As per usual I haven't posted on here in a while, which means everything has been going fairly well in my world of MS. Normally I post here when I am tired of explaining what is going on with me and it gives me a way of just telling everyone at once. But things have been good. I got married a few months ago and have been wanting to write about how the whole wedding planning process went while also dealing with a chronic disease. I have the post half organized in my head but haven't been able to actually sit down and write it. Which leads me to what I wanted to talk about today, the complete decline in my ability to pay attention and concentrate on anything.
     I talk often and openly about how multiple sclerosis affects me physically but I don't get into it too much with many people about how things have been going mentally. Within the past few years I have gotten very vocal about the depression and anxiety that I deal with had due to MS, and that is something I am not ashamed off in the least. But some of the newer mental issues I have been having are making me feel, well, like an idiot. So I haven't been talking about it much. I have struggled for a long time with my memory declining but have recently been also dealing with a lot of mental exhaustion and inability to stay concentrated on almost anything.
     Within the past few months I can describe my state of mind as nothing but "exhausted Virgo." I still want everything to be organized, on time, and just how I want it. But I mentally just can not get myself to do it, which is torture by the way. I can stare at a pile of laundry in a messy bedroom and its not even as though I am too physically tired to deal with it, but that mentally I can't handle having to just concentrate on it. I normally am a rock star at making lists of things that I need to get done (though admittedly better at making the lists than actually preforming the duties), but lately I can't even get myself to sit and think of what needs to be done.
     Aside from my inability to keep a clean apartment, it has definitely started to effect me in my professional and personal life as well. My job essentially entails me sitting on the phone and computer for 8 hours, which I know is a very normal job requirement. But lately I feel like I sit down in the morning, the day flies by, and I didn't get one thing done. I have been meeting my requirements but it has become an agonizing process where it takes me a full hour to get one task done. Brief moments of concentration surrounded by large gaps of spacing out and losing my train of thought. I have found that coffee really does nothing now but give my mind more energy to bounce around rather than the energy to focus. It has absolutely been bringing my mood down at work suddenly not being able to preform as well as I was a few months ago.
     In terms of effecting my personal life, I have definitely been having difficulty concentrating on conversations I am having and following back up with people who have left me messages or texted. Often times I will see someone has texted me, begin to text them back, then find myself moments later doing something else on my phone without finishing my sentence or pressing send. I find myself also often drifting off during conversations and when I finally am able to bring myself back down having no idea what anyone is talking about. This seems to happen more so in groups of people rather than talking to someone one on one.
     There have been a few times now as well where I am hanging out with friends and just can't get a grip on what we are doing and it just makes me feel dumb. A few weeks ago I was at a brewery with some friends playing a board game. The rules were explained to me countless times and it wasn't that I didn't understand, I just couldn't even focus on the rules being explained to me. This also made me feel like a complete idiot. You can only ask someone to explain something to you again so many times before you just give up.
     I also haven't been able to focus on doing things for myself that I usually enjoy doing. I have been reading the same book for months now, I just can't get through it. I get distracted every few sentences, then have to reread those same few sentences again because I forgot what they said. Even watching T.V lately has been a chore, its the same issue as reading where my wind just wanders away and once it comes back I am completely lost.
     Now I am not sharing any of this for sympathy, please I do not need anyone feeling bad for me. I more so just wanted to let people know what is going on so they understand. I'm not purposely ignoring your texts or not listening when you talk to me, my brain just has had other plans lately. I have been trying all sorts of things recently to try to get my focus together. The other day I started to try meditation, it uh did not go well. I was doing a guided meditation where I was being instructed to do nothing for a few minutes but concentrate on my breath. Trying to focus on nothing gave me so much anxiety, it was like my mind couldn't even compute how to not be racing and had a meltdown. So if anyone has any suggestions on things I could be trying I would so appreciate it.
     But moral of the story, I'm fine just having a little hiccup lately. I'm not trying to ignore you and as soon as my brain starts cooperating, I will give you all the attention in the world. Pinky promise.

