I have mostly exclusively dated people who knew me prior to my MS diagnosis. Given this I had never been in a situation before where I had to explain my disease and what it means to someone I was dating and had just met. Recently though the tables have turned and I have been exploring the world of casually dating with a chronic disease.

And it's weird.

     It feels like starting a new job. You dont want to lead in your interview with the fact that you have a chronic disease but also know you shouldn't lie about it too much because it may effect your job at some point. It's gotten awkward,  I know I have made people uncomfortable, but its been an interesting learning experience. 

     There have been times where I have tried not to say anything on a first date, in fear of being labelled with MS to soon, but things happened that made it hard not to say it. Once I was having some vision issues due to optical migraines, it was making it hard for me to drive too far at night because the lights would bother me. I tried to awkwardly explain that I needed to meet somewhere closer to me because I couldn't drive far. This I'm sure just made me sound like a brat who didn't want to be inconvenienced with going out of her way. Things were a little strange, but once I explained what was really going on it was no big deal.

     I don't know why I always expect it to be a big deal. It is the furthest thing from a big deal to me, and I don't know why I would expect people to feel other wise.

     Other times it's the first thing I lead off with, which I think usually just throws people off because that's not usually the type of conversation you expect to be having on a first date. Most people don't know too much about the disease and sometimes it turns into a question and answer learning session. Even if we don't see each other again, I guess I'm spreading awareness? Or something.

     Sometimes I don't mention it at all and it feels awesome not talking about, because sometimes I just don't want to talk about it. But weirdly, it feels like an act. Like I'm playing a character. While I'm not really lying, no one has ever just asked"hey do you have a disease you want to talk about?" I still feel like I'm lying by not disclosing it. 

     All in all though, it has been an interesting experience learning different ways to talk about. Aside from first dates, there are going to be tons of situtations in my life where I am going to need to gauge if I need to talk about it, and what I really need to disclose. The last thing I ever want is for people to feel sorry for me, and I've been learning new ways to put it across as something that needs to be taken seriously, but not pitied. 

     Let me just start this one off with saying that really, I’m fine. It’s been a weird medical month for me but things are starting to shape up. I know it scares other people when I go through things like this, but honestly it kind of becomes comical to me. It’s hard not to just laugh when so many things go wrong. It’s become kind of therapeutic to me to think through and write out my medical and mental hardships. I feel that a lot of this blog has been mostly for myself, but if you’d like a view into whats been going on in my brain this past month, you’ve got it.

The first episode in my month long medical saga started a few weeks ago. I had just come back from a regular eye appointment and was eating lunch while checking my email. Out of no where I lost complete vision in both my eyes. I surprisingly wasn't too bothered by this at first, living with MS I think you just get used to weird things happening. I waited a few minutes until I realized I should probably try to figure out whats going on and stop sitting in my personal darkness. I was home alone and wasn’t sure what to do. Luckily I was sitting next to my phone, I was unable to enter my password in or see my contacts to call anyone I knew so I asked Siri to call 911. 

It was the first time I ever called 911 and I was weirdly nervous about it, like I would be bothering them or something. But as I’m sure most people would expect they weren't as annoyed with me as I was somehow oddly thinking. Being in the hospital was a little freaky, just being poked, prodded and scanned for hours made me feel like an inanimate object. My vision eventually slowly came back and I was released. I went home a little shaken up but I felt back to normal by the end of the night. They got in contact with my neurologist and had eluded that it was most likely caused by stress. When they spoke to him he also informed them that in my last MRI they found three new lesions on my brain. I was instantly pissed by hearing this, because had I not ended up in the hospital I would probably have never been informed of my MRI results. I’m going to save my rant on my frustrations with communication in medical care for another day, I could go on for hours about that one. 

The next day I was making rice on the stove, the water was boiling and I was a little dizzy and distracted thinking about the day before. In my state of mindlessness I somehow dropped the entire pot of boiling water on my right foot, slipped on the tile and hit my head on the counter. I guess I just hadn't gotten enough of being in the hospital yet and headed back over. Turns out my head was fine, the burn on my foot was painful but not too serious. It’s starting to heal now and I look like I have the wrinkled foot of a grandma. To top it off two days after that I was told I had a viral infection and had to spend a few more days laying on the couch. But like I said, at this point it was really just funny. At this point as well, things with my boyfriend had ended in the midst of all my medical adventures. It definitely added some stress to everything and my body never reacts well to stress. I have been pretty open in these posts but I am going to keep my breakup to myself. 

So back to my MRI results. After a long appointment with my neurologist we decided that the medication I have been taking hasn't been working, which was hard to hear. Since I was diagnosed at 18 this has been the third medication I have taken because they haven't been working for me. It’s scary to not know or have control over whats happening in your brain, its also scary not being able to find a medication that works yet. It was particularly frustrating hearing this news because at the time of the appointment I felt perfectly healthy. Its just weird to be able to feel fine but know your body is going through a hard time. 

On the bright side of having to switch medications though, I am going to start taking a pill. Every MS medication I have taken so far as been an injection. It’s become something that I am just used to and don’t complain about, but the idea of not having to inject myself every night sounds pretty awesome. Sometimes I’ll get home late exhausted and hate not being able to just crash but instead having to go through the process of injecting myself. It will be nice to be able to just take a pill and go to bed. I’m going to be starting the pill later this week. On Friday I turn 26, which means I will be kicked off my parents health insurance. At which point I will start my insurance plan through my job. We all agreed that it made more sense to wait until the plans had been changed to go through the process of getting the new medication. I am pretty nervous about starting the new meds, I’m sure I’ll write something talking about it more shortly after starting it. 

     Well that’s pretty much a run down of how August went for me, I have pretty high hopes for September.

I’ve had a few people asking me why I haven't been texting them back this week or why I’m haven't been at work and I figured, well I made this blog for the sole purpose of talking about my MS and I guess I should do that. First of all, I’m fine. Really I’m ok. I’ve just been going through a few bumps in the MS road this week. 

I’ve been having some strange nerve pains lately. The main one being in my back, it  constantly feels like I have a road rash running down my spine and someone keeps slapping it. With that has come some off and on stabbing nerve pain in my fingers and thighs. I’ve just been having a difficult time standing for long periods of time, it gets uncomfortable. I really just feel generally uncomfortable. Whenever anything physical happens with the MS it tends to aggravate my cognitive issues as well. I just get very easily flustered and confused. Everything is being looked at though, I had blood work done early this week and will be getting an MRI on thursday. Hopefully I’ll get some answers next week. Until then I’ve just been trying to take it easy, which is very boring.

I tend to shut down socially when things like this happen. When anyone texts me just to say hey, I don’t feel like telling them the whole story of what’s going on. Don’t get me wrong I fully appreciate my friends and coworkers being concerned with that is happening. But sometimes I just get sick of talking about it. So I tend to just ignore people and not reach out to anyone. I know people get concerned for me when things like this happen, but it doesn't really worry me. I haven't had a relapse yet that I haven’t fully recovered from, and I just hate having to convince everyone it will go away.

If anything relapses only get me mad. I don’t get worried or sad, I usually just get angry. I am pissed that I have to baby my body for a few weeks. You know when you stub your toe or slam a hammer on your finger and you get intensely pissed off for a few seconds. I just constantly feel like that right now. I’ve been having to sit still as much as possible and it has just gotten me bored and grumpy. So if you would like to text me a story or sit on the couch with me that would be great. 

     Really though, please do not feel bad for me. I’m fine. I just know people have either been wondering whats been happening, or I haven't been wanting to talk about and figured I should let everyone know. I appreciate all of the concern though, you guys are great. 

  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.