Upping my game.

Only In Dreams

The other night, I had a crazy dream. Because of MS, I peed my pants in public, so I just took off my jeans, socks, and shoes and kept walking — rocking teal sequin-covered pee-stained panties with bare feet and an internet-meme t-shirt… which somehow lead to meeting Lady Gaga, who said she loved my style.

In this dream, she, apparently, was good friends with my friend Mike, who had vouched for my awesomeness via quick video cell phone chat. We got into a deep, philosophical discussion over dinner, and she said to me, “If you don’t do something fun, just to please yourself, everyday, you’re doing life wrong. I don’t stay friends with people who can’t have a good time.”

I woke up the next morning feeling very inspired, and I decided that it’s time to change my current way of being and live the sort of life that I would hope for my future children to live. My goal is to become a good example of how to be a happy adult to kids who don’t even exist yet, in the hopes that when they do manifest, I’ll already be a good role model for them.

This means less time spent on FB, more time spent reading quality books, writing both in this blog and for my novel, and creating art – whether it’s making jewelry, cooking, or creating clothes. It means the return of the daily “to-do” list and yoga. It means exploring Chicago in my free time instead of staying in my apartment all the time. It means conquering my fear of using the sewing machine when I’m alone, and cutting the excuses for not practicing guitar.

It means getting back to coding and learning the newest language updates to what I already know. HTML is now HTML5, CSS is now an all-the-time thing. I don’t even know if javascript is used anymore. I need to finish learning PHP, MYSQL, and I want to find out what it takes to create apps for Andriod and iPhones.

Basically, I want to be the independent, web-slinging, hard rocking, well-read woman I used to be… and I want to have fun doing it.

Easier Said Than Done

Of course, as soon as I had this revelation, my body decided that it was time to fuck with me. Maybe it was to see if the revelation wasn’t just passing fancy. Who knows. I had one good day, and then the next one was so bad that I couldn’t even get out of bed. I literally slept all day long (20 hours total!) and only ate dinner that night because Adam ordered pho for me. I was even having a hard time drinking.

I’ve had 3 weird episodes where my body gets super hot, and I start sweating profusely – like through clothes and bed sheets, it’s that much. I’m going through one right now. It’s 70 degrees in my apartment (that’s 21 for all you fans of celcius), and I want to rip off my skin, I’m so hot.

It feels, physically, just like having a panic attack, but I’ve got absolutely nothing to be stressing about. I’m not pregnant yet. We still haven’t found the house that’s right for us – so we’re not in the moving process. I’m just struggling to be a version of myself that I am happy with and get out of this rut of being a Facebook addict with no ambition, career, or hobbies.

I don’t know whether the sweating and heat is hormonal or caused by MS, so I made an appointment with my gynecologist next Tuesday to figure things out.

In the meantime, I’m just trying to wrap my head around the whole situation and be reasonable. I can’t expect myself to go out and explore Chicago when I’ve been having seizures for 2 days straight. I can’t learn code when I’m falling asleep. The only things I think I can do is to put time limits on FB, focus on being an effective housewife, and instead of yoga, do pilates, because it’s almost all floor-based work. Obviously, I’m also doing more writing.

All I Need Is Just A Little Patience

I know that change doesn’t happen all at once. I know that I need to be patient with myself while I transition into a better way of being. But anyone who knows me well knows that patience is, without a doubt, my worst quality.

Even though I’ve become far more patient over the last 7 years thanks to MS, I still want everything, all at once, changed to fit my ideal when I make up my mind about something. But that’s magical thinking and not how human behavior or thought patterns work. It takes steps and tons of conscious decisions to get out of a rut this deep.

It also takes a commitment to treating yourself compassionately. And, as usual, I’m down on the job there. I’m already salty with myself for not having eaten breakfast this morning or having attempted morning yoga. I keep bullying myself, as though hearing “GET WITH THE PROGRAM” is going to actually motivate me, make anything better, or make the change happen any more quickly.

What’s worse is that now that I’ve decided how I want to live my life, looking at how I have been living my life for the last 4 years or so causes me sadness and shame. To put it bluntly, in many ways, I gave up on life. I let the seizures win and became a shut-in. I didn’t even allow myself to imagine that I could do more. I mean, I still went to the gym 3-4 times a week in the hopes of improving my physical condition, but I haven’t had any lasting positive change to show for it other than now having a positive emotional response to the idea of going to the gym. At least that’s something.

The truth of the matter is that growth is difficult and painful even when it’s positive and totally desired. So, I’ll struggle in the muck today. Hopefully I’ll have an easier time struggling in the muck tomorrow, and eventually I won’t be in the muck at all.

Advertisements

Don’t worry. I’m still alive.

