I never thought I would ever say that I missed working in retail. It's not so much retail that I miss, but more so human interaction. I'm currently working at a very small office with only 7 people. I'm sure they are all fine people, but we are on the phone all day and hardly interact with each other. I think its just been bumming me out lately that I don't interact with anybody for nine hours a day.
     Sure I'm talking to people on the phone all day, but that is entirely different than actually talking to someone. People get the same superiority complex that they get when speaking to someone over the internet. Something about not being able to see the person your talking to seems to make it ok to talk to them like they just stole your lunch money and kicked your dog. It's just easy to disconnect emotions when it feels like you are just talking to a machine. Which really is what it feels like when your talking to someone on a computer or over a phone sometimes. You are physically talking to a machine, it makes it hard to realize there is a person operating that machine.
     I'm sure I've talked about this on this blog before, but I just really enjoy people. I'm sure I complain about them all the time in past retail jobs, and just in day to day life. But I think humans are the most interesting thing in the world. Consider your entire life, all of the people you know, the things you've learned, the things you've felt, the things you love and hate. Now consider that every single person in the world has a completely different image in their mind when they think of the same things. Its like our world is full of an infinite number of smaller worlds inside of every persons head, and I just think thats really neat. Even when I deal with someone who is acting like an ass, I still enjoy just thinking about how different their world is from mine.
     It's almost like this job has been training me though to stop interacting with people though. I noticed I hardly ever even text anyone anymore, I think just because I am so used to not talking to anyone all day. So if you feel like I've been MIA lately, please just keep prodding me and try to crack my post work shell. I leave work with the full intent of talking to everyone and anyone I can lay my eyes on. But then by the time I get home, I'm just tired. My post work routine for the past few days has been to take a shot, eat a pickle, call my mom and hide in my house. For that at least I'm glad I live with my boyfriend and three other guys. It gives me a built in group of people I can talk to with out having to to my pajamas off and interact like a real person.
     Usually while I'm at work I spend a lot of time planning all the things I'm going to do when I get home. But, I get home and generally none of it happens. My body and brain are just not cool with this whole 9-5 thing. By the time I get home I have no energy left and then the weekends are generally spent catching up on all the things I didn't have the energy to do.
     I have had a hard time coming to terms with multiple sclerosis fatigue in that sense. It infuriates me that sitting at a computer all day makes me so tired. I feel like I have no reason to by tired and try to proceed as normal but then my body reminds me, hey girl your exhausted. I've been reading a lot about MS fatigue lately, hoping someone on a foreign blog will have the cure for it, but I haven't found that magic pill yet. It's just something that I need to learn to except, sometimes this dumb disease just makes you tired.
     Which seems so stupid, everyone is tired. But its a special kind of tired. I have actually been brought to tears reading forums of people with MS describing their fatigue and then describing how not one person in their life understands it. But then it is so nice to be able to see that there are people out there who's little personal worlds are similar to mine.

     Oh hi Internet, it's been a while. My life the past few months has sort of been an endless blur of quitting jobs, being fired from jobs, literally being allergic to a job, sulking and finding new jobs.
     I had been working for 5 years at a customer service retail job. It wasn't the worst job, but it was by no means the best. It was stressful at times and underpaid as is any retail job. I had been wanting to leave for a while but was tipped over the edge when new management began to treat me and my chronic disease as a burden. It is extremely painful to feel unwanted for something you have no control over. 
     The other difficult part was medical benefits. I interviewed and was offered jobs at a hand full of places that sounded great, but none of them offered benefits. Not having health insurance just isn't an option for me. It made it uncomfortable having to decline job after job.

     I vividly remember the turning point when I had just started a new medication. My entire body felt like it as on fire and my throat started to itch and feel tight. I called the drug company to ask about side effects and they told me it sounded like an allergic reaction. I remember watching my sweetheart of a supervisor telling management that I needed to leave to seek medical attention, because well I don't know all signs seemed to be pointing to my throat closing, and watching the manager roll his eyes and throw his hands up in the air. I instantly decided this wasn't an environment I needed to be in. P.S clearly this seemingly allergic reaction didn't kill me, it turned out to just be normal side effects. I had a real shitty few weeks adjusting to the new medication but now its actually the most successful MS drug I've been on. I'm sure I'll do a post someday about how amazing it is to take a pill instead of a daily injection.

