Liar, liar, such a big liar

I haven’t told my father and stepmother about my relapse and the upcoming change in medication. I know I will eventually have to sit down with them and tell them the news, but right now I don’t think I can handle their fears. My father would start calling me every day wanting to know how I am and I would pick up his anxiety and start feeling anxious too. I know, this has happened before. Besides, the fact that I’m still not well would start making me feel guilty, because everyone wants so bad that my vision is crystal clear and it’s like it’s my fault that it’s not.

So instead I’m feeling guilty for lying to them. Every time he calls and asks how I’m doing and if I need anything, I lie. I hate doing it. I never was one to lie because I always thought lying was too much trouble and a waste of mental space and energy. When you lie you have to remember the details of what you said so as to not be caught. Sometimes your lies get all tangled up. And being that my memory is not what it used to be, I always felt it was so much easier to tell the truth.

And then I was diagnosed with multiple sclerosis and lying became almost second nature. I don’t trust people enough to understand, so I lie. I don’t trust people enough to be empathetic, so I lie. I don’t trust people enough to be educated, so I lie. I don’t trust people enough to support me, so I lie.

I told one of my closest friends this time that I had the flu. The ones I told the truth I wish I hadn’t. One of them said to me – and I don’t know if he was being supportive and optimistic in his own way or just plain dismissive and ignorant – that if I was going to change medication that meant I was going to be fine. (I wish I will be but there’s no guarantee. Hell, there’s not even guarantee that I’m eligible to take those meds and that I won’t have major side effects and have to stop taking them altogether.) Another friend of mine was more worried that I wasn’t available to go out with him on a Saturday night. He didn’t ask me how I was doing, if I was better or anything. He just asked if I was going to stay home. (“Errr, I lost part of my vision, have been spending the last days in the hospital for infusions, I’m mentally and emotionally drained and suffering from the side effects of the steroids, I’m sorry if I’m really not in the mood to go out and soothe your loneliness.”) That was two weeks ago and I haven’t heard from him since. I don’t want people to call me every day like my father would do if he knew, but a text or a Facebook message once would have been nice.

So it’s been almost three years since I got my diagnosis, and the social aspects of living with this disease are still the hardest for me to deal with. I can deal with daily injections, MRIs, bad news, disease progression, everyday symptoms and things most people wouldn’t even dream of, but I just can’t deal with the way other people cope, worry or just don’t care. It was a major issue with my ex-boyfriend and it’s a major issue with those around me who know. On the one hand there are those people who want me so bad to be fine that end up suffocating me. My mother was already searching for MS specialists in other countries, as if they were going to make any difference, before I told her to stop not only because I trust my neurologist but also because I’m too tired to meet her expectations. On the other hand, there are those people who don’t seem to care, or if they do they have a hard time showing it. Very few people are somewhere in the middle.

That means that, for now, as much as I hate it, as much as it saddens me, I think I’m gonna keep lying. Because it protects me. And because I’m one who needs to be protected.

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?~

Scared Sick – The Role of Childhood Trauma in Adult Disease


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.

Aftermath of a relapse: medication changes

So the results of my MRI came in yesterday and, as suspected, things aren’t looking so good. In the two years since my last MRI I have six new lesions, older ones have grown, and there was the inflammation in my optic nerve. This means my neurologist wants me to change medication fast. A “therapeutic escalation,” she calls it. And, for once, I agree with her.

I’ve always resisted moving up to the second-line treatments because of their risks. My first experience with disease-modifying drugs was with Avonex, an interferon, and that was a nightmare. Even though the injections were weekly, the flu-like side effects were unbearable. I took Avonex for ten months and there was no paracetamol that could help prevent the fever and the horrible muscle soreness that came with it. But that wasn’t the worst. Blood tests revealed my liver enzymes were high, my thyroid was malfunctioning, and the MRIs showed the disease was progressing. So in November 2012 I changed to Copaxone.

At first I was worried about the skin reactions Copaxone is most famous for. I had seen pictures on the internet, and knowing how sensitive my skin is I never thought I would make it. But fortunately I got along with it well. Never had any major issues and even ended up getting used to the daily injections and carrying them around with me in ice pads when I went away. It was a nice relationship that I didn’t want to quit, but my MS is unfortunately stronger than Copaxone.

So now I have to consider my options. There are no more first-line therapies available, unless I’m willing to wait for Tecfidera. At the hospital they told me more six months before it becomes available, but I’m not sure I trust that estimate. Tecfidera was supposed to be approved in 2014 and now they’re pushing it to 2015. That leaves me with Tysabri and Gilenya. They’re both much more aggressive drugs. More efficient, for sure, but also with more risks and side effects. They’re also newer. While interferons and Copaxone have been around for almost 20 years, these two are much more recent, which means risks in the long run are not fully evaluated yet. Am I scared? Yes, I am, but maybe it’s time I start taking more risks. And not because I don’t feel fine. Right now I feel like I could train for the marathon, have a baby, start a family, write a thesis, go on adventures and marvelous vacations. But at the pace the disease is progressing, how am I going to be in ten years time? I have to consider that carefully instead of relying on how I am feeling in the present.

