means in terms of my mood and sleep. I haven’t been sleeping well since those steroid infusions, but I’m confident my sleep will be back to usual patterns as soon as the steroids wear off, which, according to my neurologist (and my weird nights) hasn’t happened yet. So for now I’m going to keep taking trazodone at night.

Now for my morning pill. I’ve been taking escitalopram for some time and I’m quite happy with it. In fact, about a year ago, when I felt better and more stable and suggested my psychiatrist should take me off of it and see what happens, what happened was I stopped sleeping again. Escitalopram, being an antidepressant designed to treat anxiety as well, has been doing wonders for my insomnia, which has a lot to do with anxiety.

However, I haven’t been feeling anxious lately. At all. Instead, I’ve been dealing with everything by hiding from the rest of the world, feeling demotivated and generally more sad. So she thinks it might be a good idea to try something more uplifting, as in fluoxetine. That is, Prozac. Oh dear. 😦

Instances health care professionals were less than professional – and less than caring

September 2012

Having struggled with anxiety all my life, in September of 2012 I started suffering from what seemed like mild panic attacks. I had been diagnosed with MS nine months before and found out that Avonex not only wasn’t doing anything to prevent disease progression but it was also messing up my liver and thyroid. Plus, due to bureaucracies I had to wait before being able to move to another drug. My chest had begun to hurt, right where my heart is supposed to be, and when it hurt really bad I had trouble breathing. It even got to the point I wondered if I had heart problems. So I went to see my psychiatrist.

Now, I’m fairly open to taking suggestions and trying new things if that means there’s hope my symptoms will improve. But my psychiatrist just went: “I’m not going to prescribe you anything. You see, what you learn from a disease like MS is that you don’t really control anything in your life, so you shouldn’t worry so much.”

So I just spent 70 euros on “expert” advice that I could have heard from my mom, dad, boyfriend and closest friends… for free? Thanks, doc. What’s next? Telling me to smoke some weed?

I never saw him again. Found myself a new psychiatrist who listens and cares. She prescribed me Escitalopram and my chest never hurt again.

November 2012

My mother suggested I saw an acupuncturist so off I went. I kept telling him about my fatigue, blurred vision and trouble sleeping but he didn’t seem to listen because all he wanted to treat was my legs, despite the fact that I stressed I had never had mobility issues. But that wasn’t the worst. One day, as I was telling him about my symptoms and some of my fears, he said there were a lot more complicated situations out there, and went on talking about the work he did with children with cancer.

Dear Mr Acupuncturist,

I’m not a total moron and I’m perfectly aware there is a lot of misery and suffering out there, and things that just don’t make sense and are just not fair. But since I hired you to see if there was anything you could do for me, can you at least for these sixty minutes focus on me? Then we can both go on worrying about people who are suffering more than me. I can even buy a “suffering meter” to see who qualifies.

And as if this wasn’t enough, I noticed my mother somehow knew about things I had never told her but had mentioned to him. Have you ever heard of confidentiality, Mr Acupuncturist? Privacy, maybe? Trust? I can’t even…

April 2013

I went to see another neurologist to hear yet another opinion about all MS drugs available, their risks and benefits. As we were discussing second-line treatments, which heavily suppress many functions of your immune system, he said something as unbelievable as, “You needn’t worry about catching something like, let’s say, AIDS, ’cause you’re not gay.”

Dear universe, did I travel back in time and I’m in the 80s again? Am I speaking to a doctor or a religious fundamentalist? Should this person be practicing medicine? I’m puzzled.

September 2013

I found out I have endometriosis. My gynecologist said, “We’re gonna need to operate as soon as possible. I’m going to schedule all the pre-op exams.”

I wasn’t happy about undergoing surgery, so I went for a second opinion. Doctor said “I’m not going to operate a 30 year-old who’s never had children and who has another condition like MS without at least trying some medication first.”

