Invisible Disease

So I'm sitting here at work, going out of my mind with boredom. Winter in Maine is not a hoppin' time in the tourism industry. I was complaining about how bored I am to @neenuh_bee and she suggested I write a blog.

Right. Because it's that easy. I'll just sit down and write words without any thought of content. That's a good way to keep people interested.

But now the pressure is on to come up with something worth saying. Otherwise, I'll look like the guy who can't work under pressure.

So what do I write about? I immediately went to my muse, Twitter, for inspiration. Did a couple hashtag searches, #mulscler, #FUms, #MSSucks to see what people were saying. During this, I realized people were having a conversation about my tweets. Brilliant! I'll blog about things people are already talking to me about!

There has been a conversation happening about how difficult it can be to express how you're feeling to a boss, coworker, friend, or family member who has never experienced any of the feelings we have. Things which seem so normal - so routine to us - are incomprehensible to someone who suffers from a Normal Life.

The key I've found is keeping my MS part of my ongoing, open conversation. Not that I sit around and just complain about shit all the time, but any time I notice something that might be out of the ordinary for a "norm," I mention it just as a matter-of-fact kinda thing.

No one really wants to be lectured, and no one wants to hear you bitch. But if you keep MS more on the level of "here's an interesting thing that happened to me" kinda thing, people will start to better understand the way the disease works for you without having to take 40 minutes for you to lecture them.

This way, once everyone kinda understands how you function on a normal basis, they'll be more empathetic when something more serious happens.

"Oh, your hands are usually numb and you work just fine. This must be exceptionally bad. I'm sorry to hear that."

Rather than, "Every one's hands fall asleep. Quit whining."

Keeping your "normals" out in the open is helpful to give people a scale on which to relate to you.

You have to remember that no one without this disease can understand what it's like. Only you can explain it to them... and prevent forest fires.

I hope this helps.
NickWithMS

You can never have too many scripts.

The title of this blog may lead some of you to believe that I have an entire cabinet full of prescription medications just sitting around. Some that juice me up, some that bring me down; some for blood pressure, some for stool softening.

First of all, you're wrong. Second of all, why were you thinking about my stool?

see what i did there?

As an amateur film producer, I write scripts. Lots of scripts. Scripts for shows and films I may never produce. I just had to stop production before it even began on a project I've been working on with notorious +Jack Fossett .

We had this idea to write a series about a college band trying their hardest to become popular. They find themselves bickering over creative differences and having to work their way through underwhelming and, often times, incredibly awkward gigs. A love story develops between two of the characters which always makes for entertaining content and the audience falls in love with our series, it gets picked up by NBC and we become millionaires.

That was the dream.

At this point in my "career," I have no money to pay actors to be in my productions. Any money I do come up with is spent buying the cameras, lenses, lights, cranes, filters, and microphones needed to make the production happen in the first place. 

there's a lot more to it than people think.

Getting people to act for free isn't a difficult process. Simply put an ad out on facebook, twitter, and craigslist asking for people who want to see their own faces on YouTube and PRESTO: You've got free actors.

The problem with asking people to donate their time to a production is that most people don't have a whole lot of time to begin with. Everyone's got enough to spare when it comes to getting together one weekend to work on a project... but what about next weekend? What about the weekend after that?

Producing a series requires me having access to the same group of people on a regular basis. One I lose my cast, I lose my production. This uncertainty scared me. Do I want to get myself invested in something that may end up falling apart before I even really starts? 

With this, I decided to tone it down a bit. I decided that maybe a series isn't the best way to start. I decided to make a short film.

This was perfect. Short films are self contained. They can be produced in a few days and when it's over, it's over. If one of the cast members decide they no longer have time to dedicate to my productions, there's no issue. They're just not in my next production. The cast can be constantly changing which means no one has to be at the mercy of anyone else for an extended period of time.

Stress free production, right? Well, no. No production is stress free but this allows more flexibility.

So why am I writing about movie productions in my MS blog?

I'm glad I forced you to ask!

This is a great metaphor for life with MS.

You can never have too many scripts.

Always have a plan B and C and D. Always have something else to fall back on. Multiple Sclerosis is so unpredictable. Today, I feel great. I have no idea what tomorrow will bring. If your life is a production, your body is your cast and crew. You work at the mercy of their availability. They may be here working hard for you today but they may not show up for work tomorrow. 

Focus on short films, not series.

Put together a list of short term goals and projects. Do as many little things as you can right now. Don't set yourself up with long term goals which rely heavily on you feeling exactly the way you do now. We all know that's not likely. Don't get me wrong, long term goals are important. Just don't let yourself get so caught up on dealing with the chaos of the long term that you miss opportunities to live your life today.

Appreciate your cast.

Your body works for you but your goals are totally in its hands. Take care of your body. Even if you can't always eat salads and get to the gym, do little things to keep it happy. Take a nap when it tells you it's tired. Drink water when it tells you it's thirsty. Always remember to play. All work and no play makes Jack a dull boy. A good director knows when to kick back. If you push your cast too hard without giving them time to have fun, they're going to resent you. They're going to act out. They're going to leave you when you need them.

Go out there and start producing. Make your life the best adventure it can be. But always remember: The production relies on all the parts working together so pick your productions based on the tools you have. Don't attempt the impossible, it rarely works out. Do what you can and enjoy it.

NickWithMS

#Anxiety

My anxiety is getting worse. I feel myself being overwhelmed by even the simplest of things. Today, after buying $200 worth of groceries (which ironically isn't the part that stressed me out) I found myself almost brought to tears by the task of putting them away. My counter tops were cluttered, my fridge had things that needed to be thrown away, my cats were playing with the plastic bags, I had to separate the meat in to Vacuum Seal bags - A seemingly endless lists of irrationally impossible tasks brought me to my knees.

