Lately I’ve been working on something that I like to call “my quest for selfishness,” which I swear is not a bitchy as it sounds. Let me see if I can explain it in words other than the nonsensically ones floating in my head. 

Alright, so after writing that first sentence I wrote and rewrote my longwinded explanation three different times, but nothing seemed to sound right. So to make things easier, on myself and your understanding, I’ll put it simply. Most of my life I have always kept my mouth shut and put other peoples feelings first, wether it was for my own benefit of not. I do love making other people happy, but most of the times I never think about myself. This is something I had never really noticed until it was pointed by multiple people and therapists. Once it was pointed out to me, I realized how shitty it made me feel. But of course I kept doing it. Until very recently, I’m not sure what happened but I realized its ok to put yourself first sometimes. It took me until I was 25 to realize this, but better late than never I guess.

So I decided to make some small changes. I’ve been trying to speak up for myself more, really think about what I want in situations and I’ve been less indecisive by making decisions for myself without waiting for cues from other people. I know these seem like basic human things to do, but they aren’t things that I usually do. In the midst of all my “thinking of myself sprees,” I decided to get a tattoo. Which for anyone who knows me, is a very un-Teresa like thing to do. I think that’s why I had never done it, not because I didn’t want to, but because other people would think it was unlike me. 

                It's small and simple, but I love it. Now I guess is the part where I explain.

     Counting to three has been my mantra, so to speak, for a long time. Whenever I have to deal with almost anything MS related, I always count to three. Wether its injecting in a painful spot, moving my leg when it constantly feels like its asleep, or going into an appointment, I always count to three in my head and then just do it. This has helped me a lot through my MS related fatigue. MS fatigue is really hard to explain to anyone who has never been through it. Everyone gets tired, but its a different kind of tired. Sometimes the idea of simply standing up to turn the fan off seems like running a marathon. I got it as a reminder to myself to just count to three and you can get through anything. Also as a bonus I decided I wont explain to my children when I have them, I’m just going to tell them that I am that serious about time outs that I got the 1 2 3 you’re in big trouble countdown tattooed on my wrist. 

     I have a proposition for you. A proposition to discontinue the use of the phrase “how are you” as a common form of greeting. Because thats all it is most of the time, a greeting. It’s used in the same way as simply just saying hello. Generally anyone saying “Hey, how are you” doesn't actually care how you are. I work in customer service and am constantly asking people how they are, as well as being asked how I am myself. The conversation usually goes:

“Hi, how are you?”

“Hey, how are you?”

“So what can I help you with?”

     There is rarely an actual exchange of answers to that question. When there is a response its usually simply “good.” It doesn't matter if you are having a fantastic day or a horrible day, when a stranger at a store asks you how you are, you say good. Now I understand the common decency of asking someone how they are, but there is definitely a down fall to asking the question with out genuine interest. I know this seems like such a minor phrase but bear with me here.

If you aren’t doing well, constantly saying that you are “good” all day can be painful. I had a day recently at work where I was having horrible issues with my right eye, my vision was starting to blur and I was in a lot of pain. I have taught myself to handle medical issues at work and it generally don't let it affect me there. But this day I stepped aside for a minute to try to make an appointment with my eye doctor later that afternoon to see what was going on. I called my specialist first, which was a long shot as its hard to get appointments with him, and as expected he couldn’t take me until the following week. So, I called my regular eye doctor because I figured I should just have someone look at it and they could surely take me quickly. But they too couldn’t take me until the next week. 

I was distressed that no one could help me quickly, which really wasn't a very big deal I was just being sensitive because I was in pain. After those frustrating phone calls I went back to work and was immediately hit with a “Hi, how are you?” I instinctively said “good”, but in the back of my mind I felt horrible. For the rest of the day every time someone asked how I was and I said good it made me feel worse and worse. 

So I decided to try to stop asking people how they were the rest of the day and seriously, it is such an instinct. It took me hours of really concentrating to not greet people with asking how they were. It made me start to think about how many people I had asked that were having a horrible day and had to lie about it. You pretty much have to lie about it. When the cashier at the grocery store asks how you are and you respond with “horrible, I am having an awful day” the cashier will probably say they are sorry and hope it gets better, then tell all her friends about the weird customer at work today that was a total downer. 

Maybe we should start saying things like “hope you're having a good day” or “I hope you’re well” as greetings. Because even if the person you're speaking with doesn't care if you have a good day or not, its still nice to have someone rooting for you, even for a minute. 

  One thing I have always struggled with is a fear of change and the unknown. I like knowing exactly what is going to happen, how its gong to happen, and I like to have control. This can be things as simple as where I am going to dinner, or something big like moving to a new city. Now I know that makes me seem like a control freak, but this is something I generally don’t allow people to know about me. 

