My Life with MS

One thing about me is I loveeee my birthday. There’s no shying away from mentioning “oh that’s my birthday” whenever May 1 is mentioned. I make sure everyone knows its coming. It might seem obnoxious, but I really don’t care. As the 3rd of 4 kids, my birthday always felt like my one opportunity to be the center of attention. I was never the smartest sibling, the most athletic (clearly), or the most creative. I am a classic middle. Kinda just there. Never needing too much attention. Which may be why I became such a hypochondriac but that’s not relevant to this post. I am a birthday girl. 

I was excited for my 30th, because it’s a big one. I didn’t realize how much it would make me reflect. Turning 30 is a big deal. Many say it’s the best decade of your life, which I am all for. My 20s were full of life altering challenges. Bad breakups, an assault, the pandemic, a lot of loss and obviously the most life altering- my diagnosis

The past few weeks I reflected on the fact that my life is nothing like I would have expected. If you had asked me what I would be doing 10 years from now on my 20th birthday. I probably would have said married with a kid, nice house with a big yard, thriving as a teacher. By 25 I realized that was not gunna happen, nor was it what I wanted anymore. But even at 25, I never could have pictured my life now. Chronic illness is scary like that. It’s not something you picture when you imagine your future. Sure, at 25 I knew I had endometriosis, but 1 in 10 women do. I didn’t realize the impact that diagnosis would have on my quality of life. I couldn’t have imagined I would have another life changing diagnosis added to my medical chart. 

I share a lot about how MS has made my life challenging. It’s something I have to live with every single day and I have to face those challenges more than I would like. But MS has also made me more future focused. I make choices now that will benefit me in my next decade. I try not to take the small things for granted. I do not prioritize my job over my overall well being, because we should not live to work, no matter how rewarding that job might be. I try to be more grateful for the little moments that bring me joy. I have many days that I let my past experiences and challenges bring me down, but I always at least try to reframe my thinking.

My birthday this year brought me everything I could have wanted, even though it was so different than 20 year old me thought it would be. There was no huge bash, but instead a chill evening with my family and best friends. Despite spending my actual birthday in bed with crippling fatigue and endo symptoms, I enjoyed it. I had John and Winston by my side all day, got to watch my favorite shows and had my current favorite food- an açaí bowl- for lunch. I was able to get outta bed to enjoy a dinner with my boyfriend, parents, and little brother, ending with a delicious gluten free brownie sundae. When I returned to work on May 2nd I had cards on my desk from my students and an amazing drawing of Winston from a coworker. My friends got together again on Saturday to take a sip and script class, ending my “birthday week” with laughs, a glass of wine, and a craft- another one of my favorite things. 

I’m entering this new decade not where I imagined I’d be and I’m so grateful for that. I am grateful for everything I have. My boyfriend, family, Winston, kind coworkers, and the best friends. 

I’m looking forward to putting my health first this decade, and hoping for fewer life altering challenges. Im looking forward to thriving, not just surviving. Here’s to making my 30’s my best decade yet. 

2024 has not been easy. Shortly after the new year I started experiencing a new  symptom. Dysesthesia. A nerve pain that, for me, feels like a rug burn. It comes and goes in random spots on my body. One day the back of my right thigh. The next, the side of my left arm from the tip of the pinky to my elbow. While extremely irritating and uncomfortable, I can live with it. What’s harder to live with is my fatigue and migraines. I get migraines almost every day. Sometimes it’s just auras-vision changes, ear ringing. Usually they come with a headache. They make it hard to get anything done. At least once a week they incapacitate me. I sit in bed, because if I lay it hurts more, try to breathe, and contemplate how I am supposed to keep doing this. I am tired. I don’t want to be strong. I don’t want to have to “push through” everyday. I just want a break. 

It feels physically impossible to do it all. Wake up, get ready, work a full day, make dinner, go to sleep. Wake up, feel the tightness in my legs as I try to get up and move, get ready, work 4 hours then get a migraine, try to push through, go home and pass out, eat whatever is easiest, go to sleep. 

The doctors and research all say the same thing. A healthy diet and frequent exercise is the key to managing MS and inflammation. Where is the time for that? I’m barely functioning at a minimum… how do I fit in a workout and time to cook a well balanced meal?