Bless you, doctor. Medication is working, my cyst is almost invisible now and my ovaries are still intact. You’ll always be my gynecologist.

April 2014

I have a new primary care physician. I went to see her, tell her about my conditions and what generally life is like for me. That’s when she says, “A lot of people with MS are able to do pretty much everything in their lives, why can’t you?”

If ignorance were music, you’d be the national orchestra, doc.

Scared Sick – The Role of Childhood Trauma in Adult Disease

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I must confess I struggled to finish this book. It is filled with numbers and statistics that, while informative, do not account for the human side of each story and the countless variables that may contribute to the development of disease. It is also very gloomy – according to the authors, no matter what you do you will end up scarring your children for life. If like me you haven’t had children yet, you’ll be left with the feeling that you won’t be up to the task. And if like me you have one or more chronic illnesses, you’ll be told it’s all your mother’s fault. I know there were specific events in my life right after I was born that may have contributed to trauma and chronic stress and anxiety, which in turn may have turned my immune system against myself, but that’s likely just half the story. The way trauma, disease, abuse, attachment and relationships are depicted here is just bleak. There is not much room for successful interventions and outcomes.

The most interesting sections I found in this book was one on epigenetics, which led me to search for more on this topic (I purchase more books than I have time to read), and another one on EMDR. I did a session of EMDR at the beginning of the year and this was the first time I read about it in a book as one of the therapies for trauma. Still, this being the second of two books I purchased on PTSD, trauma and disease, I recommend the first one I read, The Body Remembers, as a much better option to understand the neurobiology of trauma and how trauma can be overcome.

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.

In the land of what if’s

It started Sunday night. As I was saying goodbye to my mother after our usual Sunday dinner at her place, she mentioned she’d read somewhere that 7 am was the best hour to wake up. Something to do with sleep cycles. I jokingly said something like, “Unless you’re living with multiple sclerosis,” and reminded her that I didn’t use to have any trouble getting up in the morning before, but for the past years I can’t seem to get up. Sometimes the alarm rings every 5 minutes for half an hour and I simply don’t hear it. And then my mother said, “Yes, you changed a lot, but don’t forget you’re also taking things to sleep and those make it harder for you to get up.” I replied I’ve only been taking meds since 2011 and that my troubles started earlier, but as I went home I started thinking “What if?” What if the meds are taking even more of my energy than MS already does? Last year I stopped taking one of them and what happened was that two months later I was insomniac again, waking up at 2, 3 and 4 in the morning unable to go back to sleep again. That means I’m not leaving them anytime soon, but it got me thinking.

And then my what if’s snowballed. What if my fatigue is not solely MS-related? Endometriosis is said to cause fatigue, as well as depression and stress and anxiety disorders. Could my fatigue be the sum of all these causes? (No wonder I’m tired.) And what about brain fog? I spent Monday and Tuesday with a bad case of brain fog. It got so bad that at a certain point I realized I didn’t know how to do my job anymore, the one I studied for and have been doing for the past ten years. You see, among other things, I translate for a living, and after staring for hours at two pages I needed to translate I suddenly found myself thinking that Google Translator is an excellent tool. (If my next post is about me being fired you know what happened.) What if the meds are also contributing to brain fog? Or what if brain fog is simply caused by my lack of motivation, that on the other hand makes me spend most of the days daydreaming of better things and dissociating as a means to escape my normal life?

And what if I made up all these what if’s because I’m still in denial and looking for clues that tell me that after all I don’t have MS (they could have switched my MRI’s in the hospital with someone else’s) or that it isn’t so bad?

Jesus.

My health defies any logic. The only two things that usually lift my brain fog are lying down and resting, or taking a walk, preferably next to trees or water. On Monday, as I was too tired to go for a walk, I lay in bed a little before dinner. It seemed to make it worse. On Tuesday, I didn’t rest and instead went shopping. That seemed to do the trick, as on Wednesday my mind was clear. So the brain fog is either motivation-related, or my MS didn’t like the fall/winter collection and went into hiding.

