A while back, I wrote a piece on what I call the “MS Tax”, that rough period of time after being active where we are paying for doing something. It seemed to really strike a chord with folks, as many with MS end up suffering after partaking in activities that most people deem completely normal. It could be the day after or even a couple days after, but I know if I’m especially active, I will eventually suffer some increased pain, fatigue, spasms, and brain fog because of it. That leads me to the aspect of this tax that I want to discuss today: the mixed emotions I get about even going out in the first place, knowing I will pay for it. It can be pretty easy to psych yourself out of being active.
MS charges a premium
The MS Tax can be pretty expensive. I recently gutted through two evenings back to back of hanging out with friends, and it was awesome. However, when it came to the third day in a row of friends wanting to meet up, my body said no. I could barely get out of bed, and once I did, I couldn’t leave the couch. Even going to the bathroom ended up in a fall, extreme burning pain in my legs, fatigue that felt like my body was encased in cement, and spasms in my right arm that made it hard to even hold a glass to drink with. I imagine the people that saw me the previous two nights, when I was out laughing and even standing a little, would have a hard time believing this without seeing it. That’s how completely different and debilitating this punishment for being active can be. I ended up spending two and a half days like this, days that were rough and led to me accomplishing pretty much nothing except existing.
Having second thoughts before going out
With such an extreme punishment for having a little fun, it’s pretty easy to be a little gun shy about doing something the next time an invitation comes along. It’s hard not to remember the pain and misery that we experienced after the previous time. I admit, it crosses my mind when I am making plans. I try not to plan anything back to back and I try to consider other things that impact my MS, like temperature, crowd size, and even the familiarity with a location. No matter how well I plan though, I know I will still have to pay for it, and that makes me want to forget doing anything altogether. There is already a lot of logistics and planning that goes on in my head, and for what? Half the time I end up having to cancel plans before they even happen anyway. So that I can eventually be lying in pain a day or two after? Seems ridiculous doesn’t it?
The fear that I won’t be able to push myself
So why would I even leave the house? Why keep pushing myself? Why not just sequester myself and live as a hermit (as I feel like I do most of the time already)? Because it’s important to live your life. It’s important to attempt to see and meet up with friends and family. Getting out of the house and making social connections is important. It’s extremely difficult at times, and we may end up paying for it, but it’s important. Finding and having fun any way that you can is important (and you don’t need to feel bad about having fun). That certainly doesn’t mean you have to always leave your house, but it does mean that you shouldn’t let fear of the pain and repercussions stop you. I’ll be honest, I always have that slight fear of when I won’t be able to do what I want to do, the fear that I won’t be able to push myself. To me, the biggest fear is not being able to pay that MS Tax, not being able to force myself to go out and interact with people.
It’s all worth it
That fear of the future is a big motivator for me. Like many, when I had my first symptoms, I woke up that way. That first day, I woke up and fell flat on my face. That’s stuck with me. That drives me. Not knowing what this disease will bring tomorrow can be scary. I choose to use that fear to push myself and most importantly, to remember that it’s all worth it while I’m in bed paying the MS Tax. What about you? Do you avoid activities because you’re worried about the consequences? Hit up the comments if you do or don’t. Remember, I look at everything I write simply as the beginning of a conversation, so let’s hear from you!