I was talking to my boyfriend over dinner the other night about how much I love writing this blog, but that I've had nothing new to write about at the moment. My health is great, my mood is great, there are no new MS things to rant about. He brought up a great point, that that in its self is something to write about. I write on this blog only when I have something to say about living with MS, and if reading this blog is your only insight into my life than it would seem that I'm always struggling. But I'm not, and I appreciate the good days more than anything.
     MS makes me grateful for the smallest things. Days that I can see clearly, feel both my feet, wake up with out the room spinning and walk in a straight line are all days I'm thankful for. One of the great things about having MS is that it has made me thankful for so many small things that I used to take for granted.
     I talked recently about having started a new medication, it was giving me some trouble for a while. But things have turned around and it has since been amazing. I haven't been on it long enough to see how its effecting the progression of the MS, but in terms of side effects alone, they have all dissipated and this is the best I've felt on a medication in years. Taking a pill twice a day has been amazing compared to injecting myself nightly. It's so nice being able to just take a pill and go to bed.
     I had a neurology appointment this past Monday and my doctor said it was one of my best visits in a while. There is a check list of current symptoms you have to fill out before you're appointment, and this was the first time in a while that I only had one thing to check off. That one thing was fatigue, which I talked about recently. My vitamin D levels were a little low, but everything else looked great. I hate going to neurology appointments because I never know how its gong to turn out. I have gone to countless appointments feeling great but then finding out that there are things wrong. So it feels amazing when I find out that my body feels the same way I do, because sometimes we don't agree on things.
     I have been beyond thankful for my family and friends who have been there for me in the last four or five months when I was going through some hard times in both my physical and personal life. It makes a world of difference when there are amazing people supporting you when you are going through a hard time. It is even more amazing that once that time is through you have the same people to enjoy the good times with. I have been incredibly thankful for my boyfriend, who is very much responsible for the good mood portion of my life. For my parents, who I love dearly and have continually supported me in every aspect of my life. All of my friends, who are a constant ring of support and love, and for my best friend, who inspires me daily and is the hardest working person I know.
     A few days ago I opened a time capsule that I made in my class in fourth grade. It was to be opened in 2015 and I had forget about it before this week. I was nervous to open it. I assumed that fourth grade me expected to be married with children and have an amazing career by the time I was 25, all of which has obviously not happened. I opened it expecting to be disheartened and disappointment I hadn't met fourth grade Teresa's expectations. But I opened it anyways. Where I was to write my expectations for the future and what I thought my life would be like, the only thing I wrote was "when I grow up I want to be a writer, because I love to write and it seems fun." So, I guess I'm on track after all.
   

     I am often open and descriptive when talking about most things that are happening to me due to multiple sclerosis, but chronic MS fatigue is something I have never been able to really describe. Fatigue is the most common MS symptom and is the reason most people with MS stop working, and it sounds like the dumbest thing in the world.

     You're just too tired.

     Not in pain, not numb, not tingly, just tired.

     I have maybe two or three weeks of extreme fatigue a year. Not enough to hinder my ability to work or function on a regular basis, but they are horrible weeks. It's like everything is impossible. It's not even that you feel like you want to constantly sleep, you just don't have any energy, and there is no reason. It always makes me feel horrible. I will have absolutely no excuse to be tired, I will have had a good nights sleep, maybe even slept in, but it feels like I haven't slept in days. It's really hard to explain that, no, I'm not being lazy, but my body physically will not allow me to do things.
     I'm generally a pretty tidy person, clutter drives me nuts. But when I get on these fatigue kicks, I have zero energy to do anything about the clutter that's driving me nuts. I leave the clothes on the floor, the papers all of over my desk, and my bed unmade. A good way of seeing what kind of day I'm having is to look in my room to see if my bed is made, but don't do that, that's creepy. It just makes me feel gross to not be able to do such simple tasks. My absolute least favorite thing about being fatigued is cooking. When I'm alone I have zero desire to cook anything. I'm vegan, so I tend to have to do a lot of cooking. I get too tired to cook which puts me in a bad mood because I'm hungry, but then the being hungry gets me ever more tired. Its an annoying never ending loop for days. I have had more granola bars for meals this week than anyone ever should. If I never had a granola bar again for a long time that would be great.
     I came across this video a year or so ago and it was awesome seeing  someone else explain exactly how I felt, especially someone my own age. Generally, most MS groups and forums are filled with people much older than me.

     Like I said these weeks don't happen very often for me, but it is definitely happening this week. I started a new medication recently and my body is just completely run down from adapting to it. It feels like I can sit all day but the inside of my body is running a mile a minute and its exhausting. The only great part of these fatigue weeks is that I feel a little justified in my netflix marathons. So for now I'm just going to ride out the week with Bob's Burgers.
     To further prove this complete exhaustion, I just put this post on my pastry recipe blog instead of this one.

     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.