20 September 2014

What It's Like to Have MS, or How I Learned to Stop Worrying and Love My Incurable Degenerative Brain Disease

Soon after I was diagnosed with MS, I realized that people freak out when you tell them you have an incurable degenerative brain disease. People are afraid or tentative around me when they find out I have MS, and I get it. It's weird and scary and not sexy. I think maybe I could do a better job of describing what MS is and what it's like to live with it.

MS is completely different for everyone who has it, so my experience with MS isn't the same as anyone else's. But I'll tell you what I know anyway.

Maybe you wondering what the heck MS is. MS stands for Multiple Sclerosis, which means "many scars," which refers to the scars left behind in your brain or spinal cord after an MS relapse. MS is generally accepted to be an autoimmune disease where your immune system attacks your own tissue; specifically a tissue in your nervous system (which includes your brain) called myelin. Myelin is a fatty substance that coats your neurons. You can think of it like the plastic around electrical wires. The plastic prevents the wires from shorting out, and so the plastic makes the electrical stuff work right. But if the plastic gets eaten away (by your own immune system, how stupid is that), things stop working right. Depending on where the myelin is/was, you can have different kinds of symptoms.

My particular incarnation of MS is pretty mild. Obviously - I'm a runner so it can't be that bad, right? This isn't to say that I haven't had some fucking scary and horrible times with MS, just that I get to live a pretty normal life right now. I don't know if my MS is mild because of the way I eat/don't drink alcohol/exercise/meditate/think/whatever, or if I'm just lucky. Oh wait, I have an incurable degenerative brain disease. I'm not lucky.

There are four different types of MS. I have relapsing-remitting MS (RRMS). The other three types are primary progressive, secondary progressive, and progressive relapsing. If you're going to have MS, RRMS is the best kind because you have relapses (boo) and then remissions (yay!). During a relapse, shit goes wrong. During remission you might experience no symptoms, or you might have some that linger. You might fully recover from a relapse or maybe you mostly recover but not all the way. I usually recover to like 97.36% of my previous remission state. This means I still have some remnants of the relapses I've had, but they aren't too noticeable.

If you met me on the street, you wouldn't know I have MS. I don't look or move or talk differently than anyone else. This isn't the case for everyone with MS, and it might not always be the case for me.

I've had maybe 4 or 5 significant relapses in 10 years, and lots of smaller ones. Twice I was in the hospital for about a week; the rest of the relapses were manageable at home.

Here are some of the symptoms I've had. I'll tell you about the relapse part, which is when the symptom first appeared, and then I'll talk about any related symptoms I still have.

One morning in the fall of 2011... Well okay, it was not just any morning, it was the morning of Sean's first ultra. The Vermont 50. I woke up and felt weird, in a way that I still can't explain. I just knew something was wrong. It was also way too early, like 3:30am. I had been eating terribly and just being generally stupid about self-care. I was just waking up, sitting in bed, when all of a sudden, I lost half the vision in my right eye. Right before I was supposed to drive Sean to the start of the race, in the dark, on unfamiliar mountain roads. Fortunately it didn't get any worse and I was able to be a semi-normal person that day.

Vision loss in MS is usually due to Optic Neuritis, which is a fancy way to say that your optic nerve swells up. You know, cause your immune system attacked it. Optic Neuritis is very common in MS. In fact it's often the "presenting sign" of MS, which means it's the first thing you notice or the thing that causes you to be diagnosed with MS.

After Maple was born, I had a couple of terrible relapses. It was a really scary time. I had this new baby and I was working full time and then all of a sudden I was completely unable to care for myself. At one point I could not walk, talk, count to ten, or stop throwing up. Fortunately I am better now. I had issues with speaking clearly as well as with word-finding and stuttering, and I still have some of that. It annoys me because sometimes I have to concentrate more than I think is fair to make myself understood.

Let me tell you about the time I was drunk in Vegas. I was walking around with my newborn baby strapped to my chest. My balance was way off and my right arm didn't work at all. I was trying to talk to Sean but the words were totally incomprehensible and I sounded super inebriated. This nice (not) saleslady at the Lucky store made some disparaging remarks about me and mentioned calling Child Protective Services. The thing is, I wasn't drunk. I was relapsing! That was unfortunate. I felt bad.

Balance, Dizziness, and Vertigo
Once I had a relapse where I could not gain any sense of balance. If I tried to stand up, I fell against a wall. My eyes rolled back and forth in my head and I was so dizzy that I couldn't stop throwing up. Even with a newborn baby and an awesome husband, I kind of wanted to die. That was the worst. My balance isn't great now - sometimes I come close to veering into something if I'm trying to walk through a narrow space, and I can't stand on one leg with my eyes closed. Can you?

