Taking Time to Rest During an MS Relapse Isn't as Easy as It Sounds
Last updated: July 2020
When anyone, regardless of whether they have a chronic illness or not, isn’t feeling very well, what is one of the most common things people will tell them? “Get some rest,” right? It’s pretty intuitive, isn’t it? When you’re not feeling well, you simply take it easy so your body can recover. Everyone knows that! Well, that’s kind of how multiple sclerosis (MS) works, too, except that the need to rest is a much more regular thing. Part of living with MS is learning how not to overexert yourself because doing so can bring about neurological consequences very quickly and very easily. It’s also essential to learn how to take care of yourself during an actual relapse. To just rest. Sounds easy, doesn’t it?
One of many lessons from MS
One of the biggest life lessons MS has taught me over the years is that life doesn’t care about plans. It doesn’t matter how far in advance you make them or how prepared to execute them you are. At any moment, something unexpected can pop up out of the blue and cause you to have to cancel your plans. MS makes this even more true because a relapse can sometimes seem to manifest at random, regardless of good or bad timing (not that there is ever a good time to have a relapse). MS doesn’t come with a “pause life button” for you to use anytime things start getting really rough. You might find yourself thinking, “Come on, I don’t have time for this...” but MS, like life, doesn’t care about your plans and obligations.
An MS “inconvenience”
I’m just getting over a relapse as I sit here slowly typing. While it definitely was not the worst I’ve ever had, it still really did a number on me. Every day, I would wake up to a new symptom and fatigue that was getting progressively worse than it was the previous day. I’m sure you know how it goes. It quickly became painfully apparent that what I needed to do, while I waited for my neurologist’s office to get me the meds I needed, was rest. But I had so much on my plate at the time, so much that really needed to get done. I did not have time for this! But, it didn’t matter how much I had to do; MS was doing its thing regardless of what I was in the middle of.
Trying not to exacerbate an exacerbation
So, I started trying to slow things down a bit in my life and instead spend some time focusing on taking care of myself. While I’m not sure if resting directly helps you recover from a relapse, I know that NOT resting and trying to “push through” it will only slow the recovery process down or possibly make things worse. And because, again, I really did not have time for this, I knew I really had to chill.
Drained of energy
But even though I felt nauseous from the world spinning around me, my limbs felt weak, my vision was so blurry I couldn’t read anything on my phone, and I felt completely drained of all my energy, I still couldn’t rest. When I tried to lie down and sleep, all I could think about was the growing mountain of obligations that were piling up while my life had seemingly frozen in place while life for the rest of the world kept rocketing forward without me. This ultimately left me feeling guilty for being so unproductive and just trying to relax.
A probably unjustified guilt
Now, I knew I wasn’t just being lazy. I knew that “doing nothing” was probably one of the most important things I could do for myself at the time. My body needed rest. Even still, I couldn’t help feeling like a bit of a loser for not getting anything done. I just couldn’t lie down without my brain’s inner monologue immediately trying to guilt-trip me for resting. “You have that deadline for work coming up; you really should be working on that. And also, don’t forget about the bills. Oh, and the trash isn’t going to take itself out.” As I’m sure you can imagine, this was a lot less restful than it was stressful, and guess what doesn’t mix well with MS? Stress. So, by not allowing myself to get the rest I knew I needed and instead, stressing myself out over my probably unjustified guilt, I was likely only further exacerbating the situation and slowing my recovery.
Ten years with MS still haven't taught me to rest
I’ve had MS for almost ten years, but even still, I don’t find it any easier to “just rest” even though I know it’s what I need to do and why I need to do it. In fact, it may have become more difficult for me to “just rest” since my first relapse in 2010 because I’ve had so many that it kind of feels like I’m trying to sit down and watch a really long and boring movie that I’ve already seen a hundred times. There is nothing new and confusing to distract me like there was in the past because now it’s all so... familiar. All I can do is think about what I would rather be doing and what I “should” be doing instead of just resting and “watching a movie” that I’ve already seen so many times.
The problem with not having a game plan
Of course, in retrospect, knowing what I should have done in the middle of a relapse seems super obvious. But under the weight of an extraordinary level of fatigue and in the middle of a thick cog-fog, I felt like basic tasks (such as making coffee) were no more easier than solving a Rubik’s cube. So, the idea that I could sit down and develop a plan for properly dealing with a relapse while still addressing all my life obligations is a little unrealistic.
Relapse survival guide
I think what I need to do (what I should have done years ago) is write up a general strategy guide for myself that lists everything I need to do during a relapse and every single little step required to do those things. That way, when I find myself in such a situation, I won’t even have to think about it. I’ll simply need to turn to page one and start following each step. And if I realize something isn’t working out, I can make a note of it right then and there so that later, before there is a next time, I can make some adjustments to my little guide.
Building an emergency fund
Another thing that I’ve always kind of known I should do is create an “emergency fund” that I can put aside for when I find that I’m unable to work. That way, I might not stress as much about my obligations, and I might not be tormented by the guilt I feel for not getting as much done as I usually do. Then, I can focus on just resting taking care of myself as I should. I’m not suggesting that prepping and having a game plan for a relapse will solve all the problems that come with an MS attack; I’m just saying that this might help make things just a tad easier for me in the future.
Do you have a hard time resting?
So, I don’t know. Is it just me? Am I crazy? Or do you also tend to have a hard time resting during a relapse due to feeling guilty? How do you deal with feeling that way? Share your experience as well as any tips you might have in the comments below. This isn’t something I was ever really taught about when MS barged into my life, and I really wish I had been. Maybe we can help others, especially the newly diagnosed, avoid some unnecessary distress.
Do you use any of the following assistive devices?
Join the conversation