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. 

Starting a New Job….with MS…

Starting a new job is never easy. You never know what to expect no matter how thorough the interview was or if you know someone who works there. Maybe you will hate your boss or find out that the only microwave for 500 people barely heats up your lunch. I’m not talking from personal experience or anything… 

Consider all of the normal new job anxieties and then add a big old dose of “I have MS”. Do you tell your boss? Your coworkers? What about the fact that it will be six months until you have ANY time off? What if you have an episode before then? What about the MRI you have scheduled next month and your many doctors appointments? It’s scary and it is not something that many of the people in your life can relate to. They will try to calm you down and talk about their experiences, but it won’t be the same because you have MS. But you already know that. 

I started a new job recently. I was so nervous that I was too nauseous to do anything the Sunday before my first day and ended up throwing up that night. I cried on the bathroom floor convinced that I would be too sick to go to my first day of work, which would really set the wrong tone for this new job. I still felt sick that entire morning, I forced myself to work, told my boss that “I recently had a procedure and the medication was making me feel a bit off” (lie), and I ended up ok. In fact, once I got comfortable, I didn’t feel nauseous at all. Coincidence? Nope. I was so anxious that I made myself sick. 

I was anxious about all of the normal things, but also anxious that I was about 6 months into being diagnosed with MS and starting a new job. At my last job, I had told my boss about my diagnosis so she knew what I was up against. She understood when I had to take days off and go to appointments. My current boss doesn’t know and isn’t really the type of boss I feel open with, so I hope she will never have to know. This adds a whole layer of pressure. At one point, a few weeks in, I told her I had a chronic illness and may have more doctor appointments than the average 23 year old. She was understanding and I decided that was good enough for me. 

I counted down until I passed the 90-day “probationary” period. After that, I could use sick time if I needed it. Those first three months were constant stress. With MS, I’ve found that every weird sensation or pain behind my eye makes me anxious. “Is it happening again? Am I going to miss work this time? Wow, I hate those steroids.” But those first three months were even worse. I really wanted to show how dedicated I was, I didn’t want to be the new girl who kept taking days off before she was even allowed to. I don’t think anybody would want that. 

I got lucky. I made it through those three months. I still don’t feel in the clear though. I probably won’t for a while. My last job I missed so much time in my first six months. I ran out of sick time. Ran out of vacation time. I had to work with my manager constantly to make it all work. I felt like a failure honestly. My coworkers never took a day off and here I was barely ever in the office. 

I think a big struggle of being young and newly diagnosed with MS is comparing yourself to others. When you are just starting a career, relationships, maybe even a family, a life, it is so difficult to add a chronic illness to the mix. It is so hard not to compare yourself to the other people your age. I have friends going out to the bar every night, traveling Europe on their own, working 70 hour weeks, moving half-way across the world from everyone and everything they know. Of course, I could do these things too. I could do them until I felt like I couldn’t anymore. There would probably be a time when I would get too tired or just too anxious. And when you are young, that is hard to think about. It takes away a lot of the impulsiveness that you are supposed to have as a twenty-something.

The conclusion is that starting a new job is always hard. It is even harder when you have MS. With time-off always being an issue and then comparing yourself to colleagues, it can be extremely stressful, and it is easy to feel like a failure. I’ve found that being as honest as you are willing to be with your managers and giving your all when you are able will show your dedication to your job and your career. Remember that you don’t have it as easy as some of the people you know, but that just makes you even stronger and better at what you do. 

Has anyone else had experiences starting a new job with MS? Or are you about to start a new job? Share in the comments!

Stay Away From My Cube

I would love to put a sign on the outside of my cubicle that reads “Compromised immune system. Do not enter if you are ill”, but that is not acceptable in the workplace. I also keep my MS to myself and, even if people did know, they probably wouldn’t know how my immune system reacts to germs. And if they did, they may not care. 

I keep forgetting that, once upon a time, I wasn’t super conscious about how my germs affected the people around me. I covered my mouth when I coughed and sneezed, washed my hands constantly, etc., but I didn’t think “oh maybe I should keep my distance”. You don’t go through life assuming everyone around you has a compromised immune system. But now, I do! 

People keep coming into my cubicle coughing, sniffling, complaining of a head cold they’ve had for three weeks. I am so scared of getting sick, because that could mean another relapse or it could mean that I won’t be able to get my scheduled infusion. But I can’t work in a bubble. I’m not allowed to work from home. And I can’t have a sign outside my cubicle that says “DO NOT ENTER”.

So happy cold and flu season everyone! We just have to do our best.

