I have a lot of drafts written here but I never finished them because lately I’ve been busy, tired and worried about many things. One of the drafts was about my daydreaming and how disappointed, sad and – yes – tired I feel when reality doesn’t comply with the preferable versions of my life I have in my head. Both my therapists say that it’s ok, and even healthy, that my mind can take a few breaks every once in a while, but me – I just know that every disappointment is like I’ve been hit by a bomb and I’d rather avoid them.
One of those things I was daydreaming about was a new job. I applied to a couple of them and I was pretty confident I would at least be called for an interview. In my mind I made the whole film: me driving every day to a new location, meeting new people, working on exciting projects. But they never even called for an interview and there I was, feeling there is nowhere to run.
And then my boss called me at work and asked if I would like to run my department. The department I work for is run by another department and there never has been a head or coordinator. I’d be the first one. For years I’ve been asking the gods for a more dynamic and communicative job, one in which I can get up more and talk to more people. My days are pretty much spent just reading and writing, and that’s put a lot of strain on my eyes, which as we know are not exactly in good shape. This would be the chance.
However, I’m also pretty aware of those things I’m not so good at, and one of them is dealing with difficult people. My colleagues in the department have worked for the company for many decades and they won’t take lightly the fact that a 32-year-old kid, the youngest there, is going to tell them what they are going to do and when. And sometimes I lose my temper pretty fast, especially when I’m really really really tired.
I gave it some thought but ultimately I realized that the benefits taken from developing new skills and having them on my resume greatly surpass the risks of me failing. Just like maybe I need to take risks regarding my medication for MS, despite not encouraging news of patients dying, maybe I need to start taking more risks in other of areas of my life. Shed the insecurities MS has given me and remind myself that things can go pretty rough very quickly so I might just grab what’s there for me. My healthy and oh-so-safe lifestyle hasn’t really shielded me from disease progression anyway – and it gets boring too. So at least for a while my life will be filled with new experiences.
12 years ago today, October 20th 2002, I woke up, went to the kitchen in my pajamas, Sunday morning, made breakfast, went to the living room while eating it, flipped the pages of a magazine, got up again, put the mug and plate in the kitchen sink – and then everything went black. I have a very faint recollection of feeling dizzy and nauseous but I don’t remember any more. I know I walked three or four steps because I was found on the floor by the kitchen door. On the wall there was a mark my fingers made possibly when I was trying to hold on to it not to fall. But I don’t remember. No one knows how much time I was out. My left knee and arm were bruised, and so was my head.
The story they told me was that my grandfather, who was living with us at the time, heard me crying and found me on the floor. He called my mother who was in the bathroom taking a shower and she realized I was in a disoriented, confusional state. My short term memory was gone. The last weeks of my life were gone. She called her therapist who told her to take me immediately to a hospital. She asked me my best friend’s number, which I gave her by heart, and called her to know if anything might have happened in my life that could have caused such a shock, such confusion, such dissociation. My best friend and her mother then joined us at the hospital.
At the hospital they gave me something to drink that I suppose was a sedative. It must have been strong because I remember drinking it and my tongue tingling. I was seen by a neurologist although I don’t remember talking to him. I remember getting up from the CT scan, putting my glasses on and seeing a really tall and really black doctor in the corridor looking in with concerned eyes. I didn’t know who he was but that image stuck with me. He made me feel safe somehow. Later on I asked my mother if she knew who he was and she told he was the neurologist who’d seen me and that he’d spent a long time talking to me. I don’t remember any of this, I just remember seeing him in the corridor and the look in his eyes.
While we were waiting for the results, I remember asking myself, completely puzzled, why I was wearing glasses if I never leave the house without my contacts, and why I wasn’t wearing a bra, another thing I just don’t go out without. I didn’t remember that just hours before my mother had dressed me to take me to the hospital and she wasn’t going to be bothered with bras and contacts. Similarly, I asked everyone what time it was. People told me it was 3. And I asked them “am or pm?” Then I wanted to know what day it was. They told me Sunday, October 20th. Bewildered, I remarked, “October 20th? Then my birthday was three days ago…” I saw everyone’s faces lit up. They thought I was going to remember. “Yes, sweetie, your birthday was on Thursday.” I searched inside my head but had to give up. I didn’t remember.