When going to a concert at a venue I have never been to, I have always looked up pictures of it before so I had an idea of where I was going to be. I love wedding rehearsals, because for me it is like a “mental rehearsal” and I can see exactly what everything is going to be like at the wedding. I’ve stayed in relationships when I knew we weren't right for each other just because I was afraid of the change that would come from breaking up (disclaimer: I know my boyfriend reads these posts, not you honey, you’re great.) I like to know what floor my hotel room will be on, how many people are going to be at the party, is it going to be a very loud bar, will I have a window seat on the plane, will there be assigned seating in this class or will I be able to sit by the door, I really could go on forever. This makes me sound crazy right? 

This generally doesn't prevent me from doing things though, I just internally freak out and pretend to go with the flow. Once I am in whatever place or situation I had questions about though, I’m fine. I guess its really the anticipation that makes me anxious. My mom always tells stories of forcing me through the door of my ballet class when I moved to Florida and was afraid of my new studio. Which seems ridiculous because I loved that studio and practiced there for many years. Also when I was afraid to join the high school track team and she just wouldn’t pick me up from school until practice was over, making me go. Which again seems ridiculous now because I ended up having a great time. Thanks mom. Moral of that story though, sometimes I need a push to start new things. 

I started thinking about this a lot this week because I am about to go through a lot of changes. I am moving to a new town, a close town, but to me a new town is a new town, my parents are thinking of selling the house I grew up in, I’m finishing up with school and need to figure out what I'm doing with my life, and I’m looking for another job. These are all things that individually would take me a long time to think about, freak out over, and plan. But they are all happening at once, and soon. I went a few weeks acting like it was all going to be great and none of it made me nervous. I was waiting for the break down. I knew there was no way I could be handling this all so well. As expected it happened a few nights ago, full blown hysterical crying alone in my bedroom. Hyperventilating, I feel like I can’t breath crying. I have never cried so hard before. 

I felt a lot better about it all now after talking it out with my parents. I don’t care how old you are, you always need your parents. These are all normal and positive changes, nothing that I should be upset about. But the worrying part of my brain doesn't know the difference between good stress and bad stress, so we treat it all as bad stress. I decided to dissect it all and look at it one thing at time. I tend to strive when I make lists, so breaking each thing down into its own little list seems to be calming my nerves. This post really makes me sound nuts, though I guess talking about things that make me seem nuts is kind of the point. I’ll be ok, I just need to learn how to be a real adult. 

We’ve been together for 25 years but there are still times when we feel like strangers. We go to sleep at different times, she’s always sending mixed signals, we argue about simple things like what to eat, and we both just always want something different. You would think by now we would have grown to know each other and become much more in sync. I know this sounds like an old married couple, but I’m talking about my body and my mind. One of my biggest struggles with MS has been figuring out my body. We haven't gotten completely on the same page yet. There are days when I think we are getting along great, but then the next day it all back fires. I’ll give you an example.  
      A few weeks ago I went to go see The Pixies, a band I have been wanting to see since high school. This is a band that I would picture seeing in a dimly lit beautiful theatre, surrounded by others on cloud nine and red wine (humor me and divulge in my visions.) But, rather they were playing a short set at an outdoor music festival. Where I was to be instead surrounded by floral head band wearing teenagers, drunk moms and natty light. Anyone who knows me well knows that an outdoor music festival is a nightmare for me. I have a lot of trouble handling being in the heat for long periods of time, a difficult feat living in Florida, it gets me very dizzy and disoriented. I also sometimes have a hard time handling constant loud music, another thing that sets me off balance. Now to throw in the anxiety problems of being surrounded by crowds all day.
  But these are all things I’ve been working on. I have been making myself go to the beach a lot lately, poor me right, to get used to being in the heat for longer periods of time. I’ve been slowly learning how to handle loud noises better. Which actually I’m surprised still bothers me as much as it does because I go to a lot of concerts. But, I stopped yelling at my boyfriend to turn the music down in the car. I have also been getting a lot better at being in crowds over the years, as long as I am not alone. We will get to my fear of being alone another day, I don’t mean poor me no friends alone, but physically being by myself. Anyways, all stars seemed to be aligning for this concert.
  It was a great day. The heat didn’t bother me much, despite my great decision to wear leather boots to an outdoor event in the sun. The noise didn’t make me dizzy and the crowds didn’t bother me at all. I went home with a minor sunburn and my pride still in tact. It’s frustrating sometimes to even have to consider all these things when going somewhere. I wish I could have someone ask if I want to go the beach and just say yes. Yes, with out having to think about if I have enough water, will there be an umbrella, is there a way for me to leave early if I need to, where can I pack medications just in case. Sometimes it doesn't phase me having to think of all these things, thats just how it is.
   The next day though, my body was now realizing what we did the day before. It was like I was having too good a time for my body to be paying attention, but when it had time to think about it the next day, it was pissed. I woke up feeling the exhaustion of the heat and the dizziness of the loud music. I was instantly angry and felt like my body had tricked me. But again, thats just how it is. Despite the day after blues, I was thankful for the good day I was able to have. 
      Someday we will get on the same page, hopefully. I wish my body could give me better warning signs, like texting me that its time to leave once its had all the sun it can handle. Until then though, we are stuck communicating through snail mail it seems. 