My behavior also seems to defy logic. Yesterday there was a family dinner, and I suddenly heard myself cutting everyone off mid-sentence to tell them it was getting late and I needed to go. I usually have to think and gather my strengths before being this assertive, but last night it just came out naturally. And I didn’t feel guilty about it. After all, both my father and stepmother are retired, and my sister is taking these last days of August off, so I was the only one who needed to get up early today to go to work.

Last but not least, my therapist thinks I’ve been too focused on my health (seriously? lol) and that maybe we need to work on other areas, such as my social support network. But I’m still on hermit mode, so I’m not sure how that is going to turn out. Will keep you posted. 🙂

Balance, limits, listening, pacing, speeding, braking and other confessions

About a month ago I wrote about learning to express my feelings, and then start working on expressing my needs. It makes a lot of sense, but I also pointed out to my therapist that before expressing my needs I needed to learn how to recognize them. Truth be told, I never paid myself much attention. I only tend to my needs when my body becomes unbearably uncomfortable. My therapist illustrated this to me with my relationship with food. Sometimes I only remember to eat when my stomach is hurting and low blood sugar is starting to make me freak out. She says I must remember to take care of myself before it ever gets to that point. I must listen to the signs my body sends me before I become sick. She acknowledged that I’m only acting out what I unconsciously learned during my early years, and that is that people will only tend to my needs after I get sick. But she also reminded me that I’m not a baby anymore, that I can tend to my own needs and I’m responsible for my well-being.

But old habits die hard. Having low self-esteem doesn’t help. Based on what I know happened during my childhood I probably “learned” that being invisible would be better for everyone. I had a dance teacher once telling me, “Sónia, you must stop apologizing for being.” Most of the time I go on pretending I don’t exist to myself. I don’t like looking in the mirror. I don’t take enough breaks at work, which is terrible for my neck, my back and for my brain fog. i just ignore myself. Life makes sense to me if I pay attention to other people’s needs first and let myself fall behind.

I don’t know if the fact that I feel like I’m a weird puzzle is a cause or a consequence of this. I’m almost 32 and I can say I never figured myself out. I’m spending these last days of my summer vacations with a friend and the other day I told her, “I don’t really know who I am.” I can be a lot of different people, put on such different masks depending on the context that sometimes I even surprise myself, like I’m an actress or like I’m watching myself from the outside. I have great strengths and great weaknesses and they all mean something different depending on what I’m going through at the moment. It’s… puzzling.

il_570xN.202356785Usually when I’m in a good mood I say just for fun that having been born in October I’m the most unbalanced Libra you’ll ever meet. As a child I could be very quiet playing by myself for hours, and I could also be very hyperactive, yelling and running around and making everyone around me really tired. This latter state I think was – and still is – fueled by a lot of anxiety, hyperarousal and hypervigilance as well.

Growing up, I kept feeling for most of the time completely restless. Part of that restlessness was what it’s now called in social media FOMO (Fear of Missing Out), as I had the feeling the world was turning and I wasn’t keeping up with it. The other part of it was the need to plan everything ever so carefully for fear of losing control. Even in my early 20’s when fatigue settled in, I kept on pushing myself, and pushing myself a little further, ‘cause if anything ran out of my control I would become terribly anxious and nervous – and if everyone else was living while I was merely surviving I would fall into depression and I didn’t want that.

Pedestrian_LED_Traffic_Light_NYCBeing diagnosed with multiple sclerosis at 29 became a double-edged sword. On the one hand, for the first time in my life, people convinced me – and I realized – that it was ok to rest. I finally started on a journey meant to teach me how to monitor myself. I’m still far from reaching the destination, but I definitely started listening to myself more, paying attention to my limits and to what my body was telling me in each different situation. I found out it was not only ok to rest, it was also ok to take breaks, to hit the brakes, to say no, to do nothing, to not be productive, to not prove myself to anyone, to just be. And I found myself enjoying it, my self-indulgence-I-have-the-right-to-be-healthy time.

pedestrianOn the other hand, I became even more restless, more hungry for new experiences. Whenever a challenge presents itself to me, even if a little dangerous, I think to myself, “I don’t know for how long I’m going to be able to do this, so here I go.” Or, “I don’t know for how long my legs are going to keep on working so let’s just do it, right?” 