The past few months I have been dealing with the following: increased migraines, new skin sensations, tightness in my legs causing low back pain, chronic pain in my neck from a random injury last February, frequent urination and pelvic floor pain. Dealing with the medical system has never been more difficult. “Urgent” appointments are weeks away, regular issue appointments have at least a 6 month wait. 

After an hour and a half physical last Monday, my PCP put urgent referrals into multiple specialists. My neurologist was out of the country and unable to see me until April, so I went and saw a new MS specialist on Friday. While incredibly overwhelming, it was reassuring to have someone confirm that my body is going through something right now. My symptoms are flaring and we need to get to the bottom of it. 

At the end of the day, my symptoms are typical of MS. But typical doesn’t necessarily mean they aren’t anything to worry about. The good news is that this isnt a sign the disease is progressing, and does not suggest I will necessarily become “more disabled” in the future. Instead my MS is considered more active. While completely confusing, it’s comforting to know it’s not “all in my head” (except that it is cause it’s my brain lol). I now have nystagmus in my right eye (the eye with optic nerve damage from my first relapse). Nystagmus is an unusual eye movement, like involuntary shaking. I have hyperflexia, which is the body overreacting to reflexes, indicating spasticity in my muscles. My neurologist also thinks that my endometriosis might be triggering my MS to be more active. 

So what now? Now, I go see a urogynecologist to see if I need another endo excision and a sleep specialist to rule out any sleep issues that could contribute to fatigue. Now, I try new meds. Baclofen for my spasticity. Emgality for my migraines. Provigil for fatigue. This is all on top of what I already take. I am literally a walking pharmacy. The MS specialist also suggested exercising 30 minutes every day.  Im hoping that will be easier to do if these new meds work. He also pushed focusing on the GOMBS in my diet. Greens, onions, mushrooms, beans, and seeds. So I am a walking pharmacy and eating like a bird. 

This year has been a lot. I truly feel like completely giving up. But I won’t. I’ll keep pushing. I’ll have hope that things will get better because I have so much to push through for. I remind myself that I am lucky. Things could be worse. I keep on fighting. Because what other choice do I have. 

I wrote this about a month ago but never posted. It feels too negative to share, and a bit whiny, but someone asked why I hadn’t blogged in a while. Today I decided why not. So here it is, negativity and whining galore. Hoping for a more favorable fall.  

This past June 28th marked 3 years since my MS diagnosis. The first two years I celebrated the day. I looked back on how grateful I was that my diagnosis gave me a new perspective on life. I felt lucky to still be in such a good place with my health. Lucky to celebrate another year without a relapse. 

This year I didn’t feel grateful or lucky. I felt frustrated. Angry that instead of living a normal life I’m always tired. I’m always overheating. I get overstimulated quickly. I hate spending so much money on supplements and doctors and pain management; all the things healthy people only need to remain healthy, not in hopes to regain health. 

I’m sick of my symptoms being invisible. I overthink everything I do. Every social media post. Any plan I make. I’m scared people will think I’m faking because one day I say I feel terrible but the next I’m at a concert. What people can’t see is how different attending a concert looks like for me now. No alcohol, because it exacerbates symptoms. We have to park close because by the time I walk to the stadium, I can’t see out of my right eye and I’m overheating. I haven’t been able to sit in my purchased seat, because I’m overstimulated by the crowd and my anxiety it out of control. And if my legs get too tired, I can’t sit because I won’t be able to see over the people in front of me. But people can’t actually SEE any of it. So I either look like a liar or a complainer,  not someone who is simply trying to enjoy just one thing. Because that’s all I can do, enjoy one thing that then leads to multiple days of increased fatigue that come after I try to have some fun. Say I actually get to enjoy that one thing, it will only be a positive memory if I was careful not to schedule another thing too close, because doing two things is too much. Then my body will really struggle. 

My life is different now. The girl with FOMO is staying in bed while her friends explore the new city they’re visiting. I’ve spent the better half of the last three months at home resting. This summer has been the hardest season in the past three years. I couldn’t seem to escape sickness starting in June, ended up with an infection. And then it was time for treatment, which is always hard on my body. Then I was too busy with wedding festivities to relax. And then I got Covid and next thing I knew summer was over. 

I find it hard to stay positive when I’m struggling with all of these feelings of anger and guilt over being angry. The struggle will continue, but hopefully I’ll find balance in the coming months.

The past few months have been a struggle. Between the weird Massachusetts winter weather, stress at work, hormonal issues, a triple-demic, and the holidays, it has been A LOT. 

