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Bad days are okay with MS

By Matt Cavallo

Multiple sclerosis by and large is an invisible illness. Especially at the beginning when you’re in remission from your MS symptoms. You might get to a point, however, when you are in remission and you and those around may even forget you have MS. Then all of a sudden, you have a bad day and the thoughts and feelings from your last MS exacerbation coming rushing back. Then, just like that, the bad day is gone and you’re back to feeling great again.

When you have a bad day or two with MS, it could be a pseudoexacerbation. A pseudoexacerbation is a temporary flare up of MS symptoms usually brought on by some outside factor. A common reason people living with MS experience pseudoexacerbations is because of heat. Stress could be another trigger. Whatever the trigger, these pseudoexacerbations usually last a day or two at the most. My neurologist gave me a rule of thumb for pseudoexacerbations. If the symptoms last more than two days, give him a call. I would also note that this differs for everyone, so if you are experiencing symptoms and you think you need to be seen immediately, then make sure you call your neurologist or head to the emergency room. 

The thing about having a bad day is it is a reminder that while you are in remission, you do still have MS. It is a wake-up call that in times of remission you should be doing everything in your power to stay in remission. This includes following your neurologist’s orders, staying on your MS treatments, getting MRIs and labs as ordered, and making healthy decisions on nutrition and exercise. Even when you do all that, you can still have a bad day.

I notice when I have a bad day, it affects the people around me. My spouse is always going to worry if she senses I am a bit off. We have been fighting MS together for 19 years, so she knows when I am more symptomatic than not. But for those of you who are new to MS, it takes extra communication with your partner, family, and friends to explain that a bad day is okay and can happen with MS. 

Don’t let the bad days define you. Even if you are not in a pseudoexacerbation, maybe you have lingering effects from a previous relapse. Maybe a prior MS relapse affects your cognition and because of a cognitive lapse, you forgot to do something and it got you in trouble either at home or work. I know I am extra hard on myself in these situations. I try to help by keeping lists and checking them twice, but still I have cognitive challenges left over from a major relapse

The bad days that are the worst are when your MS gets in the way of you doing something that you wanted to or were responsible for doing. What you need to know in this situation is that it is okay to tell the person that is relying on you that you are having challenges related to MS. The worst thing to do is make up a different excuse because then it seems like you are trying to avoid the person or the situation when in reality, it was just a bad day caused by MS. 

The only way to build understanding with others is to communicate. When you are in remission, MS is hard for people to see. People can empathize with a cast on a broken arm, because when they see the cast they can imagine how it would feel to be in that position. People can’t see pins and needles in your arm, so they don’t have a visual reference to empathize from. Communicating how you are feeling, and how your MS is affecting you is the only way to help others understand your bad day with MS.