Finally the results showed no abnormalities so they shipped me to psychiatry. While I was waiting to be seen by a psychiatrist I saw my ex-boyfriend’s number written on my friend’s hand. She had asked me for the number and I had given it to her but again I didn’t remember. It was easy to think this could all be psychological. My ex-boyfriend and I had broke up two weeks before, I was hurt because he hadn’t even texted me on my birthday, and we had been together the day before so he could give me back some things I’d left at his place. This is why my friend wanted to call him so she could know if anything had happened the day before that could have led to something so drastic. But no. We had quite a peaceful meeting.
However that wasn’t the only reason I was sad. My mother and I weren’t speaking to each other then, and our family was going through a rough time with my grandfather being ill and living with us. Plus, my third year in college had just begun that week and I was feeling lost. I knew I didn’t want to be taking that degree but I didn’t know what I wanted to take. If I were to change, that was the occasion to do it because it was right in the middle of the four-year degree. But I didn’t know what to do, so I kept going. My English teacher had given me an assignment for Monday, which consisted in an analysis of a science fiction short story. In the story, the main character’s memories were stolen or lost, I don’t remember anymore, but I remember thinking, as I was working on it before meeting with my ex-boyfriend, something like “How nice it would be if I could just forget some of the things that happened in my life lately.” To this day, I’m really careful about what I wish for.
Then came Sunday. Despite not being in a good place in my life, I woke up feeling happy because I had plans to be with my best friend. I wasn’t going to be stuck at home feeling bored, lonely and sad. And then it all happened. At the hospital the psychiatrist gave me some sedatives for emergencies and told my mother I should seek therapy. I went home, ate dinner, went to bed, slept for twelve hours, and when I woke up I started putting together the memories that were slowly coming back. The next days I managed to remember everything except for much that happened on Sunday.
I still don’t know what happened. No one ever gave me a clear explanation. My family doctor afterward ordered a lot of tests to rule out possible physical causes. I repeated the CT scan, had and EEG, an echocardiogram, a Holter test and blood tests. Everything came back normal. The only test that was missing here was an MRI. I wonder what an MRI would have told had any doctor remembered to order one. Judging by the fatigue, it’s likely I already had MS. How many lesions, if any?
To this day, what happened 12 years ago is still the scariest moment of my life, scarier even that hearing a multiple sclerosis diagnosis. When you lose your memory you lose parts of your identity, you lose a sense of self, you lose reference points, you lose anchors to hold you, you lose cause/effect sequences that help you make sense of the world. Was it purely psychological? Was it plain dissociation? Was it a defense mechanism in a very stressful moment in my life? Is this what happens when I can’t handle the pressure even though I think I can?
The reason I’m remembering this is because I have been worried about me lately. I have been dissociating more and more. The other day I was driving, I got lost in my own thoughts, and suddenly I realized I didn’t know where I was going and I didn’t remember how I got there. I recognized where I was, but it wasn’t the place I wanted to drive to. It’s like I fell asleep but kept driving. Should I worry or this too shall pass?
The first time I heard about Open Focus I was told it was a little different from meditation. As I started reading though I realized it isn’t all that different, as I already tried some of the concepts during some meditation exercises.
Open Focus is basically a series of self-management exercises designed to train the way we pay attention. According to the author, much of our problems arise or are made worse by our style of attention, which is permanently in narrow-objective focus. Narrow-objective focus is the brain’s emergency mode and produces a lot of tension. Opening our focus and learning how to flexibly switch from one style of attention to the other according to the context will help dissolve physical and emotional pain, anxiety, depression as well as improve athletic and artistic performances.
Even though the premises (the author throws in research on brain waves and bio and neurofeedback) and exercises are interesting and compelling, I found the book itself repetitive. It could easily be cut by half its length without losing essential content. The exercises are a lot easier to follow with the audio provided on the website. However, I found the price of the mp3 way too high for the audio quality. Anyway, if you wish to learn more about it, you will find lots of resources on the website http://www.openfocus.com.
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. 😦
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.
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…
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.
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.
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.