My Boyfriend’s Relationship with MS

When I found out that my weird eye pain/bluriness was probably MS, one of my first thoughts was my boyfriend. We had been dating for about four years at that point. One of those years was extremely casual, we went to college 8 hours apart and we wanted to do our own things, but we couldn’t stay away from each other. We spent all four years of college visiting each other when we could, and we were pretty serious at this point. I had recently moved to Boston and he was at school for one more semester, so we were now about 16 hours apart from one another. We were so serious that he had plans to move to Connecticut after graduation, something I never thought he would do. We are both from Connecticut, but he had fallen in love with the South during college. When we went to college, we both went very far away to get away from the small town we grew up in, so this felt like a big deal. I knew he wasn’t moving to Connecticut just for me, but he had told me that it was a part of his decision. Woah. 

So when I was going through the scary “what is wrong with me?” process, my boyfriend was two months away from graduation and very very far away from me. I thought about him almost immediately for a few reasons: 1) I wanted him to be there to comfort me and 2) I was scared that he wouldn’t want to be with me anymore. 

You heard that right. After four years and a pretty serious relationship, I was terrified that he was going to leave me. He gets mad at me whenever I bring this up now. A few months in I admitted this fear to him and he was upset, rightly so. He was upset that I had so little faith in us, in him. But anyone who has gone through the rollercoaster of emotions that I have may know that there is no rational thinking when you are first diagnosed. Was it irrational to think that he would just leave me because I was diagnosed with MS? Probably, but can you blame me?

We were both 22 when this crazy journey began. He was still in college. We hadn’t lived near each other in four years. And, frankly, I was wildly insecure about the next phase of our relationship. Add some MS to the mix and I was like “there goes my relationship!”. 

He didn’t leave me. In fact, he was my MS expert in those first few months. Whenever he couldn’t focus on studying, he started Googling. He read all about the process of getting diagnosed, the possible treatment options, and the possible hurtles I might face. Where I was afraid to Google, he sifted through all the scary stuff and gave me the facts. He supported me, and he still does. 

Don’t get me wrong, it is not easy. There are definitely days where he forgets why I don’t always feel great or why I am so tired. There are even times when he forgets that I have a doctor’s appointment. After all, he works about 60 hours a week and is still sorting out this whole “adulting” thing himself. I am now the MS expert and he does a lot less Googling, but he supports me. Even when he doesn’t know how to act or what to say or when I want his help and when I don’t, I know he’s there with me.

Lately, I’ve noticed MS creep into my relationship more and more. I’m more sensitive than I like to admit. My anxiety is worse than ever and gets in the way frequently. He gets frustrated with me. He doesn’t love that I cry at the dinner table because my mom has a virus and that means I may get a virus and that will lead to the inevitable MS spiral. It’s not his favorite thing about me. I don’t expect it to be. There is so much we will have to work through, so many issues that may come up in our relationship that wouldn’t have before.

I am not going to lie, I have definitely pulled the MS card during arguments. Those ones where I am just super insecure about something usually end in me balling asking him why he would want me and not someone normal. It’s sad to reflect on that, but it’s that subconscious feeling that I think many people with a chronic illness feel. Why choose me and all this baggage? 

So, I still get nervous that he doesn’t really know what he’s committing to. I wonder if he reads those articles about incontinence and nonexistent libido, or if he rather not think about that for now. I wonder if he realizes that there may be a time where he has to take care of me and may have a partner in life who can’t do all the things he wishes she could. My mom still accompanies me to all my appointments, but I hope he takes her place in that role someday. I hope it becomes more and more normal for us.

Unfortunately, my boyfriend has a relationship with MS because he has a relationship with me. Though I don’t view MS as my identity, I can’t ignore it. You can’t ignore something that major in a relationship. Relationships are never easy and, as usual, MS makes things harder. I am thankful every day that I have him. He has been such a crucial part of my support system. IT’S HARD THOUGH.

MS and Time Off (or lack-there-of)

As I’ve talked about before, time off is alway a tricky problem when you have any chronic illness. If you are fortunate enough to have your symptoms under control and have a care regimen that allows you to work in a traditional setting, you may struggle a lot with this topic – I know I do. It is a source of constant stress and anxiety. I feel like nobody else my age thinks so much about the number of sick days and vacation days they have. 

