We all know the feeling. That surge of energy, the desire to participate, to feel “normal” for a while. Whether it’s attending a family gathering, tackling a long-awaited household project, or simply enjoying a few hours out with friends, those with multiple sclerosis (MS) often seize these moments with both hands. 

But as many in our community understand all too well, this activity often comes with a significant price: the dreaded “MS tax.” 

Here is what our community members had to say about how they deal with physical and mental exhaustion after overexerting themselves.

The physical toll: more than just fatigue

This MS tax isn’t a monetary one. Rather, it’s a collection of exacerbated symptoms that can hit hard the day after – or even days after. For many in the MS community, this is a reminder that even positive experiences can lead to physical repercussions beyond just feeling tired.

“I pay my MS tax with hours of spasms. Though exhausted, I can’t lie down because the spasms are so strong that all I can do is try to stretch and walk them off, sometimes for hours. It’s a hefty price to pay for a good day.” 

“It’s a lot of lying down, either in bed or on the couch.” 

“For me, a lot of my pain gets focused in my legs and arms. It’s often a searing, burning sensation that feels like my body is on fire from the inside out. This kind of pain makes trying to relax and sleep quite difficult, no matter how tired or fatigued I am.”

A different kind of “day off”

The concept of a “recovery day” takes on a whole new meaning for those living with MS. It’s not just about resting tired muscles. It’s about allowing the body to recalibrate after the neurological system has been pushed. 

This extended recovery period can be frustrating, creating a push-pull between the desire to live fully and the body’s capacity to keep up.

“For me, ‘recovery time’ is always longer than the time it takes to break myself. One day of acting ‘normal’ probably means 1 week of recovery, ugh.” 

“MS and other chronic illnesses can be such roller coasters. You get lots of crappy lows but when you do feel good, it’s so rare that you want to take on the world and do everything possible. That leads to overdoing it, which leads to an even longer recovery time. The process then repeats itself.”

“I’ve paid the MS tax for years. I’ll think I can cook, do laundry, and errands for shopping the same day, then find out the next day, I’m too tired to do anything, especially making decisions to run my household.”

“The tax is especially high in the heat of summer. Two days out equals 2 days inside with the AC on, lying on the couch.”

Dealing with feelings of missing out

Many community members also shared their collective sense of missing out on life. Watching friends and family participate in activities without the same considerations can be emotionally challenging. The forced cancellations, the quiet evenings at home while others are out, and the realization that spontaneity is often a luxury can take a toll on one’s well-being.

“The problem I do have is feeling bad for my wife that I can’t always be there with her. As hard as it is for her, we’ve come to an agreement that I still want her to get out there and do all that she can, no matter what my condition. In a way, I feel like she is out there representing me while my body is at home recovering.”

“I know I have missed several things this summer due to the ‘day after syndrome’…” 

“Isn’t it a horrible feeling that I’m jealous of healthy people that can do something so simple such as vacuuming, grocery shopping, walking to the mailbox or even going out for a nice meal without feeling like they’re going to need to rest for hours and even days?”

Acknowledging and understanding your limits

Living well with MS involves a conscious effort to acknowledge and understand the limits that the condition imposes. This isn’t about giving up, but rather about learning to listen to your body, recognizing the early signs of fatigue or overexertion, and respecting those boundaries so that you can live your best life.

“I’m at the point in my long tenure with multiple sclerosis that I realize that this is a part of my life. I make the best of the times when I am out and try not to feel like I am missing out on others. I try to look at it as though I’m not missing out, I’m just preparing for the next time.”

“At this point in my life I do feel that when I do have that day when I feel great I will do as much as I can and enjoy it. The taxes I pay are worth that good day! I have lived with MS for 18 years, as well as fybro and RA. I have learned to enjoy the good days and make the most of them and yes, I will pay some high taxes but this is the life I was given, I have chosen to not let my diseases take it all from me. If I only get 1 good day a month I am going to make the most of it.”