     The process of looking for a new job at that point was a nightmare. It became a moral dilemma of checking yes, no, or I do not wish to answer when applications asked do you have a disability. Yes I do have a disability, no I don't feel like I do and I also do not wish to answer. I legally can not check no, I don't want to say yes and checking I do not wish to answer seems the same as pressing yes.

     At this point in the blog I wrote out a few paragraphs explaining and bitching about all of the different jobs I've gone through. I decide to delete all of it. It was just a lot of unnecessary negative energy. I realized I don't need to publicly validate myself for all these jobs. But long story short I guess it was just a weird few months.

     I will say though one of the most difficult things for me at all of these new jobs was relearning how to learn. When I first started my customer service retail job, it was at the beginning of MS causing cognitive issues for me. So my learning process wasn't hindered yet. It is extremely difficult for me to catch on to new jobs and systems as quickly as I am expected and hoping to. It's extremely frustrating completely understanding something one day, and then hardly remembering it the next. Even more frustrating then that though is the reactions of my peers at work looking at me wide eyed and confused wondering how I didn't know these things yet.

     It constantly feels like I'm being talked down to because of it. I think talking down at someone is one of the most disrespectful things you can do. I'm sure a lot of times no one means any harm by it, but seriously think about the ways and words you use to speak. I consider almost every thing I say before it leaves my mouth. That may be a reason I'm so quiet, because by the time I've worded something the moment has passed. A lot of people do just have harsh voices they are unaware of, and I guess I am a little sensitive. But it has been become an extremely difficult part of working now. 

     I've finally found a job thats manageable though. It pays me enough to, you know survive and stuff. But the thought of worrying about maintaining a job in the brain of chronic disease is very much still present. I've only been at this job for about a month and still daily I have moments of "why can't my brain figure this out yet." This job also does not have health insurance, another thing that keeps be constantly worried. I am currently on a cobra plan from my original jobs health insurance, but it will end in about four years. Which I mean is great, thats a damn long time to keep insurance after you've left a job. But I know I can't stay at this job for years to come because I will eventually need to leave for a job with insurance. 

     I feel like I could go off on a pamphlet length rant right now on how tiring it is to have to revolve so many things around health insurance. But, I'll save that for another day. 

     I am very grateful for the job I do have though. Despite the weird few months, this is the best I've felt both physically and mentally in a long time. 

     I've been learning a lot about my limits lately. Sometimes if I'm feeling well, which is more times than not, I forget that I have a chronic disease. This isn't necessarily a bad thing, in fact I think its a pretty damn good thing. But it's not such a good thing when I have decided to stay out all night multiple nights in a row and forget about the physical consequences.
     I missed out a lot on my early twenties. I was diagnosed when I was 18, so it was all still pretty new. I had extreme anxiety due to the disease, and put a lot of limitations on myself. I was also sick a lot, thats when I had most of my MS flare ups. So the majority of my nights were spent at home, if netflix was around then God knows the damage I would have done.
     But lately, I have been wanting to simply enjoy myself. My anxiety is diminished, I have been doing great physically and I've just been wanting to put MS in the back of my mind. I've been staying out a lot later and more often and it sucks realizing that my body is not going to let me do that. I need sleep. My body gets very, very upset with out sleep. I get dizzy and achy, it just exacerbates a lot of MS symptoms. It's just frustrating when your body and your head aren't on the same page.
     When I was diagnosed I made a decision to stop drinking alcohol. I assumed it would mix badly with the MS, or maybe not mix well my medications. I was having a random conversation with my mom about a month ago, and the topic of why I stopped drinking came up. Upon discussion I realized that it would in fact not effect anything MS wise, I mean as long as I'm not getting plastered every night. So its been a fun month figuring out what I like to drink. The last time I drank I was 18, and I think drinking at 18 generally is just a sea of cheap beer. So it's been pretty funny being 26 years old, having my first legal drink and having to ask people to explain different drinks to me because I genuinely have no idea.
     So far the conclusions have been that I think all beer tastes the same, and its all gross. My beer loving boyfriend I'm sure is sick of explaining all the vast differences between different beers to me just for me to make a stink face after every sip. I seem to only like fruity things where you can't taste the alcohol at all, so basically I'm a girl. One thing though I've really learned about being hung over, is that it is way worse with MS. So I have definitely learned my limits in that respect.
     All in all its been a fun, and well not so fun, experiences learning how my body reacts different levels of fun having. I think it's all about finding a balance, and I think I almost have mine.

     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.