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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Letting our emotions speak

I went to see the movie Inside Out today. It’s entertaining, fun and light – nothing too deep here, or even 100% accurate, but let’s not forget it’s a movie and not a scientific paper. More importantly – and not wanting to give away too much here – the movie is also a reminder that all our emotions play an important role in shaping who we are and keeping us safe from danger. Often we want to shut out the most unpleasant ones – sadness, fear, anger – but they are needed, and nothing else would exist without them. Continue reading

Work vs Chronic illness

There’s something wrong with this title. There shouldn’t be a “vs” there. It shouldn’t be a war. But most of the times it is.

Unlike many people I know who suffer from chronic illnesses, I still work full time. And I don’t complain about that. I wish I will be able to work full time for many many years. I wish to have a life that feels as normal as possible. Then why do I feel like quitting so often? Continue reading

Inspiration

2015 hasn’t really kicked off the best way, with me catching a cold that put everything I have to do this month on hold, and then stressing and freaking out because time is running out. But since I don’t want my blog to turn into a wailing wall, I thought I’d share some videos that have inspired me lately. 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.

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. 🙂

Trauma: who is really at the door?

Yesterday my summer vacations started. I’ll be at home until tomorrow, because there are things I need to organize and take care of. On Saturday I will leave to spend some days at the beach and then some more days in the countryside, and I’m looking forward to it.

But yesterday something really uncomfortable happened to me that I wish hadn’t disturbed my first day off from work. One of my neighbors is an old man in his 80s who used to be a policeman. He minds everyone’s business and spends his days checking who enters and leaves the building. Despite the fact that he claims he can’t see or hear very well due to his age, he knows everything that’s going on. He also walks around checking on the things the building might need, such as a new light bulb, to report to the person in charge, which this year happens to be me.

So he probably saw my car parked during the morning, concluded I was home and decided it would be a great idea to knock at lunch time. Except he doesn’t really knock once or twice and wait like normal people do. He insistently presses the doorbell and knocks on the door with his cane really hard, like the building is on fire in the middle of night and everyone needs to wake up and leave.

I was peacefully finishing lunch while looking at some college stuff I need to take with me when I go away and I suddenly froze when I heard this. The first thing that came to my mind was something that happened when I was about 9 years old. My mother was dating at the time a really charming and intelligent man who had a terrible flaw: he drank, and when he did he became violent. So one night he came pounding on our door so drunk we couldn’t even make out what he was saying. I remember my mother telling my sister and I to hide in the closet, while she picked up a knife and desperately tried to call my uncle to come help us.

Yesterday I was 9 again, frozen, heart racing. I couldn’t react like a normal adult. Though I rationally knew what was going on with me, my body reacted automatically perceiving danger where there was none, because my body learned really early that someone at the door like that meant bad news, so it turned on a stress response I couldn’t control. After this went on for some time and the old man was still at the door, I managed to gather a thought: I thought I should call the police. And then I realized how ridiculous that thought was. I basically managed to tell myself I’m not 9 anymore but I still perceived myself as in danger. And this unfortunately sums up much of my behavior in life in general. I’m hypervigilant and have always had so much trouble sleeping all my life because I never feel completely safe. This chronic stress messed up my immune system and resulted in autoimmune diseases. And what’s missing from therapy is that I know all the roots to my problems but I haven’t yet managed to change my reactions and behavior patterns. I need to take that leap. Or I’ll just keep getting sicker and sicker.

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…

 

Good news, bad news and some existential thoughts (or not)

So… it’s been a little while. I went away for a week on vacation and when I came back it’s like all hell broke loose, more or less.
The good news is that the ultrasound revealed that my cyst keeps getting smaller as a result of the medication I’m taking. The doctor also examined me and he said he couldn’t even feel it anymore. The pain I sometimes get in my lower abdomen is apparently not related to my endometriosis, so it still remains to be diagnosed, but overall good news.
The bad news… After a week completely free of ms symptoms, as soon as I got back I started feeling intense fatigue again. I woke up on Monday and my right arm was numb and I was so tired my legs hurt and felt heavy, as if I had cement blocks attached to them. Throughout the day I noticed my left hand was always stiff.
These symptoms eventually subsided as the week went on, except for the fatigue and the feeling my legs were heavy. I kept spreading peppermint gel on them to make it better and it helped a little.
Now what am I to make of this? We know that stress exacerbates ms symptoms, but I think it goes a little beyond that. How we feel psychologically also messes us physically. Because the truth is I feel stranded in my everyday life, being kept in an office/cage from 9 to 5, being given responsibilities I don’t have the skills to deal with and wasn’t taught how to. And in the end of the week, life seems to make little sense. I don’t see ways out, I don’t see any meaning. I look for meanings and fulfillment in other places, but by the time I get home from work I’m usually so tired I can’t even write a few words on Twitter, let alone do anything else.
The other day I was on a Facebook group for people with ms and someone was telling she got her disability retirement at 31, which is how old I am now. Besides the fact that I don’t think anyone would give me retirement just because I feel tired all the time, it doesn’t even cross my mind throwing in the towel at such a young age. I don’t think I should give up because I don’t even think the problem is the disease itself but the external factors that are contributing to it. If I were given more flexibility in terms of working hours and the opportunity to work from home I believe my symptoms would generally improve. But unfortunately the company where I work is still operating in the past century, and given the economic crisis my country is struggling with, the prospects of finding another job look dim. I should be glad that I have a job and that my medication is still made available, though I know in other countries there are already new and more sophisticated options. So in the meantime I’ll just keep on dragging those cement blocks and hope everything will be fine.