The Road Back From Relapse
"If you are going through hell, keep going" is a quote often attributed to Winston Churchill and it’s one that has particular significance to those with multiple sclerosis. A majority of those with MS suffer from a form known as relapsing-remitting MS (RRMS), which often features various "relapses", particularly early on, when they experience new or worsening symptoms. While some may have mild versions of these exacerbations, many will be severely impacted. Most will recover, to an extent, but they will be forced to work very hard to get through the hell of those events. Coming back from an MS exacerbation (relapse, attack, whatever term you like) is a lot like coming back from a major accident or injury. With RRMS, you may have to make that kind of comeback many times throughout your life.
What are exacerbations?
I’ve mentioned before that I dislike the term "relapse". I feel like it makes it seem like you can be fully recovered when it’s over and that’s not really the case. Even if you regain all your functions, even if you appear symptomless, the damage has still been done to the myelin around your nerves. It may not seem like it impacts you anymore, but that damage adds up (particularly early in the disease). People do regain function though. Eventually, they can walk again, see better again, no longer feel numb, etc. Symptoms improve and only pop up when triggered or later in the course of the disease when there is further damage.
MS relapse symptoms: Stepping into hell
Depending on the severity and duration of an exacerbation, it can feel like being transported to a living hell. I’ll use some of my own examples: Waking up one day and suddenly being unable to stand on my own two feet, my legs completely numb and essentially useless to me. Another time, I could not use the entire right side of my body, making simple tasks like eating and even wiping my own ass impossible without help (all while being in my early 20s). I once had severe vertigo for over a month, the experience was so awful that I wanted to die. I’ve had an exacerbation where my eyes were affected and my entire life became blurry. I’ve had other times where I suffered cognitively, my brain filled with fog, where I felt constantly confused and questioned what was real and what wasn’t. One day I woke up and my legs felt like they were on fire from the inside out. I also had one exacerbation that started slowly and affected my ability to work, I left work one day, and was never able to return. I could go on and on, but you get the point. Exacerbations are hell, at least they have been for me.
The mental impacts of a relapse
For many, the experience of going through some exacerbations is akin to suffering a catastrophic injury or accident. While some people may experience that once or twice in their lives, those with MS often experience it multiple times. That’s bound to have an effect on anyone who goes through it. The severity of some of my exacerbations has had a significant effect on my future, and not only from a physical standpoint. I’m fairly certain I suffer some PTSD from a few of them. Hard confession: as I wrote about that vertigo exacerbation, my body shook as I typed it, I got up and ran to the bathroom to vomit as tears streamed from my eyes. I had to take a long break before coming back to writing this. I get plagued by nightmares too, much the same way I’m sure some people who survive horrific automobile accidents do. I have a number of those experiences to draw nightmare fuel from though.
Getting over an exacerbation isn’t easy. Even if you regain the abilities you lost, you may need to work with a physical, occupational, or speech therapist to do so. You may have to work with them if your abilities don’t return too, to learn new ways to cope with the changes to your body. Whether you are permanently changed or not, the key to getting through an exacerbation is to just keep going. As that Churchill quote said, the only way through hell is to keep going. Getting past an exacerbation takes patience and it takes hope. You have to press on and remember that it will end. That even if you aren’t the same anymore once it’s over, that doesn’t mean you can’t conquer what it’s done to you. Patience and keep going, no matter what, that’s the name of the game when it comes to surviving an exacerbation. That’s how you make a comeback.
*Honestly, this isn’t my best article, and it’s because reliving some of these exacerbations has had an impact on me. I think it was important to bring up though, particularly if you are going through an exacerbation while reading this. If you are, you aren’t alone, hang in there, and keep going, it WILL pass!
Thanks so much for reading and always feel free to share! As always, would love to hear about your experiences in the comments below!
Were you misdiagnosed with something else before receiving a MS diagnosis?