Luckily, people on Twitter have given me great feedback on both Tysabri and Gilenya. It feels encouraging to know that they are responding well to the therapies with no major problems. I have to hold on to that. I also hold on to the countless studies that are published every month about multiple sclerosis. There are a lot of avenues open to explore, from creating vaccines to the viruses that may be connected to the disease, to investigating the leaky gut syndrome, developing remyelination drugs, discovering mechanisms to switch off autoimmune conditions, plus all the buzz about stem cells… There is a lot going on and I believe the pieces of the puzzle will come together and it will all bear fruit sooner than later.

Meanwhile, my IV treatments are over and my symptoms improved, though I’m still not seeing totally clear. My neurologist said that it could still take around three weeks for the methylprednisolone to fully do its job. During these three weeks I will be thinking about Tysabri and Gilenya so we can discuss it further when I see her again in the beginning of October. I hope the side effects of the steroids will pass, as I’m feeling accelerated and having a hard time sleeping. My blood pressure is bungee jumping and my heart racing. This is all normal, but still annoying.

Now it’s time to put my life back on its tracks after this interruption. Today is college night and tomorrow I’ll go back to work. I’m hoping I can see my girl friends next weekend and talk about frivolous stuff and forget about diseases. I do have a lot swirling in my head. After something like this you can’t help evaluating your life all over again and wonder about the future, about your dreams, daydreams and objectives. Oh, and the conflicts. This relapse reminded me of what is wrong with some of my relationships and is giving me an opportunity to look at so many latent conflicts. But I will leave all that for another post. Right now I’m going to get some air.

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.

Chronicle of a morning spent at the hospital

This morning I had my routine appointment at the NHS hospital to get prescriptions for my Copaxone. 

Here we have a mixed health system, where the NHS coexists with private hospitals and private practices. I was diagnosed at a private hospital because not only do I have insurance but I also thought that I was only going to be prescribed some simple eye drops for my double vision (yeah, silly me, I know, let’s skip that part) and therefore didn’t want to go through the long waiting hours to be seen at a public hospital.

I love the neurologist who diagnosed me. She’s the kind of doctor who will never say “There’s nothing else I can do for you.” She is committed to helping her patients, she always asks about me, the person, before asking about me, the patient, and she always worries about my mood as she knows my history of depression and the impact it can have on my MS. However, she had to refer me to the nearest public hospital because, she explained, the only way I could start on a therapy was to be registered and seen regularly by a neurologist at a public hospital.

There is a reason for it. As I mentioned in a previous post, multiple sclerosis is one in a list of diseases whose patients don’t have to pay for any treatment or medication. That is why people are required to be registered at a public hospital, so that the state has some control over how much it is going to spend. But if this sounds very altruistic to you, consider the following: the cheapest medicine for MS costs around 500 euros, in a country where the minimum wage is set at 485 and a huge percentage of people are unemployed, retired or on disability. Even if I make 1000 euros a month, my Copaxone costs around 800, which wouldn’t leave me much to live on for the rest of the month. So this is the best solution to ensure that thousands of people manage to keep living their lives the best possible way.

But this is where the generosity of the NHS ends. If unlike me you don’t have insurance and the possibility to see a private doctor, you will probably have to wait 8 months for an MRI. You will be stuck with a neurologist who doesn’t care. My NHS doctor is supposedly the greatest expert on multiple sclerosis in the country. I should be honored that he’s my doctor but I’m not. Because while he may know a lot about MS, he doesn’t look like he knows a thing about people – you know, the human beings around the lesions in the brain and spinal cord. He told a woman not much older than me that he had already given her all therapies available and that there was nothing else he could do for her. He forgets that multiple sclerosis is not only about disease-modifying drugs. That are things like physical therapy, occupational therapy, speech therapy that can greatly improve the patients’ well-being. But of course, the NHS is not going to give you any of that. You either have money to go elsewhere and look for alternatives or you’re done.

The differences between public and private are so unnerving that I can’t help but feel revolted. I wait in the waiting room to see that lovely doctor. I’m extremely uncomfortable as usual. The hospital is the biggest in the city, which means it is chaotic, messy and noisy. I see a lot of misery around me. People who look older than they probably are, dirty, beaten. People who tell each other every tragedy in their lives, ’cause it’s the only place they find empathy. People who – I am sure – had they been provided with proper care from the beginning, wouldn’t be in wheelchairs, wouldn’t be in such bad shape. There is a part of me who wishes I could help them. But there is another part of me who wants nothing to do with them, who sees me as separate from them. “I’m not like these people. I’m ok, I don’t even look sick.” But this is obviously wrong. I probably have more in common with these people now than I do with co-workers. And let’s not forget that it only takes me becoming unemployed to be in their shoes, with no other choices than relying and depending on that hospital. It could be me. It can still be me one day.

