Well, it’s here, the summer season has finally sprung (much to the chagrin of many people who have multiple sclerosis). With this season often comes vacations, day trips, BBQs, and all sorts of social activities and responsibilities. No, this actually isn’t about the difficulties we face during the warmer tempsthat accompany this season. While I want our friends and family to understand what temperature changes can do to us, I want to talk about another issue that tends to rear its ugly head this time of year. I’m talking about the difficulties we can experience when trying to do something on back-to-back days.
The price we pay for activity
For many that suffer from multiple sclerosis, there is often a price to be paid for activity (I like to call this the “MS Tax”). The nature of this being active and then paying for it cycle is one that really defines MS for many people out there. It’s also one of the reasons that inhibit friends and family from understanding our disease. We may be able to be out and about and active one day and completely laid out the very next.
What you see, isn’t what we get
People tend to only see us when we are “looking good”, putting on that brave smile no matter what we feel like inside. They don’t see us the next day, when we may be agony, lying in bed or on a couch having trouble moving. They don’t see the overwhelming fatigue that makes simply getting up to go to the bathroom seem like an impossible journey. This dichotomy between how our bodies behave one day and the way they do the next day can be just as confounding to us too. It can mess with your head when your active one day and feeling awful the next. It can also make you never want to leave the house again. Was yesterday worth the pain I am in today? I face that question all the time.
Choosing battles
So when it comes to this time of year, where so much is going on, many of us are left in the awkward position of choosing what we do and don’t do. As you might expect, that can have a tremendous effect on relationships of every kind. Going to one friend’s party on a Friday but not your other friend’s BBQ on Saturday is certainly enough to cause a strain on friendships, no matter how understanding your friends are. Because of our bodies, we are often forced to pick and choose what we do and where we go. It’s tough to make those choices, we obviously want to do everything, we simply can’t. That’s one of the harsher truths of living with a disease like MS. It sucks.
My mind is too big for my body
I’d like to say I always plan everything out well, that I choose wisely, but even after all of these years, I still don’t. I always think I can do more. It’s like when someone orders a huge meal and they say their eyes were too big for their stomach. That’s how my mind is, my mind is too big for my body. So I always end up doing whatever comes chronologically first, thinking that this will be the time I make it through a full weekend of activities. “Sure friends, I’ll see you all tomorrow!” Nope, tomorrow comes and my body won’t move. That’s frustrating, not only for me but for my friends and family too.
Educating my circle
While trying to plan my activeness better is probably the correct solution to all of this, I find I rely more on educating, or trying to anyway, my friends and family. I explain how my body has to pay this tax, how, no matter what I say, I’m not likely to make it out the next day, and that it’s nothing personal. I remind them I want to do everything and that I will try my hardest but my body breaks down. Everything I do takes much more energy than a regular person, that’s my best way of trying to explain how I may look great one day, but be absent the next. I can still be me for a period of time, but it takes a lot out of me to do that. So I look at this article as another way of hopefully educating my friends and family (hopefully yours too). I probably won’t make it tomorrow, no matter what I said, but don’t for one minute think that I don’t want to be there.
Thanks so much for reading and always feel free to share!
Devin
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