For me, 2015 is just getting started. I finally wrapped up college (it’s out of my hands now) and my year as administrator of the building I live in is over (good luck to the neighbor appointed for 2015). While I’m still waiting to change medication (I had a relapse in September, will only be starting Tysabri in March, thank you system for the wait, the suspense is killing me) I don’t think it makes sense to keep my life on hold. Continue reading
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?~
Today I went running for the first time since January. Unlike many chronic illness sufferers, the heat doesn’t bother me that much. The cold, however, (and the wind and the rain) really does me in. No matter how much I warmed up, I could hear and feel my knees and ankles cracking like an old lady’s. Also, I had to have warm clothes on before going on, otherwise I would freeze, but as soon as I started running I would overheat and would have to take off some of the clothes in the middle of it (not a very fancy strip, I can assure you) and carry them with me until I finished.
So I decided to stop for a while. By the time the weather got better it was the end of the semester and I was way over my head with work. Then I went away on vacation. So here I am, 7 months later. I went to the same circuit I used to do and – surprise – I wasn’t that bad. 😀 I think I did it in more or less the same time, the only difference is today I took several walk breaks whereas before I would just take one.
Either the exercising I’ve been doing at home to compensate for being on a hiatus from my dance classes and from running has kept me more in shape than I thought, or while on vacation I worked out more than I thought from swimming in the ocean and hiking in the woods. Whatever it was, I feel pretty good about myself right now. As soon as I started work again on Monday I felt my body yelling at me, “What is this sitting in front of a desk all day? This isn’t natural. Go on, get on the move or I’ll be really sore and achy.” It did get sore and achy by Wednesday and Thursday. Luckily I found out that stretching improves the pain, and as I work mostly by myself in a cubicle I started using the book shelves as ballet barres when my legs and back need a break. (And now I’m going to recommend ballet classes to everyone. Kidding. 😉 )
I don’t know how I’m going to wake up tomorrow, but I know that even if it’s bad it won’t stop me. Whether I go back to dance classes next year when I finish post-grad, or keep exercising at home, or try to keep running despite winter, I can’t really stop moving. I feel that the only reason I’ve never been paralyzed due to MS is because my brain learned during years of practicing several contemporary dance techniques that there are many ways you can make a movement and many ways your feet, legs, hands, arms, head can get to where you want them to be. When something feels wrong, the brain gets creative and flexible and forges new pathways to achieve the intended result. Our bodies and minds are endless resources. I’m going to keep working on never running out of those.