Do I pop a Lorazaepam and fight the problem with drugs? No. Loraz takes about 20 minutes to kick in anyway... by that time, the feeling will pass. I threw the important stuff in to my fridge and logged in to Twitter to find a number of amusing posts by @neenuh_bee (if you don't follow her already, she's a sarcastic, 20-something, girly-girl, wine enthusiast who is also blessed with the gift of MS.)

I waited about 20 minutes while CassyWithOutMS took care of some things and then everything was fine...

These little 20 minute vacations I'm needing to take from my own life are becoming more and more frequent.

I have an appt with my Neruo on 2/5. I'll talk to her about it then. In the mean time, I'm gonna try 1000IU of Vitamin D.. I hear that helps.

Nick.

2013 has gotten of to a wonderful start.
A lot has happened so far this year and I haven't gotten a chance to inform everyone. 

First: My Disease

My MS has been back in remission for a full year. It flared up on me last Christmas and hasn't reared it ugly head since. I have been taking Copaxone pretty regularly over the past year and have felt great.

As anyone who currently deals with MS knows, being in remission doesn't mean everything is A.O.K. I've spent the past week with diminished feeling in my hands. This happens to me for a few days every month. It's no big deal. It affects my dexterity which, thus, affects things like typing, playing piano, playing guitar, eating sushi with chopsticks... #FirstWorldProblems.

Winter time seems to be good for me as long as I remember Life Rule #5: Hydrate. Drinking enough water is important. I have cut almost all other beverages out of my diet completely and try to drink 3qt to 1gal of water a day. This sounds like a lot but when the dew point is -9 degrees, (that wasn't a typo. the dew point today is 9 degrees below 0.) the air takes most of the water back out with every breath I take.

 All-in-all, everything is going well with my MS.

Second: My Goals

In October, I set goals for myself to be completed by Jan 1, 2013.
- Be able to run 5 miles in under 50 minutes
- Purchase the [Canon Rebel T3i] and start producing a YouTube miniseries
- Complete the Calamari Special debut album.

Goal #1
I can not run 5 miles in under 50 minutes. In fact, I have only been to the gym twice since Thanksgiving. I feel so lazy. I ran my NickWithMS 5K in September and basically stopped running after that. I went back to the gym 2 weeks ago and attempted to run 1 mile. I felt like I was going to die. I keep telling myself that I'm going to go back tomorrow. Every day, I say "tomorrow will be the day I go back." The nice thing about "tomorrow" is that there is always another one to fall back on. I will go back. I promise I will go back... Maybe this weekend.

Goal #2
My father got me the Canon Rebel T3i for Christmas. It is absolutely wonderful. Not only are the rebel series cameras great for any semi-professional photographer, they are also fantastic for amateur film makers. Keep an eye out for productions I'm working on via my film channel:

[evlasproductions]

I am also using the T3i to post video blogs on my NickWithMS Channel

[NickWithMS]

As far as the production of my YouTube series, it is written and mostly cast. 

Production is becoming more of a pain in the ass than I had originally anticipated. I have a new respect for people who produce movies. I suppose it is a little bit different when your cast is there as their job and not donating their time to do you a favor...

Goal #3
The Calamari Special album is still being produced. The epically talented +Jack Fossett  has been lending his guitar talents to the album and my friend Ross will be coming to lay down some sweet drum grooves to spice it all up. As songs are completed, I will post them on my [@Twitter] and my [Facebook] so keep an ear out!

My Life

As many of you know, this past July, the lovely CassyWithoutMS accepted my proposal and agreed to marry me. Originally, we had planned on getting married in the summer of 2014 in order to give us enough time to save up the cash needed to plan such an event. As we explored our options and started adding things up, we realized that things were going to be less expensive than we once thought. Armed with this brand new information, we have decided that we are going to dive right in and get married on July 13, 2013. How lucky is that?

Also, as I posted on my twitter today, I had a conversation with my boss about life. He stumbled upon some of my YouTube videos and started asking me questions and, of course, we started talking about my MS. He admitted that he knows nothing about the disease so I explained how it all works and how it affects me personally. I also explained how, for many people living with MS, it is an invisible disease. I could be having a flare up and, to an outside observer, be showing no symptoms of being sick. Also, with the unpredictability involved with a disease like MS, I could be totally fine one day and incapacitated the next. He listened intently as I explained everything I could think to tell him about my life and my disease and ended by saying "If there is ever anything you need, don't be afraid to let me know." He was quite supportive and understanding of how the conditions change at a moment's notice and reassured me that he would never use my condition against me.

After making mention of this conversation on twitter, I was surprised by the explosion of responses I received by people saying that they had a completely different reaction from their employer when sharing news of their disease. Some of them asked if I worked for a small, private company where things are more flexible. I work for a multinational corporation which grosses over $16BIL a year. By no means a small company. In fact, I'm willing to bet that every single reader of my blog has not only heard of the company by whom I am employed, but you have probably used one of our products or services at least once in your life.

I won't mention their name unless they're willing to pay me for advertising ;-)

So, that's about it.
Happy 2013
Keep an eye out for my Video Blogs on my NickWithMS Youtube account and, as always, follow me!

youtube.com/nickwithms
@nickwithms
facebook.com/nickwithms

Nick

So a blog I follow is giving away a free 50mm lens for either Canon or Nikon.

For those of you who know about photography, the 50mm is the standard. It's a must-have for any photographer's kit. I entered to win it (fingers crossed) along with some expert tutorials and some marketing materials.

God I hope I win!

Check it out here if you want to enter too!
http://cravemyphotography.com/blog/business-jump-start-giveaway/