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?~

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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.

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.