It’s time.
Almost 10 years after being diagnosed with MS, on August 24, I had my first half dose of my first ever MS drug (disease modifying therapy). And the second half dose is coming September 7. This decision was not an easy one. After going blind in my left eye, ever since being diagnosed, other than one relapse in 2015, I have felt somewhat stable from major attacks. I have managed symptoms and flare ups with diet, supplements, exercise and always working on my mental health. But over the years, despite my best efforts the MRIs have continued to tell a different story. Physically I have had no major lasting relapses, and yet those darn spots on my brain keep showing up.
MS already comes with a world of unknowns. MS is always there yes, but after almost 10 years some days it’s easier to forget about it than others. Imagine now, no matter what you do, no matter how much work you put in, something is still off. I don’t know what those active spots mean, but something is clearly still happening and the what ifs started to become too much.
Going back to when I was first diagnosed, the first time I saw a neurologist the options for medications were daily injectables, that’s it. That was just not an option for me and I was stable enough that it didn’t matter. I was put on prednisone to get my vision back and it made me so sick that I wanted to avoid drugs at all cost. Fast forward to 2015, I was in an incredibly stressful time of my life and faced another relapse. I managed to recover without medication, but still deal with the damage it left behind. Since that time despite all my best efforts of diet, exercise, supplements, and anything else every “sick” person always gets told to try, that MRI just keeps telling a different story. Something is still happening and at this point I need to make sure it doesn’t turn into something I look back 10 years from now and regret. People can believe that sleep, sunshine, exercise, crystals, essential oils and all those other things are all you need to be healthy, but until your body is attacking your own brain no matter what you do, sorry I don’t need your opinion. All these simple lists of everything you need to be healthy must be great for people who don’t have a serious underlying condition, but for me, it’s just not enough anymore.
Over the years I have watched the number of options for MS drugs close to triple. These drugs coming from incredible researchers I have the utmost respect for. The drugs went from only daily injections options to options like injections ever second day, once a month, pills, infusions every six months and even stem cell therapy. The same researchers who are studying pain management and benefits of exercise are also the ones coming out with these new treatment options.
As for anyone over this many years, my life changed, my priorities have changed, I want things I never thought I would want and don’t want things I thought I did or would. This life has thrown me so many challenges, but also so many opportunities. Where I am in life and where I want to go were all careful consideration when making this decision. Yet this decision still felt impossible, like no matter what, drug or no drug, it felt like the wrong thing to do. I am also terrified that becoming immunocompromised puts me at such a great risk right now. MS always plays a factor into all my decision making, something most people will never understand. Every single thing I do comes with a cost benefit analysis, and a risk assessment. Those who know me well know I am incredibly indecisive, mostly because I don’t do well with the regret that comes from feeling like I made the wrong decision. Except this time it’s not the silly kind of regret like trying something new instead of ordering my usual, only to be extremely disappointed and wish I had just got the salmon (if you know you know). This decision can change the entire course of what my life with MS might look like, but it also might not. It might make my MS better in the long run, but also might make me more at risk of dying of a certain virus. Fun hey?
For my entire life for one reason or another I have never felt like enough, no matter what I do. Some times those around me have made me feel this way but most of the time, I make myself feel this way. Now, no matter how hard I have fought to manage my MS, those thoughts are creeping in. Did I not do enough, am I not enough? Those days I have fought through pain and fatigue, were they not enough? Should I have pushed more? Or did I not rest enough? When am I going to be enough? When is it enough? I am constantly in a battle of wanting to live my life to the fullest and being realistic. But what if trying to live life to the fullest puts me in a dangerous situation and leads to no life at all. It is not black and white. Do you create a life worth living only to lose that life because you took too much of a risk? If reading this gives you anxiety, imagine living it. Nothing in this situation feels right. Going on the drug doesn’t feel right, but not going on the drug doesn’t feel right either.
At the end of the day it came down to this, not being on a drug hasn’t worked the way I had hoped, so now it’s time to try a drug. Wish me luck.
