I have found that dealing with MS is more often than a not a battle with myself. It becomes a daily fight trying to remember who I want to be and fighting with who I feel the disease is making me. It feels like a battlefield where the stage is constantly changing and the enemy is never truly visible. Let’s not even get started on the notion of losing, because when I lose it feels like it’s my own fault and that I didn’t do good enough.
It takes it’s toll on me mentally, emotionally and physically. I can’t verify the accuracy of this because I haven’t done the research yet, but I have come across several posts that say MS has some of the highest rates of depression among chronic illnesses. I can believe it. Some days are just so freaking difficult that I’m amazed I ever make it out of bed, let alone make it into work or go about any of the things I may have planned for the day. I remember a couple of years ago I felt like depression was becoming a serious problem in my life and I made plans to meet with a therapist. And I did. Went to about 3 sessions. And he helped me get a grasp on a few things. He helped me recognize some signs of depression and taught me some ways to potentially cope with it, all while relying on my personal strengths and things I loved to do already as the main tools I could rely on. Those lessons are invaluable to me, even to this day, and I work extremely hard to try and be aware of my mental health day to day and to measure how I feel I’m doing. Sadly though, despite being incredibly helpful, it has not changed the fact that this whole MS thing is a constant struggle.
I know so many people mean well when they try to offer advice about my MS. I know that many have pure hearts and good intentions. Despite that, it can be hard to talk to them. It can be so challenging to listen to some people when they offer their own two cents. I really feel that unless you have what I have and go through what I go through, you won’t understand – and I don’t mean that to be a slight against anyone else or to say others are incapable of empathizing. I don’t expect anyone to understand. There simply is too much there to ever ask that and I wouldn’t wish this on anyone. I’ve learned as well not to hold it against people. I honestly believe that most people have good and honest intentions. However one phrase has stuck out more to me than the others over the last few years and I can’t begin to count the number of people who have told me to “not let the disease define me.”
I rarely know how to respond to this. I’m sure I barely contain my exasperation when they tell me to not be defined by MS and to be myself. I normally respond with a barely concealed sigh and a contrite “Yeah, I know. I won’t” and try to change the subject to anything else. Like “man, those non existent sports are just something else today , eh?”
How the hell am I suppose to keep a life changing, chronic illness that does affect large portions of my everyday life and impacts my ability to do things from defining me? It never made sense to me. I feel like I’m hyper aware of my MS and have been since the day I was told about it. I’m always aware of how I’m feeling, especially physically. I’m constantly trying to stay on top of my energy levels. Like driving a car when you can’t trust the gas gauge to be accurate and you have to be aware of how far you’ve driven to judge how much further you can go. I must always think of the next few days. If I go to a concert and spend all night out having a great time at a show and with friends, I am going to feel that over the next few days. And if I need to be active for those few days, I must decide if I’m willing to pay the price for that night out.
Is it worth it? It’s a question I constantly ask myself.
To me, this is defining. It does have an impact on my day to day life. But I don’t feel like I’m letting it control my life. Rather, I feel like I’m learning to take control of my life. That is a huge distinction for me personally. I do say no to activities at times. I’m sure my friends can testify to the fact that I have cancelled on them, often because I wasn’t feeling up to it. I can’t over state how blessed I am to have some amazingly understanding and caring friends who are completely willing to put up with me. It means the world to me. But I know sometimes that I’m up to my limit and it’s not always worth it to spend the next few days in a forced recovery mode as I try to rest and get back to “normal.” That’s not to say I never pass that line. I do. Probably more than I should, but there are things I love to do and that is absolutely worth it.
It’s always a battle. It’s always a decision. And learning that there isn’t a wrong or right is a fight all it’s own. Of course, there are always the days where I want to do stuff. Days where I want to get out with my brother and help build the deck thingymajig he has been building for our mother and yet I just can’t. I don’t seem to physically have the energy to get outside and carry the wood, to maneuver the tools and be helpful in any way, shape, or form. There are days at work where I’m amazed I was even able to drive to work, let alone walk into the building, to my desk and unplug the radio I’m going to carry for the next 8 hours. There are days where it seems like just riding the elevator is the equivalent of running a marathon, and I watch the doors open and I question my ability to walk forward and seriously debate just how concerned everyone would be if they found me collapsed on the floor of the elevator and spending my whole shift playing greeter. Trying to remind myself that I’m not a failure on those days is a struggle. Telling myself that it’s okay to have a slow day or a bad day seems so easy until I feel like I’m letting those people around me down, or worse, that I’m letting myself down. It’s a vicious cycle that once started, can be so incredibly difficult to stop before it takes even more of a mental and emotional toll.
