It’s been a long long time, I know. And I don’t even know how to explain my absence. Amidst fatigue, trying to manage it and balance it with all the activities and interests I have, time flew by. I also sometimes get so bored about my life and my complaints (it’s always about fatigue, as you may have noticed) that I don’t want to bore you too. And because of that, I only wanted to go back to writing when something big changed in my life that I could tell you about. Something big and for the better.
But, you know, sometimes no change is good too. Last month I went for my annual MRI and yeah, you guessed it, there was no change compared to last year. No new lesions, no inflammation, no sign of disease activity. I was surprised and so glad. I didn’t make a big fuss about it, like calling everyone right away, because after five years of being diagnosed I’m tired of having my entire life revolving around MS. But believe me, I’m happy. Quiet but happy. And I think that for two consecutive years not having signs of disease progression is like my MS is giving me permission to leave it alone. It’s like it’s telling me to go live my life.
Now I just have to figure out what “living my life” is without the constant fear of getting worse. Ha.
So there you have it. I occasionally visit your blogs though I must admit that I’m enjoying the social media diet, especially when it’s not so much the physical fatigue that’s killing me but the mental one. I went back to practicing meditation 15 minutes every day to deal with the mental fatigue. And I say “practicing” because I can’t really meditate with my hyperactive mind. I try my best and hope some day I’ll get there. My neuro prescribed Ritaline to help with the fatigue but I haven’t tried it yet because I’m still trying to manage it on my own. Let’s see how that goes.
No big changes, just small ones, some good, some bad. It has been an awful year at work (changed for worse) which has been the main culprit of my mental fatigue. College was also tiresome and disappointing. On the good side, I’m volunteering with three patients’ associations and I found a new motivation and purpose with that. I also started dating again, so far with mixed results (especially because I can’t figure out what I want from men and relationships) but I don’t care because I hadn’t dated in two years, so I think that’s positive.
And that’s it. I love you all and miss you and hope you are well. Even when I don’t come here I often think of you. Sending warm hugs to you all. ❤
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
The 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 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?~