Friday, October 30, 2015

Young People, ME/CFS, and Limits

My own college Halloween (I'm Barnie, the short one in the middle!)
I led a healthy, active, normal life until I got ME/CFS at age 37, thirteen years ago. My oldest son, on the other hand, got ME/CFS two years after I did, when he was just 10 years old. That's a very young age to begin a life of chronic illness. He is 21 years old now, and he and I are both struggling with his limits.

After 13 years of illness, I am accustomed to this life defined by restrictions and limitations. I can't drink alcohol; can't eat diary, sugar, or yeast; can't stay up late; can't exercise the way I want to...the list goes on and on. I am resigned to this life ruled by limits because I know that if I stay within those limits - and take my medications and supplements at the right times every day - then I can function fairly well most of the time, especially for someone with ME/CFS. My son, though, struggles mightily with this life of limits.

After eleven years with ME/CFS (and the past nine with Lyme disease and two other tick infections, too), he is well aware that he feels better when he gets enough rest, sticks to a routine, and doesn't over-exert. Knowing that and doing it are two different things, though. I get frustrated when he does things that we both know put him at risk for a serious crash.

For instance, when he and his friends drove to Florida for spring break last year, he volunteered - volunteered! - to drive the middle-of-the-night shift, ignoring the fact that he needs a solid 10 hours of sleep a night to function the next day. I couldn't believe it when he told us that!

Last weekend, we were making our annual trip to the local pumpkin farm on Sunday morning for pumpkins and homemade donuts, and he wanted to join us. We planned to leave by 11 am (if you get there too late, they run out of donuts!), so he decided to spend the night at home so he could get up in time to go with us. He came home from work Saturday night but realized he'd forgotten something at his apartment at school, so he drove back there at about 11 pm. Next thing we knew, it was 3 am and we heard the garage door going down. The next morning (when he could barely drag himself out of bed and into the car), we said, "Why on earth did you stay out until 3 am?" He explained that when he stopped back at his apartment, a friend convinced him to go to a Halloween party, so he pulled together a quick costume and went!

Today, a similar story. He slept here last night because one of our cars is in the repair shop. He was wiped out and didn't get up until 1 pm today. As we were eating lunch (breakfast for him), I said, "Now, I know you have two Halloween parties to go to - one tonight and one tomorrow - so pace yourself, OK?" He grinned sheepishly and admitted there were actually seven Halloween parties going on this weekend! I advised him to just choose the ones that were most important to him, and he just said, "We'll see." Yeah, right, I know how this goes!

As a mother who has watched him suffer from this illness for eleven years, this drives me crazy!!

On the other hand, if I think about it for a moment, I really can't blame him. He is 21 years old and in college! When I was his age....well, let's just say I was more than a bit wild. I was a regular party girl and quite reckless. I can't imagine - in my wildest dreams - being that age and having to live within all these restrictions and limits. Unthinkable.

His is a time of life that is all about freedom, fun, and independence. A time when you have few real responsibilities, and life is all about friends, parties, and having a good time (oh, yeah, and school, too). It hurts my heart to think that he can't just be wild and free like I was, that he can't just do whatever he wants and make the most of his fleeting freedom.

So, although I worry about him constantly and often wish he'd be more careful, another part of me is rooting him on, thrilled that he is well enough (relatively speaking) to be able to go to college and live on his own and spend time with his friends. I remember all too well those dark days when he was in high school and mostly confined to the couch, missing 90 days of school his senior year. I want him to enjoy this time of life and go to the parties and laugh with his friends and stay up until 3 am...I just wish all that didn't involve such a big risk for him.

I will continue to worry about him, I'm sure, but I am also proud of him for making the best of things, for managing to have fun in spite of all his restrictions and limits, for trying his best to live a "normal" life. In truth, his life is far from normal (though that is hard for others to understand) - he eats a restricted diet (some of the time!), is on a strict regiment of medications and supplements that allow him to keep living his life, and does indeed crash if he does too much - but he is making the best of it and living his life as best he can. Although I may get frustrated with him at times, he is actually my hero.

I would love to hear from other young people (and parents, too!) - how do you find a balance between the limits inherent in this illness and living your life? How do you cope with so many restrictions at a time of life usually defined by freedom?


Samantha said...

I graduated in spring from college in New Orleans--A notorious party capital. This is similar to my personal experience, my roommates and mother would often ask me why I would do things if I knew it was going to make me sick the next day.... what was I supposed to do? Never go out? Completely exclude myself from the social sphere? Yes it made me sick, but I wouldn't have been living any sort of life without it. I, too, was bed ridden in high school and my social life withered and died within my first six months of sickness.

It's especially hard in a college environment, because you are completely immersed in a community of perfectly capable peers. Even though many of my close friends were aware of my struggles, our wider friend group and more casual acquaintances had no idea. My choices were to stay in, feel healthy, and then listen to all my roommates recount their adventures--or to attempt to fake normalcy.

The latter choice definitely had it's repercussions, but it also helped me to feel socially engaged in a way that I've otherwise been unable to experience since becoming sick. All of this can be so isolating. If taking the night driving shift for Spring Break can help bring some mental/social happiness, then perhaps it is OCCASIONALLY worth the physical sacrifice.

Sue Jackson said...

I completely understand, Samantha - I moved to New Orleans after college so I know exactly what it's like there! Your experience sounds very similar to my son's. Thank you so much for taking the time to share your experiences here. It's a tough life for anyone but especially a young person!