Recently I wrote on how I felt the day to day was safer. I still stand by that in a lot of ways. I struggle to make plans far out sometimes because I don’t know what’s going to be happening or what I’m going to be feeling that day. And I probably have missed out on some opportunities because of my fears. That is a work in progress. It’s not easy. But I’m aware of it. And I’m trying to not let that be the case. Still, the day to day often seems safer. It seems safer not to think too far in the future. The future with MS is terrifying to me.
It scares me because MS is progressive. While I might be diagnosed with the relapsing-remitting form of the disease, it is still progressive. There is this constant weight at the back of my mind tethering me to the idea of everything getting worse. And not worse in the idea that life could always take a turn for the worse – you could get in a car accident or something similar which would be awful. To me, this knowledge of worse just feels a little more definitive, a little more guaranteed, and a whole lot scarier because of that. All too often it’s easier to take those feelings and fears and shove them deep in the darkest, most cobwebby places in my mind and try to forget about it. Out of sight, out of mind. Sometimes it’s the only way to get through the hardest days. The only way is to tell myself that tomorrow will be new. Tomorrow will be better. To ignore the reality that I can’t actually promise myself that and that I am merely hoping for the best.
A couple weeks ago I had an MRI. And within about two days I got a message from my doctor telling me the results were in. I remember vividly because I was still at work. It was in the quiet hour between 2 and 3 am, when all the students have gone home and only full time are left. I was catching up on some computer work when I heard the notification ding on my phone. I opened it to see a message from my doctor, and before I read his message I flipped over to the screen that had my MRI results.
It wasn’t good.
And that hit me hard. Kind of stopped me in my tracks so to speak. I was aware from the start that this was going to get worse. Yet that reality had stayed away until now. Suddenly I was hit with the very real news that it was getting worse. I freaked out a bit, I’m almost ashamed to say. I felt super down. I felt that I was losing and it was my fault. And as usual the mask I hide behind came up. I did everything I could to appear perfectly normal with everyone around me while feeling like I was dying on the inside. My dad came through for me again with the saving line though. I told him how down I was feeling and he said “Don’t feel down. That never helps. You need to stand tall and strong. Your strength comes from your mind and that will help you stay sane.” And then he challenged me to find something to look forward to. To find some goals. To make some plans. To go and do. He said “you drive your life. Don’t leave it up to fate.”
As per usual, my dad was right. I’m in the driver’s seat of life. I’m in control. I can own up to the fact that it may be a bit harder for me than others. That I have a little more to deal with. If I’m being completely honest though I’m grateful for that. Because it has taught me to work my ass off for the things I want. And I take that attitude with me into everything I do. It means that I always give my all. Sometimes my all leaves me short of where I want to be, but I can rest easy afterwards knowing for sure that I gave it everything I had. That my efforts weren’t wasted. And when I succeed at something, whether it’s a personal goal or it’s a project at work, or even when it’s just getting up for the day and getting dressed, I know I worked for it. I know I earned it.
I genuinely believe that the MS has had a defining impact on me and my life. I also believe that those definitions don’t need to be negative. Rather than chaining me to a life I don’t want, I have decided to take the lessons MS can offer and rewrite them to fit me and what I need. I have decided that MS won’t hold me back. I have decided to be defined as someone who is willing to show up and work despite my MS instead of using it as a chain to keep me from being there. Truthfully, there is little I won’t be able to do because of my MS. Rather, I think there is more I will do because of the MS. To prove that it doesn’t hold me back. To prove that despite facing the many challenges and the bad days, that I can navigate those and come out on top.
So yes. MS has defined me. But I’m also defining my MS.