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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.

I’m self-destructive therefore autoimmune

545119_3656268165275_2141072253_nWhen I was diagnosed with multiple sclerosis, my neurologist explained to me in broad terms what happened in the brain of people with this condition. I realized it was an autoimmune disease, to which she said yes, it could be considered an autoimmune disease. I sobbed a little more (I sobbed the whole time) and asked her “So this is another way I found to hurt myself?” She told me not to think about it that way but looking back it makes perfect sense that I have an autoimmune disease (two, if you count with endometriosis). I never tolerated myself much, always brought myself down, and due to specific circumstances in my upbringing I never had much emotional independence, sense of self, or psychological boundaries. So no wonder my body was confused and shooting whatever seemed like a nice thing to shoot.

Autoimmunity fascinates me from every perspective. From a biological point of view, it’s not very smart, is it? It’s just pure self-destruction. From a psychological point of view, can our body really reflect a poor sense of self? Or is there more to it that we don’t even dream of? It remains a mystery, one that scientists are still trying to find answers to. And the list of autoimmune diseases keeps growing, as evidence suggests well-known diseases such as schizophrenia may have an autoimmune pathogenesis. Wikipedia lists many of these with links to scientific articles. It’s worth taking a look.

It is also worth taking a look at how other authors see autoimmunity. In Why Zebras Don’t Get Ulcers, Robert M. Sapolsky notes that both physical and psychological stressors seem to cause an early stage of immune activation. However, long-term/chronic stress begins to have the opposite effect, namely, suppressing immunity. But why can’t we not just let our system remain at the enhanced, improved level achieved with temporary stressors and “get the benefits of an activated immune system all the time? Metaphorically, why not have your military that defends you always on maximal alert? For one thing, it costs too much,” he explains. “And, even more important, a system that’s always on maximal, hair-trigger alert is more likely to get carried away at some point and shoot one of your own guys in a friendly fire accident. And that’s what can happen with immune systems that are chronically activated – they begin to mistake part of you for being something invasive, and you’ve got yourself an autoimmune disease.”

Doctor Gabor Maté also links autoimmunity with chronic stress, but he goes further along the way explaining that chronic stress most of the times originates from relationship patterns established during childhood. In When The Body Says No he writes that “The blurring of psychological boundaries during childhood becomes a significant source of future physiological stress in the adult.” He notes that “Within the individual organism, physical mutiny results from an immunologic confusion that perfectly mirrors the unconscious psychological confusion of self and non-self” and adds that “Cancer and ALS and MS and rheumatoid arthritis and all these other conditions, it seems to me, happen to people who have a poor sense of themselves as independent persons. On the emotional level, that is – they can be highly accomplished in the arts or intellectually – but on an emotional level they have a poorly differentiated sense of self. They live in reaction to others without ever really sensing who they themselves are.”

This unfortunately makes perfect sense to me considering my personal history. I’m not sure how it applies to the millions of people diagnosed with these diseases but I think it adds a valuable ingredient to the genetic and environmental factors we know about. You see, I always wondered why my sister had mono when I was 8 and I didn’t catch it then, even though I would steal her lipsticks and drink from the same cups. I caught it when I was 18. And why when exposed to the same flu virus some people are bed-ridden and other just have mild symptoms? The virus is the same, right? So there’s got to be something in our immune systems, which in turn are highly influenced by our emotions, that determines whether we’re going to get sick or not.

There is a famous story about Louis Pasteur that illustrates this view. Claude Bernard, his contemporary, thought that germs would only cause harm to the body if it presented the right conditions for them to thrive. He emphasized that it was more important to keep the organism “clean” and in balance than to attack the germs. Pasteur didn’t agree. He thought germs and microbes were the only reason people got sick. However, later in his life he came to change his mind. He’s quoted as saying on his deathbed, “Bernard avait raison. Le germe n’est rien, c’est le terrain qui est tout.” (“Bernard was right. The microbe is nothing, the soil is everything.”)

Why Zebras Don’t Get Ulcers

downloadIt’s true, zebras don’t get ulcers. For one thing, they don’t worry about things that are probably not even going to happen. Ever. Humans are the only ones who have that ability, and very often when we worry our body turns on a stress response, flooding it with a number of stress hormones that will promote a series of changes in our organs and our natural balance – heart rate goes up, immune system is suppressed, blood is diverted to muscles or wherever is most needed… Basically we have evolved to turn on a fight-or-flight response like zebras and other animals, however, unlike zebras and other animals, we don’t turn it off as easily – and that’s because most of the time we don’t react to threats, but to perceived  threats.

This is one of the basis to chronic stress. And we know that chronic stress can damage our body in many ways. It doesn’t necessarily means chronic stress is the cause to several diseases. It means that chronic stress, by permanently altering the body’s homeostasis, creates an environment in which it becomes impossible for the body to fight other factors, such as genetic predispositions or environmental risks. This is true for autoimmune diseases but also for heart conditions, ulcers, depression and many more.

Why Zebras Don’t Get Ulcers is the bible of stress. It’s not a book about a specific disease, it it rather a book about how stress can pave the way to many diseases. Each chapter focuses on a different system: cardiovascular, respiratory, endocrine, digestive, immune, reproductive… It also includes chapters on sleep, pain, memory, depression and anxiety, and addictions. And it doesn’t leave you with that. It includes insights on stress management, coping styles and how personality and temperament come into play.

The book is rather long and at certain points can become a little technical, but it is also filled with humor, relevant research and even the author’s personal experiences. If you needed further proof that you need to work on all that stress that invades your life uninvited, then this is the book to turn to.

Visit the Amazon link for more info:
http://amzn.to/1n3mknh

 

MS: The Facts

31fibAITxuL._BO2,204,203,200_PIsitb-sticker-arrow-click,TopRight,35,-76_AA300_SH20_OU01_When I was diagnosed with multiple sclerosis I felt the need to have a little guide that would sit on my shelf and I could pick up whenever I had doubts about anything or wanted to clarify a specific aspect of the disease. So I found this little book that has served this purpose since I purchased it.

It was released in late September 2012, which means that its information is still relatively up to date (though I expect – and hope – that with more therapies and scientific discoveries emerging it will become outdated it coming years). It’s only 84 pages long so it doesn’t deal with all the subjects with a lot of detail or depth but it gives a very significant overview, in a very accessible language, of everything you may want to look up.

Covered topics include possible causes for ms, the inflammatory process, symptoms, disease progression, diagnosis, social aspects of living with ms, how the immune system works, autoimmunity, treatments available and in development and alternative therapies. It basically covers all relevant topics for people interested in understanding what’s going on and how to manage it all.

One thing that struck me while reading the book was that the authors argue that the immune system of people with ms is normal, contrary to what is usually believed. They point out that brain tissue of people with ms reveals the presence of mild abnormalities and disturbances, and those abnormalities are the ones that call on the immune system cells to attack. This puts the drugs we take in perspective, since they seem to be targeted at the consequence, not the cause. But whatever the causes, I think this book is essential to have a little more understanding of what’s physiologically going on in our bodies.