My journey through school has been a long and strange one since being diagnosed. I never had any trouble with classes in high school, but college turned into a whole other ball game. I was diagnosed with MS when I was 18 during my senior year of high school. One of my diagnosing symptoms was that by the time I got home, I couldn't remember a lot of what teachers had said. At the point, I didn't realize that MS could cause cognitive issues and was lost on what the hell was going on with my brain.
     I don't talk a lot about what it was being diagnosed in high school. In some cases I feel like it was the perfect time for it to happen. When you're 18, your invincible. No 18 year old wants to think about chronic diseases let alone believe that they could actually effect them. It was kind of just this weird thing that was happening to me. I didn't take the diagnosing process to seriously, though that was I'm sure nothing more than a coping mechanism. I almost completely distracted myself from the process. I just had to see a few doctors every once in a while, other than that I had completely detached myself from it.
     But then it was real, and this the part that I wish came at a different point in my life. Either when I was much younger or much older, just not then. It was a really self deprecating and accusatory time in my life. I thought almost everyday about what I could have done differently that would have prevented me from getting MS. Maybe if I had never smoked pot or never drank it wouldn't have triggered whatever started this, or maybe this was happening because I was recovering from an eating disorder and that must have been what messed up the chemistry in my brain. It just didn't seem like a random thing, this was personal and I didn't know what I had done to deserve it.
     I was pissed, this was my senior year, this was supposed to be fun. I remember once I was sitting in Engish class and started having a panic attack, because I was I'm sure probably thinking how it was my fault, and I just left. Didn't say a word just got up, grabbed my things and left. My school had a lot of on campus police officers and a guard in the front of the parking lot to make sure no one was leaving that shouldn't be, I don't remember if that guard was there or if I even looked. I just got in my car and drove, I drove in circles until it was the time I should be coming home from school. This eventually became a regular occurrence.
     I skipped a lot of class, and no one ever questioned it. Teachers had seen the doctors notes and knew what was going on. They either thought I was in doctors appointments or was sick or God, they were just giving me a break. I felt like if I had to deal with this crap, I was going to milk it. I do remember though having just one class that I would ever feel like going to. It was the class for my school news paper. It was only an hour long, which in the scheme of a day is nothing, but I remember just always looking forward to it. It was an hour that I just didn't have to think about it, it was an hour for whatever understood reason no one asked me about it. I remember the teacher being the only one I had I had who wouldn't treat me like someone outside of my diagnoing process. The only one who would genuinely ask me about class work without expecting the response of "I can't do it because I'm sick." It was just a very accepting space, and I don't think I ever thanked him for that.
     Most kids were skipping school and smoking or going to the beach, but all I was doing was driving in circles and hanging out in parks. A few times a week I would leave school, drive in circles for an hour until my friend was awake, then I would pick him up and we would go and sit in parks. For hours, just sit in parks. It was exactly what I needed. I was grasping at any opportunity to not have to talk about it. I felt really jipped at this point, I was throwing up and sick all of prom night (and not for the fun reason), I missed my high school graduation, I missed being excited to go away to college, but I didn't let that stop me from going.
     I was thrilled to be going away to college, looking forward to being around people who wouldn't ask me how I felt all the time, but it didn't go as I planned. When I got to college it was like someone else had taken over my brain. I was studying in the same ways I always had, yet for the first time in my life, I was failing classes. I began to slump into a deep depression and had a difficult time coming to terms with these new cognitive issues. I stopped going to classes, it began to seem pointless to show up. I started having horrible panic attacks that would make studying even more impossible. I spent almost the entire year held up in my dorm room, unable to get my head around anything. As expected, I failed every class I took that year, and decided I needed to come home.
     The next year I decided to continue taking a full load of classes, but was going to take them all online. I had still made no changes to my learning style and expected things to go smoothly. Well, they didn't. I would read a paragraph from a text book and instantly have no recollection of what I just read. I couldn't keep an attention span long enough to watch a lecture and things started to feel impossible again. This year did not go much better than the last and I began to think that college was just not going to be a possibility.
     I took a semester off to just give myself a break and figure out what I really wanted to do. I had always intended on graduating from college and had no idea it would become such a disaster. It was then I really took a step back and figured out how I needed to do things. I started taking just a few classes at a time, I had learned that a full course load was just not an option for me. I slowly got through my AA by the time I was 25. Most people would not be that proud of not finishing their AA until they were in their mid twenties and at first I as embarrassed, but I was damn proud of myself. Getting that far in my education was one of the hardest things I have done. My mom framed my diploma and people have thought it's a joke to get such an insignificant thing framed. But I worked my ass of for that, and I don't care how insignificant it seems, I am proud.
     At this point with my AA finished, I have taken on the challenge of finishing my English degree. I am back to taking classes online because that's just what works best for me. I don't need to remember everything someone said to me in a classroom hours before, if I forgot anything it's still all there on the computer. I am still only taking a class or two at a time, I'm not taking any right now because I haven't been able to figure out to balance my current job with school. But, I'm not embarrassed by that. Maybe I wont finish for a few years and there is nothing wrong with that. I don't think there is anything embarrassing about wanting an education. It doesn't matter if you are 30 in a classroom full of 18 year old, there's no age limit on an education.

     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.