As you may know, I am a novice in the work force and in the MS club. My symptoms began about a year ago, only 4 months after graduating from college. At this point, I had zero time off from my job. I was working for a pretty big nonprofit in Boston with the dreaded “probationary period”. This meant that I had no sick days or vacation days until I had worked there for six months. I was only 3 months into my job when the symptoms started. I missed about a week of work in October as I went to doctor’s appointments every day, slowly working my way to a diagnosis. Then I missed another week in January as I fought through my first “episode” since the original one. This time it was brought on by a massive fever, so it was a long recovery. The steroids took me out for another day, since the withdrawal made me feel like a 90 year old with skin way too fragile to go on public transportation to the office. When you added it all up, I had used all my sick and vacation time before December, when I finished my probationary period. So my manager and I had to work through it. I worked from home a LOT, which I was lucky to be able to do. I worked extra hours when I could, and I felt extreme work guilt, to the point of crying constantly about missing work. My direct co-worker, the girl who had the exact same job description and was hired at the same time, never missed a day. In fact, she took her first day off recently and texted me to tell me about it. Work guilt is a bitch. 

When I left that job to move closer to my family and my doctors, it was time to start a new job and go through another probationary period. This one was three months for sick time and six months for vacation time. Regardless, I was forever stressed during those three months. Every tingle stressed me out. Luckily, I made it through without missing a day. Wait…no…I missed one day but it was planned! The first week of my new job I missed a whole day for my Ocrevus infusion…we can’t be perfect! 

I think that time off will always be a stressful issue in my life. I am always trying to prove myself and advance in my career. I want to be the perfect employee, but I have MS. I have many friends who take days off when they’re feeling a little off, or take the whole day when they have a quick doctor’s appointment. I feel like I can’t do that, I can’t waste what time I have. But this past year has taught me how important health, mental and physical, are to being “successful” in life. I will always put my health first when it comes down to it, but I will probably cry with work guilt the entire time. 

Am I just a clutz?

I’ve always been clumsy. My family says I’m as graceful as a bull in a china shop. It’s funny because I danced my entire childhood – ballet, tap, jazz, hip hop. Yet I still find a way to trip over the slight bump in the sidewalk and spill water all over myself consistently. I am no ballerina.

It’s weird when you have MS, you start to question everything that happens in your life. What’s that tingling in my hand? Is my foot really asleep or am I just losing feeling? Today, it was “did I just drop my entire bag down the stairs at work because I’m clumsy or because I have MS?”.

Yeah, you heard that right. My entire bag. My Bluetooth headphones bounced out of their case and down two flights. There was a fork there and a pill case here. And the noise it made in the 15 story stairwell was deafening. You’d think that I had fallen down the stairs (not a far-fetched assumption). I gathered everything as quickly as possible, only one person walked in as I was crouched over in a panic trying to clean it all up. To say the least, it was very embarrassing.

As soon as I got everything gathered and made it to my destination I started thinking “wait, was that MS? Did I lose feeling in my hand and didn’t notice? Did my brain not send the right signals to my hands? Is this my future???”

The answer with all of these things is I don’t know. That’s my reality. My anxiety has been getting the best of me these past few months. I am trying to live in the moment, appreciate the life I have while I have it. It’s hard. Everything is hard. But now I am laughing every time I think about my headphones bouncing around a stairwell! It was pretty funny….

October 10th

October 10th is just an ordinary day for most people. It is also World Mental Health Day which is so extremely important, especially for people with chronic illnesses. Plus, I’m sure October 10th is an important anniversary or a birthday for hundreds of thousands of people.

For me, October 10th is officially my “Bad Luck Day”. I wasn’t sure if I would post about this bad luck (in fear of some sort of negative mojo) but it’s too late for that now! So, here goes nothing.

One year ago today, I was in the ER with my first symptoms of MS. A year earlier, I was also at the ER on this day, many hundreds of miles away, because my university health center thought my nasty stomach bug was appendicitis. That was fun.

I really thought I was going to get away with a successful October 10th this year. Despite my superstitions, I was like “it’s just a day…chill out girl”. I went to work as normal and was doing just fine. Then, out of nowhere, my vision went haywire on me.

I was sitting at my desk, looking at an email, and I couldn’t focus on the words. I figured I’d been staring at my screen for too long so I walked away and went to my coworkers office to go over a few things. She handed me a paper and I couldn’t see the first letter of any of the words. It was this blurry spot in the peripheral of my left eye. I had never experienced only a portion of my vision going, and especially not this “blindspot”. As soon as I could get out of that office, I did. I called my mom in a panic, she picked me up, and I called my doctors.