My Part-Time Job: Patient

I have been thinking a lot lately about patient advocacy lately. It is on my mind a lot — what does having a chronic illness mean for me and my career and my life as a patient?

Since my diagnosis in October 2018, I have spent many hours on the phone with insurance, infusion schedulers, and the doctor’s office trying to make it all work. I’ll be honest, some of my working hours have been spent in this way, because that’s the only time I can call. I will call during lunch break, be on hold for 30 minutes, and end up hiding away on the phone while I should be back at my desk. Early on, I started getting a sense that nobody was going to be considerate about the fact that I had a job. Insurance wouldn’t approve the infusion faster, the doctor’s office wouldn’t give me enough notice to tell my boss when the infusion was, and they didn’t mind keeping me on hold for extended periods of time. 

There were many moments where I wanted to scream through the phone “I have a job you know? I may be sick but I have a CAREER and I can’t be calling you every day and I can’t call out of work in three days because that’s how much notice you gave me before my infusion”. 

I have now accepted that this is just my life. I am 24 years old, I have only been in the “real” workforce for a year and a half, and now I have the part-time job of patient to add to my resume and workload. Do I feel like a real pain to insurance and doctors sometimes? Yeah. I hate calling constantly and asking for status updates when nothing has changed. Yet, that’s the only way to get things done.

I am so lucky to be well enough to work, I am thankful for that every day. I realize that may not last forever. Having a chronic illness can get in the way of your career in so many ways, and sometimes it’s the fact that being a patient takes away hours from your days and drains every ounce of energy you have. It isn’t easy. Having a chronic illness is never easy.

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….

Disability Awareness Month

As October comes to a close, I have been thinking a lot about Disability Awareness Month. It isn’t a well known thing. I only know about it because I work at a university with a strong disability advocacy program. But it is so important. 

Since my diagnosis with MS, I have been fortunate to not show any visible signs of the disease (yet!). I realize that my future may look very different and I may face many more obstacles than I do now. I see the MS warriors who use a cane or other mobility aid to get around. I see the MS warriors who suffer fatigue that makes it difficult to work their 9 to 5. I also see the MS warriors struggling with their mental health and all the other side effects and implications of this chronic illness. 

So this month I made a point to go about my life conscious of what is and isn’t accessible to people with disabilities. Once you start thinking in this mindset, it is shocking to realize how little accessibility there is in our everyday lives. Despite the laws that have been passed and the strong advocacy efforts of many, our world is still very inaccessible. You will see the obvious things like people parking in handicap spots without a sticker and the less obvious like the removal of curbs in a suburban neighborhood causing chaos for a blind resident. 

When you have an illness that will most likely lead to a form of disability, you start thinking about these things more, but I think it is something we should all be thinking about. We should all be considering how mental and physical disabilities affect the people around us, especially when we can’t see those disabilities right in front of us. 

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 😉

Please don’t get me sick!

Why I’m Terrified of Getting Sick

October is a tough month for me. The past two Octobers have involved emergency room visits, the last one resulting in my MS diagnosis. I’m not sure if it’s the germs floating around, the change in the weather, or simply bad luck, but I guess October is not my month. This really sucks for me because a) I love fall b) I am obsessed with Halloween and c) I have a November birthday.

So I am really afraid of getting sick. On top of all the normal reasons and the addition of having MS, I just really want to enjoy October. I’ll probably end up sick because I wrote this (see how anxious I am? HA). My entire office is sick, battling colds and fevers and everything else that their kids are bringing home from daycare. If I could hold my breath all day, I probably would. I use more hand sanitizer than is recommended. I’m eating clementines for that Vitamin C. And I am terrified.

I’m definitely more anxious about getting sick just based on my track record. I almost expect something terrible to happen this month. Maybe a cold that knocks me out for a week, or a fever that leads to a relapse that leads to legit brain damage (this sounds like exaggerating so the fact that it isn’t is so not comforting). There is so much to worry and stress about and lose sleep over. But losing sleep makes ya sick.

A lot of things are scarier when you have MS. Anytime I feel a pain behind my eye, even if it’s just from sinus pressure, I freak and do my own optic neuritis test. I role my eyes and look up down and sideways to make sure there’s no pain. I will close one eye and make sure I can still see clearly, then do the same with the other eye. Sometimes I will even press on my eyelid to see if there’s pain. I’m so lucky I have a cubicle at work, otherwise my coworkers would think I was insane.

I think a lot of us with MS get especially anxious as people start sniffling and coughing. Can you blame us? So, yeah, I probably take my temperature more than the average person and wash my hands more and think about germs more. But it’s just the cost of doing business with the multiple sclerosis monster.

Happy October!