On Monday, my friend and I decided to go see the caves that are nearby the place where we’re staying. Our guide was a former Boy Scout who grew up in the region. He was fairly at ease, going into the woods, climbing up the rocks and hills, going down the caves, showing us around, “This is where a Neaderthal’s tooth was found,” and all that. My friend also seemed pretty comfortable. Me? Let me just say that I don’t trust my balance that much. Even though for the last 10 years I was taught yoga, Pilates, several contemporary dance techniques and kept being told my balance was great, I’m really insecure about it. I was dreading I would fall down at any time and make a fool out of me. But I kept following them, panting as if I was an inveterate smoker. I must say at this point that not even my friend knows about my MS, and I didn’t think it was appropriate to stop them on their tracks and yell, “Wait, I have multiple sclerosis, please bear with me ‘cause I have balance issues and I also get really tired!” When we reached the entrance of one of the caves and I saw our guide take a rope out of his backpack because it was “easier to go down there holding on to a rope” my knees started shaking. No, they weren’t shaking because I have MS, they were shaking because I don’t trust myself. I’m glad I decided to go because the inside of the cave was pretty wondrous, but when I left I was kind of angry because I didn’t take any pictures. Well, I needed both hands free to hold on to the rope, which meant leaving everything I had with me outside, but does that count to my perfectionist self? No.

So on Tuesday, I left my friend reading and napping on the garden, I took the keys, my cell phone and my camera, and went back to the caves. I enjoy doing things by myself because people either speed me up and I get really tired, or slow me down and I get impatient. Going by myself means I get to keep my pace. Now, I’m not completely crazy and I didn’t go back to the most dangerous ones, especially because I had no equipment whatsoever with me. But I wandered. And I wondered if I’m ever going to find that middle ground between wearing myself out completely and letting life pass me by. And wondered what I keep trying to prove myself. But whatever it is, I will be taking pictures of it.

"You wanna see the caves? Sure, that way. Then all you have to do is climb and get a little lost."
“You wanna see the caves? Sure, that way. Then all you have to do is climb and get a little lost.”
"Like this. Keep going."
“Like this. Keep going.”
"Oh, come on, don't look back, you haven't climbed *that* high, keep going."
“Oh, come on, don’t look back, you haven’t climbed *that* high, keep going.”
"There you go."
“There you go.”
"See how the light looks splendid after you get out of a cave?"
“See how the light looks splendid after you get out of a cave?”

These lovely symptom-free days

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It’s that time of the year again. Vacations away from home, days of feeling normal: no anxiety, no fatigue, no lack of strength, no blurred vision. My ability to leave behind all worries and focus on relaxing is great. I wish I had that ability at home, but this is better than nothing.

I’m pretty much internet-less except for tiny moments here and there, so I won’t be able to read all of your posts and be up to date with your struggles and victories, but I hope you are all doing ok. 🙂

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Dear sleep, I missed you

The first night I remember waking up in the middle of the night and not being able to go back to sleep again I was 15. It’s likely my sleep issues started earlier, as I remember always being a very light sleeper, but that was the moment when sleepless nights became something like normal routine to me.

I tried everything I could remember, especially because I didn’t want to be medicated (I’m currently taking 6 different medications every day, so haha, the irony). Medication had side effects. I didn’t want to become a zombie. I didn’t want to admit defeat and ask for help. I thought I could outsmart myself and beat this devil in me that didn’t let me rest. I always had the notion that what was causing this was psychological rather than physical, so I thought I could somehow turn this around.