I had COVID at the end of September for the second time. The typical respiratory concerns are not the main reason why it’s so bad for someone with MS to catch COVID. The biggest concerns are the inflammation and the neurological effects associated with the virus. Studies have shown that a COVID-19 diagnosis can cause an exacerbation of MS symptoms, and unfortunately, that is what happened to me. In October, I started to experience an increase in neurological symptoms, like dizziness and fatigue. One night, it hit me so hard out of nowhere that I seriously considered the possibility that I was drugged, even though there was a 0% chance that could have happened at that time. Sometimes with my symptoms, I try to blame them on things that aren’t MS. I like to pretend that my body is normal, because it makes it much less scary than accepting the fact that it is not, and that my MS symptoms can get worse at any moment. 

A few weeks later, my whole right side went numb. I was sitting in Starbucks with a student and a coworker and out of nowhere I couldn’t feel my right leg. It’s a complicated sensation to describe. It didn’t feel like it disappeared and it wasn’t tingling, but it felt like there was no blood flow, but there was. This example might not be a universal experience, so it may not help to describe it- but it’s similar to when you tie something too tight around one of your fingers and the top of your finger goes numb. It felt just like that. Like someone had tied a tourniquet around my upper thigh. I could still walk and move it, it just felt numb. Later that afternoon, the feeling crept up and was from my shoulder down. I asked a coworker to feel my hand because to me, it felt like it was freezing because of the numbness, but it wasn’t cold to the touch. Then a few hours later, everything went back to normal. It came and went for a few weeks, but never stuck around for longer than a few hours at a time. Thankfully my brain MRI was stable, but I still havent had the guts to schedule my spinal MRI, which would probably be more telling. I’ll do that eventually. Thankfully my neurologist is fairly confident this is an exacerbation and not a full relapse, which is reassuring. Exacerbations of symptoms suck, but it does not mean the disease is progressing. A relapse means more damage is being done.  

With my heat intolerance, the winter sucks almost as much as the summer. It’s cold outside so I layer up, then as soon as I get inside, I overheat. I can’t manage my temperature whether I’m cold or hot, so the constant change leaves my body confused and unable to adjust. It’s exhausting. The weather we’ve had this winter is probably ideal for most people. A few cold days with mostly mild temperatures. Those random warm days are the worst. Everywhere has heat on.  If I were to get too hot inside, I dont have the option of going outside to cool off, because it’s warm out there, too. It sucks. I constantly layer because in the course of a few hours, I could need a heavy sweater or a t-shirt, I always need to be prepared. So if you happen to see me wearing short sleeves while everyone else is wearing sweaters, this is why.

Then there’s my other chronic illness that is constantly on the back burner since my MS diagnosis- endometriosis. It was well managed for a while, so I had the brilliant idea to go off of hormonal birth control back in March. I may or may not have been heavily influenced by the health tik tokers saying that hormonal birth control is the root of all evil. I’m on so many medications and I always want to be on fewer, so I thought I’d give it a try. That was a big mistake. After a few months my endometriosis symptoms flared up, so I had to go back on. The hormonal roller coaster I have put my body on this year has not been pleasant. Since going back on in September I have had more migraines, bloating, stomach aches, cramping, mood swings. So throw all that onto already flaring MS symptoms and you get the absolute hell I have been putting my body through for the last several months.

My body doesn’t feel like mine, and I have had little control over how I feel every day. I try to keep positive, but it’s so frustrating. I do my best to enjoy myself when I can. I assume that to everyone else, I look like I’m living a normal life. But those close to me know that in order to go out and have a good time, I have to rest. I have to plan my days in two halves. One half for rest, the other for fun. Sometimes I’ll push, and I will go to a Bruins game or out to dinner during the work week, but I always pay for it in the long run. If I have plans on a Saturday night, I need to spend the other half of the day resting. If I want to go to brunch, better make sure I can spend the rest of the evening on the couch or in bed. It sucks. This winter has been full of mid-week slumps that leave me unable to get out of bed. If I catch a cold, it’s even harder for my body to push through. The sniffles can feel like the flu. I’m missing more work than usual, which in the end just stresses me out more.It’s a cycle I can’t seem to get myself out of. 