First of all, I hate rushing out of work. I hate not being at work and doing my job, it’s the worst. So, I was immediately annoyed. I also hate being 23 and calling my mom all the time, but I do it. I was freaking out big time. This was strange and sudden and it was….October 10th.

I’m still not sure what happened. The neurologist alluded to a pseudo-flare since I have a sinus infection as well. The nuero ophthalmologist hasn’t responded to me yet. I got a bunch of blood work done. So, who knows?

All I know is that today is October 10th, officially my “Bad Luck Day”. From this point on, I am always taking October 10th off as a mental health day. It’s very appropriate considering that it is World Mental Health Day, plus I need to avoid any casualties on this day every year.

So, happy October 10th! I hope it was a wonderful day for many of you. Despite the bad, each October 10th has reminded me how many people I have in my life who support me and will drop everything for me. MS is unpredictable. I’ve made a lot of progress in this last year accepting that, but I have a long way to go.

Allergies, sinus infection, or optic neuritis?

Warning: This post will not answer the above question. If it did, my life would be so much easier. Welcome to MS.

I’m one of those MSers who suffers from optic neuritis. Shocker. The science tells us that 15 – 20% of people with MS experience optic neuritis as their first symptom. I’m one of those. Blurry vision, eye pain with movement, pressure behind the eye, sensitivity to light, etc. So when I feel any pain around my eyes I freak.

This week’s dilemma has been just that; pain with eye movement from sinus pressure…I think. My previous bouts of optic neuritis have all been “sinus pain” when they started. It’s hard to tell the difference. So I roll my eyes periodically to test for pain, cover one eye to make sure I can see out of the other clearly, think about it constantly. It’s not fun.

I have told my neurologist that the last two times I had optic neuritis it felt just like a sinus infection until the eye pain and blurriness progressed. I’ve been told that there may be a correlation, but they don’t know what it is. If you Google it (the worst thing to do about these things, but what I spend a whole lot of time doing), many studies have been done to link MS with sinus infections. Still, no conclusive answers. Are we surprised? MS be like…

Maybe it’s just allergies (mine are so bad all the time it’s just like a part of my life now), maybe it’s a sinus infection, maybe it’s optic neuritis. I have no idea at this point. I keep telling myself “there’s nothing you can do to change the outcome at this point”, but I’m still wishing on every eyelash that it isn’t optic neuritis. Or a sinus infection that leads to optic neuritis. Or literally anything that a normal 23 year old wouldn’t get. Is that too much to ask?

I’ve found that this first year with MS is a whole lot of guessing. Is that tingle in my foot because I’ve been sitting for 12 hours or is it MS? Am I dizzy because I’ve had three cups of coffee and I’m still dehydrated from being wine drunk last night or is it MS? Maybe the next 10 or 20 years will be that way too, I don’t know. For now, back to worrying and rolling my eyes constantly….for medical reasons of course 😉

Moving Home

Nobody knows that I moved home and left my first real job in Boston because I was diagnosed with MS. Okay, some people have a clue and others probably assume it. I tell most people, especially coworkers, that I didn’t see a future at my last job, that I was over the city life, and that I missed the quaintness of my Connecticut hometown. It’s true. My boyfriend conveniently moved back to Connecticut a few months before I did too, so that was an added bonus. 

Deep down, I know I did it because of my anxiety. Because I had MS in a city where nobody knew that I had MS and nobody would be there to pick me up if I (literally) fell. I established a relationship with a doctor in Boston and I told my boss (because I had missed so much work I felt like I had to), but my anxiety was through the roof. One time, my mom asked what I would do if I suddenly couldn’t move at work. Now, I don’t know if this could even happen, but it scared the shit out of me. What WOULD I do? How would I get home? Who would help me? My family was hours away. My boyfriend was even further away. My friends didn’t know about my diagnosis, and I planned to keep it that way for the time being. 

A lot of this led to a decision to move home. Many panic attacks and lonely nights being left with just my thoughts led me to move to a place where I loved my doctors and loved the people around me. It’s so cheesy, but I really do believe in the power of your support system. Plus, my new job is way better than my last one and I hated my roommate in Boston and I didn’t have a ton of friends so…it’s ok! It doesn’t really matter what made me move back home, and in reality it wasn’t just one thing that led to my move. MS has taught me that it isn’t worth it to be miserable in this life. You have to do what makes you happy, no matter what other people may or may not think. 

Is there anything that MS has pushed you to change about your life? Have you made a decision that you may not have made if you didn’t have MS?