Then the fog came

As I’m nearing the end of my holidays, I can’t help but to think about how they went compared to my expectations.

I drove here with a heavy heart. Filled with loneliness, sorrow, completely lost. Feeling invisible to the world, immaterial. I couldn’t think because there was so much background noise back home. So much to deal with, to go through. My head was foggy, groggy, couldn’t focus. I hoped to be able to think a little more clearly. But I’m not sure I accomplished that goal. Continue reading

Late to the party

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

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

Taking risks

I have a lot of drafts written here but I never finished them because lately I’ve been busy, tired and worried about many things. One of the drafts was about my daydreaming and how disappointed, sad and – yes – tired I feel when reality doesn’t comply with the preferable versions of my life I have in my head. Both my therapists say that it’s ok, and even healthy, that my mind can take a few breaks every once in a while, but me – I just know that every disappointment is like I’ve been hit by a bomb and I’d rather avoid them.

One of those things I was daydreaming about was a new job. I applied to a couple of them and I was pretty confident I would at least be called for an interview. In my mind I made the whole film: me driving every day to a new location, meeting new people, working on exciting projects. But they never even called for an interview and there I was, feeling there is nowhere to run.

And then my boss called me at work and asked if I would like to run my department. The department I work for is run by another department and there never has been a head or coordinator. I’d be the first one. For years I’ve been asking the gods for a more dynamic and communicative job, one in which I can get up more and talk to more people. My days are pretty much spent just reading and writing, and that’s put a lot of strain on my eyes, which as we know are not exactly in good shape. This would be the chance.

However, I’m also pretty aware of those things I’m not so good at, and one of them is dealing with difficult people. My colleagues in the department have worked for the company for many decades and they won’t take lightly the fact that a 32-year-old kid, the youngest there, is going to tell them what they are going to do and when. And sometimes I lose my temper pretty fast, especially when I’m really really really tired.

I gave it some thought but ultimately I realized that the benefits taken from developing new skills and having them on my resume greatly surpass the risks of me failing. Just like maybe I need to take risks regarding my medication for MS, despite not encouraging news of patients dying, maybe I need to start taking more risks in other of areas of my life. Shed the insecurities MS has given me and remind myself that things can go pretty rough very quickly so I might just grab what’s there for me. My healthy and oh-so-safe lifestyle hasn’t really shielded me from disease progression anyway – and it gets boring too. So at least for a while my life will be filled with new experiences.

The Open Focus Brain

wpid-the_open_focus_brain.jpegThe first time I heard about Open Focus I was told it was a little different from meditation. As I started reading though I realized it isn’t all that different, as I already tried some of the concepts during some meditation exercises.

Open Focus is basically a series of self-management exercises designed to train the way we pay attention. According to the author, much of our problems arise or are made worse by our style of attention, which is permanently in narrow-objective focus. Narrow-objective focus is the brain’s emergency mode and produces a lot of tension. Opening our focus and learning how to flexibly switch from one style of attention to the other according to the context will help dissolve physical and emotional pain, anxiety, depression as well as improve athletic and artistic performances.

Even though the premises (the author throws in research on brain waves and bio and neurofeedback) and exercises are interesting and compelling, I found the book itself repetitive. It could easily be cut by half its length without losing essential content. The exercises are a lot easier to follow with the audio provided on the website. However, I found the price of the mp3 way too high for the audio quality. Anyway, if you wish to learn more about it, you will find lots of resources on the website http://www.openfocus.com.

The feel good post

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.

No mind reading allowed

Many years ago I used to be upset because people hardly noticed how I was feeling about something. So one day I was told that people don’t usually carry a crystal ball around with them and they aren’t usually mind readers either. Simply put, they don’t guess how I’m feeling unless I tell them. I thought that made an awful lot of sense (why didn’t I think of that?) so I started working on expressing my feelings.

~ I later found out I need to learn how to deal with people who still don’t care even when I do express my feelings, but let’s save it to another post. ~

Fast forward to the present day, and it’s time to take it a step further. Because it’s just not enough to express your feelings and then wait around for people to guess your needs based on those feelings. Again, no crystal balls or mind reading involved. If I want them to know and meet my needs I need to express them.

~The fact that I need the help of a therapist to come to these conclusions kind of worries me, but hey, I’m flawed. ~

So let’s see how this goes. I haven’t told my boss that I need a raise or my infatuation that I need him to take his clothes off (*giggles like a 15-year-old*) but I have been telling people that I need to rest. I think that’s a start. There’s always a chance some of them might feel threatened by my assertiveness (“Really? She has needs? Now what?”) but the good news is I might start attracting different people and developing healthier relationships. And god knows how I need those…