But life goes on. And as always, I remind myself that things could be worse. I am grateful for the times I feel good. I am grateful for my people who never make me feel like a burden. I am hopeful that a new year will bring new energy. I am focused on taking the best care of myself that I possibly can. Living with chronic illness is a balancing act, and recently the scales have been tipped out of my favor. I’m writing this in the hopes that it manifests change and that there are better days ahead.

This week, one of my coworkers said to me, “so Devin, I was just thinking…” I paused…unsure what was going to follow. She said something along the lines of, “when I met you, you told me you were  working here as a part time teaching assistant because your MS was keeping you from teaching. After a few months you moved in to a full time position, but that wasn’t permanent so I imagine it was a little less stressful. But you’re now two weeks into a full time, full responsibilities teaching position. I can imagine that means things have changed for you”. I didn’t know how to respond. 

I hadn’t really thought about it. I mean I recognized it in some ways. Of course I celebrated when I got the job, excited about getting back to doing what I love full time. But I hadn’t really processed all that that means. This month I went back to work as a full time teacher after 2 years of part time work. 2 years of trying multiple jobs in order to find a way I could work in special Ed without triggering an exacerbation of symptoms. 2 years of feeling less than, because I knew I was capable of doing so much more if I could just be healthy. 

2 years away was a LONG time. In those two years I focused on my treatment and learning how to manage this new life of chronic illness. I researched how to heal my body with food. I looked into all forms of holistic and alternative medicine. I’ve had acupuncture, went to therapy, started taking all sorts of vitamins. Ive gotten full body massages focused on my affected muscles and found a chiropractor I still see regularly. I wore a continuous glucose monitor because chronic illness can effect blood sugar. I learned how hormones can relate to symptom management. I joined the blogs, watched the documentaries and followed all the MS social media creators. 

And while I’m still learning, I have finally come to a point where my every day doesn’t revolve around MS. After two whole years of it taking up so much space, i have finally put it on the back burner. Obviously it’s still there. And I still take all the meds and vitamins and see the chiropractor and do all the things I learned. But it isn’t my whole life. My days revolve around lesson plans and dinners with friends and watching Trash Truck with my nephew. My weekends are back to being a mix of r&r and fun with friends and family instead of sleeping for hours upon hours with quick spurts of socialization before needing more sleep. 

My MS is still there. And there are still mornings I wake up and need to remind my body to push through the numbness and fatigue. And I still get migraines and end the week with way less energy than the average person. But I’m living again. And I’m feeling more like me. I still have MS. But MS does not have me. No matter how hard it tried over the last two years, I finally starting to believe that I will come out on top. 

This is something I have to remind myself a lot more lately. Brain fog has hit me hard the past month or so. I’m back in a teaching position for the first time since summer 2020. While I am loving it, it has been a lot harder than I could have imagined. I know managing my stress is critical to my disease management, but I didn’t realize that even if I don’t feel stressed or overwhelmed in the typical sense, my brain is still struggling with the additional work load. 

I had my first IEP meeting last week. And while my co workers praised my efforts and said I did a wonderful job, I got home and cried. I have always been a talker. And I would like to think that I have always had a way with words. I have run many IEP meeting seamlessly and eloquently. This time was different. Now… my brain fumbles over simple words. I find myself struggling to get a word off of the tip of my tongue. I take long pauses in sentences because I forget what I was saying. It a hard adjustment. I have to remind myself, I’m not stupid, just sick. I know the words are still there and my actual intelligence hasn’t changed… but I feel so dumb. Multiple times throughout my day I find myself apologizing for similar fumbles. I try to laugh them off or come up with an excuse, like it’s been a long day or I’m tired. It’s hard when people point it out or can’t understand what I’m saying. But I know it’s the MS. But I also know that it’s not obvious to anyone else. Which is a double edged sword. I can get along without anyone knowing there is anything actually ‘wrong’ with me, but then each time I meet someone new I wonder if they think I’m stupid, or boring, or lazy. I know these symptoms are temporary and are really just signs that my body is overwhelmed. I know that I am taking steps to heal my body and help it function as much as possible, but for the time being, it all just sucks. 

