Not Being Heard

I have been writing about my many experiences with multiple sclerosis (MS) for years, and one thing people have told me from time to time is, “This is exactly how I feel! I’m sharing this with my family! You’ve put what I’m experiencing into words!” Many people with MS have a hard time describing what they’re experiencing to loved ones which is totally understandable because it’s definitely not easy to translate the chaos MS can cause into words that people can easily understand. In fact, many times, I struggle to put what I’m experiencing into words that make sense even to me, and I’m the one actually feeling what I feel! So how could I expect someone else to get it? It’s incredibly frustrating to not be able to explain to someone how MS is affecting you and even worse is when you start to feel like people just think you’re making stuff up, you’re crazy, or you’re just overexaggerating things that everyone deals with.

Trying to explain MS symptoms

When I was little, I used to have this nightmare about, let’s call it a monster, that was trying to get me. I would be in a room alone with it, and the door would be open, allowing me to hear everyone talking in the next room down the hall. I would yell and cry for help because the monster was right there creeping closer and closer towards me. The thing was, despite me shouting at the top of my lungs, no sound would come out. No one could hear my cries for help. No one could hear me. The feeling of helplessness and of no one being able to hear me that consumed me during this dream? That’s the feeling I get when I’m trying to explain an MS symptom to someone, but I just can’t seem to make them understand what I’m dealing with. From my perspective, what I’m experiencing seems super obvious, but no matter how I try to describe it, I don’t feel heard. They don’t get it. They don’t hear me.

Sick and Tired of Being Sick and Tired

As I write this, we are in the midst of some warm days, temps in the 80’s with high humidity. You know, the exact kind of conditions that can make having Multiple Sclerosis a living hell. There are plenty of articles out there about the effects of temperature on those with MS, so that’s not really what I’m discussing here. In fact, temperature change is just one of many triggers that can adversely affect those with this disease. Rather, I want to talk about one of the net results of days like this, namely the frustration it causes. When I have a string of rough days, whether it be because of heat, or stress, or any number of situations that can worsen my symptoms, I get absolutely fed up! There are many times where I put on a brave face and carry on like nothing is all that bad, but the reality is that I am sick and tired of being sick and tired.

Not to complain, but…

If you are at all like me, then you likely hate the idea of people thinking you are complaining. After all, everyone has something to complain about and no one is as special as they likely perceive themselves. I certainly come from an ethic of “just put your head down and carry on”. It’s a feeling that I constantly battle when trying to write about this disease. The last thing I ever want is for people to think that I’m complaining. At the same time though, I hope that pieces that I write allow others to say, even if just to themselves, “OK, this guy understands, he has the same problems”. I hope that reading what I write helps assuage the b*tching that others desperately want to, but can’t, do. So please allow me to take off my happy face for a few moments and indulge in some frustration.

Failure to Communicate

The Captain in Cool Hand Luke famously said, “What we’ve got here is a failure to communicate.” Lately, I feel like that quote has taken on new meaning in my life with MS. I’ve actually sent videos of it to friends as I reach out to them after a long period of time. I’ve gotten so incredibly bad at not only communicating with people but keeping those lines of communication going. When I finally get back to friends (and family), I like to emphasize the end of the Captain’s quote too, “I don’t like it any more than you, men.” While the circumstances differ than they did in the movie, it’s a fun way for me to admit that I’ve become terrible at keeping in touch and that it isn’t at all intentional.

Brain fog and memory problems

Maybe I’m just a bad person and that’s why I can’t seem to get back to people, but I don’t really think that’s all there is to it. Rather, I have some MS symptoms that plague me and make it much more difficult to maintain communication with friends and family. One of the prime symptoms that causes me problems is that of cognitive dysfunction. People love to use the term brain fog, but it’s so much more than that. Yes, I get foggy, but I also have a tremendous amount of memory problems. Making lists and reminders is absolutely critical to me. If something comes along and distracts me from that, then it can be hopeless for me to get back to someone. I may even think of the person, may even think about how it’d be nice to talk to them, but my mixed up brain may not associate that with actually reaching out and doing it. That’s a tough thing to understand unless you’ve actually gone through it, but it’s a very real issue.

What I Really Mean When I Say ‘I’m Tired’

I was talking to a friend last night, and when she asked me how I was, I answered with my usual reply; “I’m good, just really tired.” It made me realize how often I say that. I mean, it’s my usual reply for when anyone asks me how I’m doing. It’s my everyday life, this whole being tired thing. It’s become something I say without even thinking, because it’s just always looming there in the back of my mind. It’s not a matter of lack of sleep, laziness or anything of that sort. I try to do everything in my power to stay ahead of it, but one false move and it takes me down. HARD. While reading the other night, I came across this quote, and it explained the fatigue so accurately for me; “The only thing she consistently felt was the exhaustion. It was like a weight in the center of her bones, pulling down on her. The heaviness consumed her.”

Fatigue has been my biggest demon

Fatigue has been my biggest demon since being diagnosed in 2004. And, one of the most difficult things for me to explain to others is my level of fatigue. I know others relate to this miserable feeling, and I understand the frustration of telling someone you’re exhausted. I feel my friends and loved ones do their best to understand, but its not one of those things you can just easily explain. Most days when people ask how I feel, I want to just blurt out, “Oh I feel like I’ve been hit by a dump truck, have the worst hangover of my life, and have the flu. And all of those things are simultaneously fighting against each other, making my mind and body feel like a complete wreck”, but since that seems a little intense, I just simply reply with “I’m good, but I’m tired today.”

Anything Worth Doing, Is Worth Doing Poorly

When you live with a chronic illness like multiple sclerosis the way you approach many aspects of life begins to change. I recently stumbled upon a really great expression that demonstrates this, one that my gut reaction to was, “No, no way,” until I really began to think about it. It goes like this: “Anything worth doing, is worth doing poorly.” I’m sure many of you are just as shocked as I was when I first read it. At first glance, it’s so counterintuitive to everything I’ve ever believed. Allow me a chance to explain it though, because adopting this mantra has been very beneficial to me.

Say what?

Yes, like many of you, I am very much aware of the idea that “anything worth doing, is worth doing well.” Basically meaning, if you are going to do something, you should give it your all, you should do the very best you can and really put forth a thorough effort. It’s really a slogan I have always tried to live out as best as I could, putting forth considerable effort into anything I undertook. Whether it be my studies, my career, or even a recreational adult kickball league (yes, they have those), I would give my very best. To say I was a competitive person in my youth would be a grand understatement. So to hear what sounds like the inverse of a motto that I lived by really gave me pause. I thought it made no sense. If something is worth any bit of your time, surely it’s worth all of your effort, or else why undertake it at all?