For my MS friends who have asked for a copy of this article on MS Fatigue to share with family and friends, here it is:
PAYING the MS TAX:
It’s time for me to talk about a pretty common occurrence in my life, those times when I have to “pay the MS Tax”. That’s what I call it anyway. I’m referring to that period of time after I’ve tried to act normal, when I’ve put on my best smile (real or not), bit the bullet, and went out and actually did some sort of activity like most people do. That time when I feel like I’m paying for acting like everyone else. For me, the day after an activity is typically filled with fatigue, pain, and even confusion that necessitates me doing next to nothing. While my experiences certainly don’t reflect everyone with MS (or other chronic illnesses for that matter), I know there are many that do deal with this phenomenon.
Having to have a recovery day (or even days) has become such a necessity to me, that my wife and I have to plan for it. As you can probably surmise, if there are two things happening back to back, that means picking and choosing one over the other. Most times that’ll be whatever comes first because I will always tell myself “oh I can do it all”. I tell myself that and then the day after the first event, reality comes crashing down, I’m stuck in bed or on the couch and looking terrible because once again I’ve had to cancel at the last minute.
Even though logically I know I am going to need down time, I still tend to get this attitude that I can do everything. My wife knows better and will try to talk some sense into me but at the same time, I imagine it’s pretty hard to do that. 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 keeps repeating itself.
So what happens when it’s time for me to pay the MS Tax? As I’ve mentioned, it’s a lot of laying down, either in bed or on the couch. For me, it’s primarily that because my legs will be weak, any attempt at standing and walking is tough. Just making it to the bathroom becomes an adventure! I would happily try to sleep the day away because I am overwhelmingly fatigued. The simplest of tasks, even trying to change the channel on the TV with a remote feels like I’m trying to swim through quicksand. So sleep should be a no brainer here, except that sleep becomes difficult too. That’s because, like many others with MS, I suffer from some extreme pain. 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 you are.
While I’m home paying the MS Tax, it’s easy to feel that I’m missing out on life. The advent of social media makes that even worse because I can see the fun times being had by all. 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. 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. At times I do feel the tug of loneliness, but I do feel some solace that at least one of us is getting out there. I’d feel ten times worse knowing that my illness prevented her from enjoying life.
Like regular taxes, paying the MS Tax is now an unpleasant but unavoidable part of my life. Acknowledging it and having the right attitude about it is so very important to avoid getting depressed about it. As I said, I like to think of it as just getting ready for the next time.