I think the most difficult part of my MS journey continues to be the fact that it is invisible. I constantly share memes or graphics on Instagram, in hopes that that people who know me will see them and think “oh yeah, Devin is struggling with this”. In my efforts to stop being such a complainer, I’m left with feeling pretty isolated. If I don’t complain, no one can see the pain and discomfort I’m going through. If I do complain… well then I’m even less fun to be around. MS has also taken away my fun side. I have to plan out everything; from dinner to birthday parties to going to the gym . Make sure I have enough time to rest before and after it. When I socialize, I can’t drink alcohol anymore. One or two drinks while winding down with friends can turn into a difficult morning after due to disrupted sleep, unbalanced nutrition and so on . Never mind actually letting loose and drinking whatever I want. If I do, the next few days will be debilitating. I have a friend getting married in a year and a half. I am already wondering what I will have to do in order to enjoy it- what IV vitamins and hydration I could use, how many days before or after any wedding events should I take so my body is prepared. There’s a little hope that this season of my life will be over by then, that I will be living in a whole new body because of all the work I’m putting in, but it’s hard to have hope. For now I prepare for the worst.

It is hard to remain optimistic when I feel like MS has ruined my life. It has changed me in ways that make me feel like I have lost the best parts of me. I feel guilty for feeling this way, because others have it so much worse, and I could have it so much worse. But for right now, I’m angry. Im frustrated. And Im defeated. I am sick and tired of planning. I don’t want to think about every piece of food or drink I put into my body, “will this trigger symptoms, is is too much sugar, am I ruining the progress I am making?”. It is all so exhausting. 

All the aside, I never like to finish a blog post on a negative note, so i’ll highlight some of the positives. I have had such great support from so many people. But specifically, these two. I have been in the gym getting stronger with Jenna, who runs Fit to Function, an adaptive CrossFit program where function meets fitness for individuals with cognitive challenges, using exercise to strengthen brain-body communication. I’m also working with Meredith, who runs Tactic Nutrition, a nutrition and lifestyle coaching program. She helps me in all areas of self care- helping me balance my nutrition, create healthy daily routines, and overall, just gives me good advice. I am very lucky to have these two women as resources to help me stay on track. It makes the difficulty of having to make all these decisions a whole lot easier. 

Being immune compromised gives you a different perspective on health. I have a health condition that can be interrupted by a tiny cold, never mind a virus that caused a global pandemic

I’ve been trying really hard not to publicly rant my opinion on our current public health crisis but after this week I can’t help but express my frustrations.

First, stop politicizing vaccines. Vaccine mandates have existed in the US for over 100 years. While I do believe we should have the choice in what we do to our own bodies, our responsibility to protect one another comes above that when there is a GLOBAL pandemic. Quick reminder that the vaccine is not just for Americans, and has been given to billions across the world, so the argument that our government is using it as some sort of control is completely bogus.

Our ICUs are being over run by unvaccinated covid cases. They are not filled with vaccinated patients with side effects. For the people who say, “if I get covid I’ll be fine”, sure. You may make it through with mild symptoms. But even those with mild symptoms can have long lasting fatigue, chest pain, heart palpitations, shortness of breath, the list goes on and on. Is that really making it through just fine?

You may be wondering why I am I especially angry this week. My mom, who is fully vaccinated, is home with covid. Due to her autoimmune disease and compromised immune system, she is more likely to catch it and have a more severe illness. We are lucky that because of her vaccine she has been able to manage her symptoms at home, but she is still very sick. Extreme fatigue, horrible cough, low oxygen levels, the whole covid 19 package. Along with the anxiety of wondering how it will effect her long term. What does this have to do with others being vaccinated? Well if more of the population was vaccinated, the virus wouldn’t have the opportunity to mutate. We wouldn’t have high numbers that make it more likely that those who are immune compromised may catch it despite being very careful.

But it’s not just that. I’m also frustrated because my dad, who needs knee surgery, has to wait months due to a nursing shortage. Nurses are quitting or having to care for covid patients instead of taking care of patients with any other medical concern. Our nurses are fed up. Because after a year of watching people die, they now have to do it all over again, but this time, with patients who have chosen not to do everything they could to protect themselves. Many who still believe they made the right choice declining the vaccine as they lay on their death bed.

So when you chose not to get the vaccine because there’s “not enough research” (billions of people walking around vaccinated is apparently not proof enough), or because you “don’t want anyone else to have any say over what you do with your body” (guess that didn’t matter when you got your mmr or hepatitis vaccines so you could attend school)…When you’re sitting there on your high horse, sharing stories of people who had minor, non life threatening reactions to the vaccine, proud of your dangerous decision…remember that you are putting others at risk. You are putting yourself before others. And you are selfish.