     Living with multiple sclerosis I have had to deal with a lot of anticipation and waiting. Two things I am not particularly good at handling. After every blood test and MRI there is always a few weeks of waiting to hear the results. In these few weeks I usually am very good at convincing myself that the results will be horrible. More often then not the results come back fine and there has been no progression of the disease, but there have definitely been times where they do come back with bad news.
     A few months ago I had a routine MRI to check if my new medication was working. Usually they will just give me a call and say everything looks good and they will see me in six months for my usual checkup appointment. This time however when they called they told me they needed me to come into the office within the week. So naturally my mind went wild. I assumed my medication was not working and I would have to go on a new medication hunt. I have been on five different medications so far and the process of finding out that one isn't working anymore and having to debate side effects to pick a new one is truly a draining process.
     So I arrive at my appointment and they put me through the ringer of my usual multiple sclerosis checkup. Checking my eyes, strength and the other 10 minutes of poking and prodding we usually do. Then my neurologist tells me that my medication is working and there has been no progression of any lesions in my brain. This is all great news but I begin to wonder why they needed me to come in to tell me this. Then he begins to say that they did find something else on the MRI. The next thing I hear is brain tumor and my mind instantly just went blank. I hardly comprehended anything he said after that.  Luckily I had my fiancé with me who was able to explain everything he said after we left.
     They had found a small brain tumor on my pituitary gland and needed me to do another MRI to take another look at it. My neurologist did mention that there was a chance that it was not there and the MRI could have picked up something else but I didn't want to get that hope in my head. Now cue the almost month long journey of me in a constant state of panic waiting to find out if the tumor was actually there. I could not even say the word tumor and just kept referring to the whole thing as "that brain thing." This turned into a fairly dark time for me. I was beyond upset that not only do I have to deal with having multiple sclerosis but now I also have deal with a new unrelated medical issue of a possible brain tumor. It just felt so unfair that I had to now deal with both. I did find a bit of humor in it though that multiple sclerosis has created lesion in my brain which are essentially holes and now instead of a hole there was something extra growing on my brain. 
     Right off the bat I was not able to get the MRI for a few weeks because there were no other appointments available. This of course upset me because it was just giving me more time to sit and stew on the fact that this was happening. So the night before my MRI comes along and I am nervous as all hell but excited to finally get it over with. I was out to dinner with a friend and get a call from the MRI office. The MRI machine broke and they now have to reschedule my appointment in two weeks. This almost threw me over the edge that I now have to wait and worry for another few weeks. But none the less I dragged myself through it and finally got the MRI done.
     I now had my follow up appointment scheduled with my neurologist to finally find out what is happening inside my brain. The day before my appointment I get a call from the office. The doctor is not in town this week, we made a mistake scheduling your appointment and you cant come in for another week. The rescheduled MRI appointment nudged me closer to the edge but this appointment having to be rescheduled as well pushed me over it. The next week was filled with a lot of crying, no sleep and constant panic. I was also upset that during all this time I am trying to plan a wedding and was so pissed that I was being taken away from what should a happy time.
     My neurology appointment finally comes along and I got the unfortunate news that the tumor is indeed there. The good news is that it is more than likely benign and is very small, as I have been saying "it's just a crumb." I am now in the process of having more testing done to figure out what we have to do. I am needing to see an endocrinologist for blood tests to find out if the tumor is excreting hormones and a neuro-ophthalmologist because of the position of the tumor there is a chance it could be effecting my vision. If either of these things are happening then the tumor would need to be removed. I met with a neurosurgeon who explained the brain surgery if that if this was something we needed to do. Which was terrifying to hear. But if neither of these tests come back positive then the tumor will just be something that needs to be monitored.
     I already routinely have MRIs done every 6 months or so which will make it fairly easy to monitor since my brain is already being looked at so regularly. So I am now in the process of scheduling appointments with these new doctors and having more testing done. At this point I am more so annoyed than scared. I already see so many doctors and do not want to add any more. I am thankful I have gotten to a point where I have accepted what is happening and just want to plow through these next appointments. I am also incredibly thankful for my fiancé, family and the few friends I opened up to when I was in the middle of this journey. I don't like talking about my medical problems a lot because it makes me feel like a burden but I am so happy I am surrounded by people who constantly make me feel otherwise. This blog has also been amazingly cathartic and there is a great relief in just putting my journey into the universe. I will keep everyone updated as I continue down this adventure, breathing, communicating and pushing through.

     I can’t believe it’s been over a year since I last posted here. A few months ago I wrote a long post talking about some of the upsides of having a chronic disease and how it’s positively changed my outlook on life.  The day after I finished it I opened it back up and started to edit it. I accidentally deleted the whole thing, couldn’t recover anything, got really mad, didn’t rewrite it and well here we are.
     I haven’t had the heart to start rewriting it because just a few weeks after that happened I had a multiple sclerosis relapse that I am yet to fully recover from and I haven’t been feeling quit as positive about my outlook on having a chronic disease. 
     This explanation is going to be a long one that I think I’m writing more for myself than for anyone else to read so please bear with me if you do read all of this.

                                                   This all started about 6 months ago. 