It’s hard to believe that it’s been more than a month since my last entry. I’ve been doing really well, and because of that, I’ve been spending more time going out, meeting up with friends, and doing stuff off of the computer.

Today, my amazing, creative friend Sara said that she was interested in featuring my blog on her blog, so I figured it’s only right to jump in here and update.

Like Night & Day

The biggest difference in my life lately has been that I haven’t been having nearly as many seizures as I had during the months of March and April, while I was experiencing an MS relapse. Here and there, there have even been days where I’ve been entirely seizure-free! Still haven’t made it a full week seizure-free yet, but I’m not complaining! During the relapse, I had gotten back to having seizures all the time – like at least 30 a day, so having 1 or 2 in a day seems minuscule in comparison.

And you wouldn’t believe it…the strangest thing happens when you suddenly stop having incapacitating seizures — you start to think you ought to be doing more! In that vein of thought, I’ve been working really hard to have more of a life outside the house.

Holy cow, my online friends actually exist off Facebook!

On Facebook, there’s a community of local folks who also have MS that I’ve been keeping up with for a while. Just recently, I decided that I really wanted to meet more of them offline. To that end, I’ve become more brave about riding the bus. 3 times in the last month, I’ve taken the bus to meet up with friends, and I couldn’t be happier about it. Not only did it mean socialization, but a few times, it also meant “cheesecake.” 🙂

In all seriousness, there’s something about knowing that I have people whose company I enjoy, who live within a short commute, that makes me feel a lot better about living in the Chicagoland area. It was really hard trying to feel like my own woman when all of my friends were Adam’s friends first — some for 20+ years. Finally, my honey knows that he’ll be able to have a guy’s night out, and I can happily hang with my girls. That sort of equality and emotional independence is incredibly important to have for a happy marriage.

The Great House Hunt of 2014

The biggest thing that’s been taking up my time has been hunting for a house. Over the last month or so, we’ve checked out a dozen or so houses. We’ve figured out the area that we’d prefer to live in, and it’s been hilarious seeing that we can purchase a place for ~$175,000 out in the Chicago suburbs that folks on HGTV show in California for ~$1 million. It kind of gives you perspective, insomuch as we all are looking for the same basic creature comforts, regardless of social class.

The only downside to watching so much HGTV is that I start getting these crazy notions about buying a fixer-upper. Don’t worry! That’s not going to happen. We definitely don’t need the added frustration. That being said, if we were independently wealthy and could afford contractors to do all the work for us while we luxuriated in a hotel suite, it would be totally fun. I know this, because I both love hanging out in hotels and have spent a ridiculous amount of time building and decorating fabulous houses in Sims 3. 🙂

We still don’t think we’ve found the right place for us yet. For whatever reasons, architects in this area seem to think that you don’t need a master suite and having 3-4 bedrooms means you only need 1.5 bathrooms… oh, and that a raised ranch floorplan is a great idea. With my physical challenges, I personally am not a fan of entering a house and already being on a staircase landing. Stairs are sometimes frightening to me because when I’m post-ictal (after seizure) I have a very hard time with balance.

I really wish we could find a nice 4 bed, 3 bath ranch (not raised ranch, just regular ranch) or bungalow in walking distance to a grocery store or at least a bus line that goes to one… but so far that hasn’t been in the cards. We did, however, find a nice 4 bedroom tri-level with 1.75 bathrooms that we’re seriously considering. If we were to get that place, I’d want to renovate the lower level and turn it into a master suite with a double-sink vanity, soaking tub, and separate shower. It would just take a couple of years before we could save up enough cash to do the work.

kittiesOf course, Adam and I are both looking forward to having a yard for Brisco. We’re fine with taking him on walks, but we see how happy he is when he gets to hang out at the parents’ place and run around the yard with Seuss.

On the topic of fuzzy things — we’ve also had some foster kittens recently. Anna, Elsa, and Freya, 3 sisters – all little cutiepies. Freya and Elsa got adopted last week, so we’ve got to bring them to PetCo tomorrow to go to their forever home. Anna has a couple of applications out for her. Hopefully, she’ll be going home soon. Here’s a pic! I wish I had a better one, but these babies move so quick that it’s hard to catch them in a picture!

Another benefit to moving to the ‘burbs is we’ll be closer to the Romeoville Humane Society, which will make fostering easier. Driving 45 minutes to and from picking up kitties is kind of a pain in the butt. My only quibble with the suburbs is that the public transportation situation is much less awesome than it is here in Chicago proper. At least they have a shuttle program set up for those of us who are disabled. I may have to plan things a week in advance, but at least I know that I’ll be able to get places I need to go.

Other than that, there’s not terribly much to report. I hope you’re all doing well!