When I was first diagnosed with MS, I had unexplainable weakness in my right leg. That went away and never came back. Nowadays I don't notice much in terms of movement problems. When it's really cold, my fingers and toes get kind of slow, but doesn't that happen to everyone? Sometimes at the end of a 5k or long run I get what I affectionately refer to as "jelly legs." When it's really bad I look like one of the poor saps in those end-of-Ironman bonk videos. It just started happened a few months ago, but I think it's going away. Fingers crossed.

During one relapse I couldn't remember how to count to ten, and when I tried to say the alphabet I would get to H and say "H, I, JAI." I couldn't remember how to say J, and I couldn't get beyond that letter. That was weird. I could still sort of have a conversation and I seemed sort of normal but there were these weird holes in my memory.

There's something called emotional lability, also known as emotional incontinence, which I like better. It basically means you cry all the time or laugh at inappropriate moments. I totally have this. Who knows if it's MS related, but I like to blame MS for everything.

When I'm in a relapse, I am excruciatingly tired. I sleep most of the time. And sometimes I have fatigue when I'm in remission. Fatigue isn't just being tired, it's more like I have to take a break from chewing my food because it's too hard. I can't lift my arms above my head. Fortunately this is not too common.

It's hard as I get older to discern between normal aging and MS symptoms. My vision is getting worse, but it's probably not MS related. I get tired when I'm training hard, but don't we all? I figure if I'm sitting around thinking about whether something is or isn't MS-related, I'm probably okay.

One of the worst things about having MS is the uncertainty of it. I never know what's going to happen or when, and how long a symptom is going to last. I don't know if I'll get to live the rest of my life with pretty mild MS, or if my MS will turn to Secondary Progressive like it does for lots of people with MS, maybe most. I am not on MS medication right now and of course I wonder if that's the stupidest thing ever. But being on those meds was no fun, and I seem to be doing fine.

But uncertainty is also one of the best things about MS. It encourages you to take care of yourself, to prioritize, to not put things off. I work full time, but most of the time I leave work at work. My family and my health come first, my running comes second, everything else comes after that. If I really want to do something, like PR in the 5k or go to Africa, I don't wait. I do it. No one knows what is going to happen in life, but uncertainty looms large in mine, and it's actually a good thing. I can't kid myself that nothing will ever change. I know better.

Sometimes I wonder why I got this disease. No one else in my family has it. Maybe I got too many Hep-B vaccinations, maybe it was those two rounds of Accutane, maybe it's because I never ate fish growing up or I lived in a cloudy place. I don't think I'll ever know for sure.

Autoimmune diseases suck, but they are also pretty fascinating. I mean, your body gets confused and decides to attack itself. Why does this happen? Is it related to environment? Genetics? Negative thoughts? Toxic window cleaning products? I could go into great depth about my new agey thoughts on this topic, about how autoimmune disease is related to capitalism and environmental destruction, but I'll spare you. See how nice I am? So nice.

Do you have any questions about MS? If you've read this far, probably not! But I'm happy to tell you anything. Ask away!


  1. Portia, you continually amaze me with your class, poise, and grace. You know my personal struggles with a related, horrible disease, and until I met you, I felt like I was trapped and limited. But getting to know you and the brightness and passion you bring to everything you do truly inspires me. I'm so grateful that we got to meet, and I miss you dearly, friend!

    1. Keely! I miss you too! Thank you for your kind words. You have so much grace too my friend. Are you doing any 5k races up this way? Check out my race schedule. :) Would love to see you!

  2. Not going to lie, I would sort of love for you to go into your new agey thoughts capitalism and environmental destruction. I think we're kindred spirits in that regard!

    This was really enlightening, and I'm sure you hear it a lot, but you're pretty amazing.

    1. Haha, I sent you a tweet about the capitalism-environment connection. I don't actually speak about it eloquently, it's just a mess of emotional garbage in my heart. I think a lot of folks are talking about that connection by now. Naomi Klein and Jerry Mander are rock stars at explaining.

      And thank you for saying I'm amazing. You are so nice. :)

  3. This is one of the best posts I've read by you! It answers so many questions I've been afraid to ask. I don't know why I was afraid! I know you're a human being, but this makes you a WONDERFUL human being in my heart. Thank you for being so open, sharing your struggles, being humorous and real, and continuing to be present in life!

  4. Thanks for sharing all of this - I had no idea about any of it.