The doctor calls my name and I go in. It only takes about ten minutes. I waited for two and a half hours for a ten-minute appointment. He barely glances at me as he is looking at my file in the computer. Asks me how I am doing. “Fine.” Any relapses? “No, nothing.” You’re on Copaxone, any lesions from the injections? “No, everything’s fine. The nurse comes check on them regularly.” Good. He chats a little about Tecfidera probably being available six months from now, passes me prescriptions for another nine months of Copaxone, vitamin D, and schedules my next appointment. And that’s it. I’ll see you in nine months.

Alone vs Lonely

Yesterday a friend of mine and I were talking on Facebook Messenger. We chatted a little and he said, “You seem fine.” I told him, “I’m not so sure,” and went on explaining my hermit mode, that’s been going on since early this year. 

And then, I read this article online and not only did it struck a huge chord but it also changed my mind. I felt myself nodding from beginning to end. I already have a book on loneliness in my shopping basket, but I thought I should add this one too. 

I told my friend that this time on my own has enabled me to listen to myself, gather my strengths (and I need them so very much), and figure out what’s been going on with me in terms of mental and physical health. I’ve been reading and writing a lot, making sense of things. I’ve also been more creative and I’m also invested in my education, with my post-grad course. How else would I be able to do this in the middle of the crowd? In the middle of the very very noisy, opinionated and vampire-like crowd? My hermit mode hasn’t been one of self-pity but of self-discovery, self-development and empowerment. I’m convinced I will be able, with the help of my therapists and the support of those closest to me, to change certain attitudes and behaviors. 

When I say I’m like a hermit, it doesn’t mean I’m going to grow a beard (that would be fun) and move many miles away from civilization (I would have to come back to go to dance performances, the movies and eat Thai food or sushi). But I know what it’s like to face the stigma. Like the friend mentioned in the article, I know what it’s like to be eyed with a mix of suspicion, curiosity and pity when I spend a few days away by myself and eat out at restaurants. Some men see a young woman by herself and think they’re easy prey (they’re not, and they most likely wish to remain lost in their own thoughts).

But I’m not going to spend my free time stuck at home just because I don’t have a boyfriend or my holidays didn’t overlap with any of my friends’. Hell no. There’s too much I want to see and visit and learn before disease eats me away. Stigma is in the eye of the beholder. My alone time is productive, rich and peaceful, and I won’t doubt myself and apologize for it. Not anymore.

Considerations on leaving

Ever since the global crisis exploded, I’ve been thinking about leaving the country. Unemployment rates, corruption, tax money we don’t really know where is spent, plus the overall pre-war environment Europe is living make me itchy. Of course, leaving ends up being only a fantasy, because realistically speaking, I don’t know what kind of job I would be able to get in a foreign country. Besides, shy as I am, it would take me a long time to build strong connections, and it would get pretty lonely. Adding up to these issues, there’s multiple sclerosis getting in the way. I lack confidence about being able to learn new skills at a new job because my memory and attention are so errant sometimes. I also wonder what kind of therapies and treatments are available in other countries.

I know the European Commission has approved recently at least three new substances that have not yet been made available here. But since the rest of Europe is not on my destination list, let’s move on. On Twitter I see a list of the disease-modifying therapies available in Canada. 10 DMTs. Wow. I only have 6 of them in my country, and being that 3 are interferons, which I can’t take, that leaves me with fewer options. I immediately feel a little sorry for myself.

I shouldn’t have. After all, there’s the rest of the world. My mother was born in Africa, and when she hears me saying I’d like to emigrate she always asks me if I have ever considered Mozambique, her home country. I search online, but can’t find a single reference to multiple sclerosis in Mozambican websites. South Africa is close, but apparently the only DM drug they have is an interferon. I understand multiple sclerosis is more common among Caucasian populations, but still it is not exclusive.

Moving on to Latin America. Brazil. I know they have many cases there because a lot of Brazilians end up in our forums and Facebook groups asking questions. Brazil is growing, there are job opportunities, a rising middle class, the population is young, they drink caipirinhas (alcohol is very important)… but they have only 5 DMTs.

What was I complaining about really?

This year’s World MS Day theme was access. Clearly access to therapies is different depending on where on the globe you are. Something that I know in theory, but that gets even more depressing when I do a little research. Politics and all that. I guess I’d better just wait for the three new drugs that have already been approved by the European Commission to also be approved here. And those are the DM drugs. Let’s not mention symptom management drugs like Fampyra and Sativex. I’m not even asking for those. 

In the end, why would I want to leave? I’m living in one of the few – if not the only – countries where therapies for multiple sclerosis and other diseases are free, whether you’re rich or poor, have insurance or not. They’re the cheapest and least effective therapies. But they’re free.