For the past six years I have lived with myalgic encephalomyelitis (ME). It’s a multi-system disease that affects the neurological, endocrine, immune and energy metabolism systems. Its hallmark symptom is post-exertional malaise (PEM). PEM is a reduction in functioning and a severe worsening of symptoms after even minimal exertion.
The tricky part is “minimal exertion” may change daily. What I can do just fine one day, will cause me to relapse and spend the day in bed the next. And this is where my fear comes
in — the not knowing what my triggers are.
I’ll admit I like to be in control. But in this case, I think it’s warranted, because every relapse leaves a scar. While I will recover from my relapse, I will never quite recover to the degree of “health” that I was before the relapse. So, a person needs to take these things quite seriously. This isn’t the kind of scar that one would say there is a “story of beauty” behind it.
If I knew what my triggers were I think this disease would be a lot easier to handle. I could simply choose to avoid them and I could be relapse-free. But I don’t know what they are; they are ever-changing. So, I have to make a decision before partaking in any activity. Do I chance doing something and risk a dreaded relapse? Or do I hold back, essentially put my life on pause, to decrease my odds of a relapse (note: Sometimes I have a relapse for seemingly no reason at all.)
I’ve grappled with this decision in a multitude of ways. In the beginning I had little knowledge of
PEM; my relapses seemed random. So, I just lived my life as much as I could the “old” way and suffered the consequences. This didn’t last long; it wasn’t sustainable. It caused relapse after relapse. By this point, I wanted to wrap myself up in a cocoon and do nothing that could trigger a relapse. While this won’t eliminate all my relapses, it certainly could eliminate a lot of them.
But this was not living! So, I adjusted and lived my life at a reduced pace and took what came with it, less relapses — but still, there were relapses. Along the way I learned about PEM and started learning about what some of my triggers were. Things got a little better as I was able to selectively pick and choose my activities, successfully avoiding a really good number of relapses.
Then, I swung a bit the other way. I started to convince myself, after this “better” period of living, that I really wasn’t all that sick. That I could do much, much more. And so I did. And I paid a heavy price. I relapsed, and I relapsed, and today I still pay the price for these relapses. The scars I created live with me still.
I wanted to jump right back into that safe cocoon. But then, what kind of life would that be? There could be a lot of experiences I’d be missing out on where I could do just fine, be relapse-free, and for a little bit, just be fully me. Oh…what a dream that would be. On the other hand, if I don’t make this choice, if I don’t choose to have some semblance of a life, then ME has won – it’s taken my heart and soul. On the flip side, hauntingly, there’s that very real fear of a “forever scar.”
What was left to try? The middle ground. I try to do what I can to avoid relapses (there are no guarantees here), but yet I also very selectively choose where I am going to spend my precious energy. It’s a bit of a gamble, to be honest, but I feel like this is a place that I’m going to try to live in for a while.
I know that it will cause me disappointment often, leaving me still wanting to do things that I can’t or won’t do. And I know it may cause my loved ones to be disappointed by my failed appearances. I can only hope they understand that I’m just as disappointed.
At some point though, I’m going to have to learn to move past this disappointment because that’s not a place I want to live. I want to live in the land of acceptance. I thought I was there, but I realized that I was simply faking myself out. It was a reality check – as real as every day has been – apparently it still wasn’t quite as real for me as I needed it to be.
However, it’s real now – I finally feel like I’m on the path of acceptance and I just have to trust that my loved ones will come along with me on this wild ride and accept it as well. Because I choose to live a life of the best of the best experiences, and acceptingly letting go of the rest.
I choose to live, but selectively live, despite my chronic illness.