Then at the end of 2010, when I was 28, I went through a really rough period in my life and became severely depressed. I wasn’t neither eating nor sleeping at all. That’s when I saw a psychiatrist for the first time in my life. I started on an antidepressant (Agomelatin, which didn’t do much for me) and on small dose Cyamemazine for sleep. Cyamemazine is an antipsychotic drug and for some time I thought I was going psychotic much like other members of my family, but later my new psychiatrist explained Cyamemazine is also used to treat anxiety in other cases, so I took a deep breath.

Cyamemazine made me sleep deep and peacefully like a baby and those were happy sleeping times. Funny enough, after a while on it, it occurred to me for the first time that something could be seriously wrong with me. You see, I’d been feeling abnormally tired for years now, but I attributed it to suffering from insomnia. But now… I was sleeping safe and sound and still kept on feeling so awfully tired. Then at the end of 2011 I was diagnosed with multiple sclerosis and things started to make sense.

I had to change medication, because Cyamemazine, being a neuroleptic, can accelerate demyelination, which is not good news when you have ms. I couldn’t go back to not sleeping because not only studies suggest our body produces myelin during sleep but also because I couldn’t possibly handle the subsequent fatigue. I changed psychiatrists (my first one didn’t want me to stop Cyamemazine despite what my neurologists said) and I started taking Escitalopram at breakfast and Trazodone before going to bed.

I immediately felt a difference. On the one hand, Escitalopram really did its job with stabilizing my mood and my anxiety. My chest used to hurt due to anxiety to the point I thought I had some cardiac disorder, but as soon as I started taking Escitalopram I never had that again. On the other hand, Trazodone wasn’t as good as Cyamemazine in making me sleep. I noticed my sleep became lighter and I sometimes woke up a little earlier, though nothing compared to waking up at 2 or 3 in the morning. So as long as I was having 7 to 8 hours of sleep every night, even if it wasn’t such a deep one, I was still happy.

Then last summer my psychiatrist and I decided I was more at peace with my diagnosis and dealing with things much better so we tried to take Escitalopram from my cocktail and see what happened. A month off of it I started waking up half an hour before the alarm, then one hour before, then two hours before, and so 4 months later I went back to taking it. This really seems to confirm that my sleeping issues are all related to depression and anxiety and panic disorders.

Sleep became an issue again these past two weeks. I’ve been waking up before the alarm, sometimes 20 minutes earlier, sometimes one hour and half earlier and anything in between. This isn’t something that bothers me much if it happens occasionally, but these past two weeks it happened every day. My fatigue worsened a lot and my mood became somber. And why have I been waking up? Well, there’s a simple answer for that: nightmares. I wake up after a nightmare (or several, it depends) and I can’t sleep again. Sometimes I consciously decide not going back to sleep, because I don’t want to keep having nightmares and become so agitated.

What do I dream about? It varies. Sometimes my nightmares wouldn’t be considered nightmares by most people. They’re just uncomfortable dreams, but those uncomfortable situations I dream about connect with very deep insecurities and fears I live with, thus resulting in my body setting off the alarms. I’m also very susceptible to everything I read or watch. Working in a publishing company mostly with children and young adult fiction, I read a lot of books that sometimes upset me. I remember having several nightmares after reading The Hunger Games, and when I read Pure I dreamed I was spying on my ex-boyfriend through a camera inside someone else’s head, much like happens with the main character. Needless to say, I didn’t like what I saw in the dream.

And then, like today, I break down. I woke up early as usual, had breakfast, and as I was feeling really dizzy and numb, decided to pick up my e-reader and do a little reading in bed. I don’t think I read a single page – I fell asleep and only woke up at 1.30 pm because I have my alarm set to that time in order to remember to take one of my many medications. I was so so so tired. I don’t even remember the last time I woke after noon, probably back in 2011 during my Cyamemazine days. I’m feeling better, but I wish my sleep would be normal enough so my body wouldn’t have to occasionally shut down like that.