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.

Triggers, genes vs environment, and haunting thoughts on childhood

Last night a conversation started on Twitter about the triggers of multiple sclerosis and the question if an unhappy and stressful childhood could have messed up the immune system. I mentioned I lived my childhood with chronic stress and that has been proved to influence the immune system. When I woke up today a lot of people had stepped in with different opinions. Some of them acknowledged they had difficult family backgrounds, someone noted that while having had an unhappy childhood their brothers and sisters were fine, someone blamed it on a bacterial infection and some people mentioned genes were the only factor involved.

I believe that somehow all these are connected. Genes play a part. They carry the information that determines which conditions you’re more likely to develop. They’re probably the reason some people develop multiple sclerosis, while others develop rheumatoid arthritis, ALS, etc. However, they can’t be the only reason. And now I’m going to quote Robert M. Sapolsky on this article because he explains it a lot better than I do. Robert M. Sapolsky wrote one of my favorite books on stress, Why Zebras Don’t Get Ulcers, and here he discusses the role of genes:

Each of our 20,000 or so genes specifies the construction of a specific protein; proteins shape the structure and function of cells, the communication between them, and their collectivity as organisms. Scientists once thought that, starting at the beginning of a chromosome, there’d be a stretch of DNA coding for gene A, which directed the construction of protein A. Immediately after that would be the DNA coding for gene B, specifying for protein B, followed by gene C, and so on.

But this turned out to be wrong. Between the stretches of DNA coding for two genes came a stretch of ‘non-coding’ DNA, once pejoratively called ‘junk DNA’, of no obvious use. Then came the astonishing discovery that approximately 95 per cent of DNA is non-coding. It can’t be that nearly all of DNA is junk; instead, much of that 95 per cent is the instruction manual for using genes. More specifically, these ‘regulatory elements’ are the on-off switches determining when and how much a particular gene is transcribed (ie, prodded into instigating the construction of its protein). Just before the start of the DNA coding for a gene is a stretch of regulatory DNA constituting that gene’s ‘promoter’. If a particular ‘transcription factor’ comes floating over from somewhere in the cell and binds to that promoter, this triggers transcription of that gene.

So what could trigger these “transcription factors”? The answer is the environment. And environment can mean a lot of different things. That’s when lifestyle, infections, stress, emotions, etc., come in. In other words, you can have the genes that predispose you to develop multiple sclerosis, but without the right triggers you have a chance of never developing it. If it wasn’t the case, twins would suffer from the same conditions, and we know that’s not always true.

Drifting a little away from the genes topic, but still reflecting on the Twitter conversation, I started wondering about some things. While I don’t consider I had an unhappy childhood, I do know I come from a dysfunctional background. My parents divorced when I was 2 and my father didn’t care much and was always very absent. My mother was always too busy dealing with way too much she could handle on her own and didn’t pay much attention either. Except when I was sick. I remember when I was in hospital at 5 my father came to visit every day and brought me presents. My mother had to stop everything and take care of me whenever I had asthma attacks. So I wonder if I unconsciously learned in my childhood that being ill was the only way for people to pay attention to me and care for me…

 

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.