     I have a long history dealing with anxiety and depression, I had been relatively anxiety free for a few years and had been off of antidepressants for the past two years. Out of no where I started getting strange out of the blue anxiety and did not want to let it lead back to the constant anxiety I used to deal with. I wanted to nip this in the butt quickly and went to a random doctor I had never seen before and asked them to put me back on Prozac. They agreed to give it to me and I started it right away. Now the first time I started Prozac was so long ago I don’t remember the initial side effects, but man I don’t think they were as bad as they were this time. After just a day of taking it I started having almost 24/7 panic attacks that continued for a week. I couldn’t take it anymore and had to stop taking it. I also learned to maybe not go to random doctors I don’t know and convince they to give me medicine.
     This is where the multiple sclerosis nonsense starts happening. Sometimes when I get stressed for long periods of time weird things just happen to my body. Something that often happens is I lose feeling in one of my feet, usually my right foot. So as predicted, that’s what happened. Now normally this clears up after a few days and I have a day or two of minor discomfort as the feeling starts to come back. Oh boy, not this time. This time my foot stayed numbed for what I think was weeks and when the feeling started coming back the pain was in a whole different ball game.
     I dealt with the horrible pain for days before deciding to contact my neurologist. By horrible pain I mean waking up in tears daily from how badly it hurt. I don’t want to get into details of what happened with my doctor because honestly it’s not worth it, but essentially after a few days of calling and being ignored by their office I was eventually told they couldn’t see or help me despite me crying on the phone for help. After they told me this, my boyfriend (who has been an absolute loving and amazing saint through all of this. Really words can’t express how thankful I am for him) took me to the emergency room in hope of some finding some answers. 
     They ending up deciding hop me up on pain killers and admit me for testing. After an MRI showed a new lesion on my brain they kept me in the hospital for five days to administer two daily doses of intravenous steroids. This was a super boring five days but the pain and the numbness in my feet slowly started to disappear. I couldn’t wait to get home.
     The happiness of being home quickly wore off within an hour of getting there however. My mom picked me up from the hospital and brought me home to my apartment. The first thing I wanted to do was shower. I had ordered a shower handle to stick to the shower wall to help steady myself since the feeling in my feet was still a bit off. I tried for five minutes to attach it to the wall and the moment I gave up in defeat, I just lost it. My mom was waiting for me in the living room and I hobbled down the stairs as best I could bawling my eyes out to come find her.
     My entire body ached (I’m sure from laying still for five days), I was furious about how long this healing process was taking and I was just completely physically and mentally exhausted. I had hardly slept during the hospital stay out of the anxiety of hating being in the hospital and also the annoyance of a nurse, who I know was just doing her job, coming into the room every few hours in the middle of the night to poke and prod at me. I calmed down eventually and was thrilled to finally sleep in my own bed.
     The next day though started a whole other nightmare. While I was in the hospital I was never alone. My amazing parents, boyfriend and friends were always visiting me and took turns spending the night with me. I took two days off work when I left the hospital and it was my first time being completely alone. I thought I would enjoy finally having some alone time but damn did my brain have other ideas.
     I fell into a horribly deep depression, I honestly don’t even feel comfortable saying how deeply it ran. But it made me terrified of being alone. I was at the time living with my boyfriend and a roommate, so between the two of them there weren't huge gaps of time I would be alone at the apartment. But during those short gaps, or god forbid long gaps, I was just frozen. I really don’t even know how to describe what would happen, but it was awful.
     After a few days or weeks the pain in my feet started coming back. We did a follow up MRI which showed no further lesions, which was great news to hear, but that news did not stop the pain. That’s when the great medicine hunt of 2018 began. It was a few months worth of trial and error as my neurologist, who was just great, tried to find a medication to help with the nerve pain. This was an extremely difficult process for me. Each medication would take a few weeks to fully kick in, so I would often have to wait in pain for a few weeks only to find the medication wasn’t going to work for me. 
     But eventually we cracked the case and everything started to fall together. We finally found a  combination of medications that have now nearly eliminated the nerve pain I was feeling in my feet. I was put on Lyrica for the nerve pain and Cymbalta as an antidepressant. Cymbalta actually also helps with nerve pain and the combination of the two have been amazing for me both physically and mentally. Speaking of mentally, I started seeing a psychologist and a psychiatrist and both have been amazing. I was so hesitant to start another antidepressant after the nightmare I had with the Prozac previously. But the Cymbalta had no side effects and I think it has really helped with my anxiety.     
     I know I have said it before and I’ll say it again, but I think everyone should see a therapist at least once in their life. It’s just such a great relief to speak to an objective third party about your life and thoughts. I don’t usually like to talk a lot about being sick because I don’t like to feel like a burden to anyone. I know this is entirely in my head and no one is being burdened by me talking about it but it is still difficult for me. It has just been really great being able to dump all of my “medical baggage” on someone guilt free. 
     I have gone through phases in my life where every five or so years I feel the need to see a therapist. It is usually a long battle of finding one who first accepts my insurance and also is someone that I like. I think it’s such a waste of time to continue seeing someone who you just don’t connect with or feel comfortable with. As frustrating as it can be, the hunt for a therapist is always worth it to me, I don’t think that’s something you should ever just settle with. I got lucky this time around though and the first therapist I saw was right off the bat someone I really connected with. I still have some things to work on but I think I have finally found the perfect combination of medication and therapy for my anxiety and depression. 
     So, there is a happy ending to this story. Things are looking up for me both physically and medically. There have been a few speed bumps but damn it, I’m getting there. 

Oh and I’m getting married.

     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.

     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. 

  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.