Let me just start this one off with a big thank you. The response to my first post was overwhelmingly positive. I had no idea I knew so many people who could relate to some of the  things that I’ve been going through. I was happy to see this, but also a little disheartened. It is a shame we are all so hesitant to talk about depression and anxiety, mental illness is such a common thing. I don’t like that word “mental illness”, its too harsh. Yes, I do suffer from anxiety and depression but, quite frankly, I would be offended to be classified as simply mentally ill. We’ll call it brain quirks. 

It’s a bond thats hard to describe when you find out someone goes through similar brain quirks as you. Anxiety can make you feel like no one in the world understands what you’re going through. When people are constantly tell you to “not worry” or to simply go do the things that make you anxious, it makes you feel like your brain is broken because you just can’t. But when you find out other people who go through the same thing, its a such a boost of confidence. You realize you're not broken. 

Sometimes even the people closest to you can’t understand what you're going through. It’s not that they don't care, they could care a whole damn lot, but if you've never experienced anxiety or depression it is so hard to relate to. There are very few words to describe how you feel during a panic attack or when you wake up with a gut feeling of depression. It’s usually easier to not say anything, rather than trying to explain it someone and ending up feeling like a misunderstood, frustrated idiot. But if there is anything I’ve learned from countless psychologists, you’ve gotta talk about it. Seeing therapists is not something I’ve ever been embarrassed about, I think that everybody could use a third party to talk to. Even if not about mental issues, it’s just nice to be able to talk without consequence. 

I started this blog to talk about my life with multiple sclerosis. But I guess that’s not all it will be, because multiple sclerosis isn’t my life. I’ve been learning that getting things off your chest is half the battle. Sometimes simply sharing you're thoughts out loud, or I guess on the internet, is enough to help things heal. So lets work on that. You’ve got issues, I’ve got issues, lets talk about it.

        I have multiple sclerosis. I know some people like to say “I have MS, but it doesn't have me.” But really, we are stuck with each other. Living with MS is definitely difficult, but I’m sure it doesn't like living with me either. I get anxiety, I get depression, I get upset and I get scared. It is no picnic for anyone having to live in my head. But MS is the only one know knows this, because I look ok. 

I never wanted MS to be “my thing.” Think of anyone you know, there is always something that you associate them with. The piano player, the artist, the athlete, the guy who really likes Dr. Who. Everyone has their “thing.” I never wanted people to think of my name and instant think of multiple sclerosis. So I don't talk about, and it has taken me eight years to realize how unhealthy that is. It isn't my fault that I have this disease, it isn't my fault that I have pain and discomfort, but it is my fault I have been suffering alone. So welcome, welcome to the chapter of my life where I have finally decided that it is not me against the world. 

I know that I seem ok. I know to most people I seem like a normal, happy, healthy girl, but you cant see the monsters inside of me. Right now I have no feeling in my right foot, my tongue and lips are numb, these fluorescent lights above my head are making me nauseous and I can not remember what I said to you five minutes ago. These aren't things that I want to complain about, they are just things that I wish you could see. When I want to leave work early because I can’t keep my balance and I literally can not articulate what I am trying to say to customers, I keep it to myself. Because I seem ok, no one can see that I am struggling. If I say I don’t feel well, surely they'll think I’m just lazy and I’m just looking for an excuse to leave. 

I don’t like to complain. I don’t like to let people in on what’s going on in my life when they ask how I am. “I’m good,” I say most days as the vision in my right eye gets cloudier. “I’m okay,” I’ll mutter while in the midst of panic attack. So it’s about time I complain, and if that means complaining on the internet to an audience I will never know then so be it. For years, I have shoved the reality of this disease in the back of my head and told myself I was exaggerating, that it’s not as bad as I think it is and that its not something I need to think about. Then once or twice a year I implode in hysterical emotions for a day. I keep the explosion to myself, and I start over again. 

       But you know what, it sucks and I am done keeping it to myself. I’m not sure what this will turn in to. It may be a blog that I only write in once, it may be something I continue. Anyone who knows me well knows I best express my emotions through writing. I like having time to consider and stew on my words. If I can’t find the perfect way to say something out loud in conversation, I keep it to myself. Which means I usually keep a lot of things to myself. I am done keeping this disease to myself. I am not writing this for a pity party, I am writing this because I fear I will explode if I don’t let these words out.