I have been struggling to find the right words to say regarding this last relapse. I have been angry, sad, anxious, and disappointed that this happened again so soon after my initial diagnosis. When I was diagnosed 10 months ago, my doctor didn’t anticipate me having another episode for another couple of years, so you can understand why I was blindsided (no pun intended) when my vision started going out in my left eye.
This optic neuritis episode was a little different than my first one and not nearly as bad. This episode began with pain in my eye for about a week and then led to my vision getting blurry. The morning that I woke up to noticed my vision wasn’t normal, I literally sat on my bathroom floor and cried for about 30 minutes. I was so pissed that this was happening and even more pissed that I had no control over it. Clearly what I was currently doing, diet and lifestyle changes, was not working. I felt like a failure. Sitting around crying about it wasn’t going to fix anything though. So I picked my hot mess self off the floor and called my doctor. This always seems to happen on a Friday, therefore I had to wait until Monday to see him. It was either that or go to the ER, and no thank you. I don’t need that kind of bill in my life right now. Friday night was my first night of 5 that I was supposed to work due to a scheduled trip to Colorado the following week. The thing is with hospitals careers is if you call off on a weekend, you are automatically put on the next weekend. Although I was relapsing, I still had full intentions on going to Colorado with everything already paid for. That being said, I had to suck it up and at least make it through a couple nights of work.
I was started on steroids again after seeing the doctor. This time around, they definitely messed with my stomach a lot more. I don’t know if it was the high altitude in Colorado or my body just completely exhausted from night shift, but I was so nauseous, light headed, and tired after starting my medication. But I got through it and it helped tremendously with my eye pain. Almost a month after my initial symptoms, my eyesight is almost back to normal.
With this relapse, came new symptoms. I started to have tremors in my hands, my eye twitches (quite frequently actually), and I have been experiencing the dreaded insomnia that is common with MS patients. The tremors come and go, but when they are there, they are so incredibly annoying. My symptoms are more prevalent when I am under stress. Specifically when I am at work or working out. Two important times when I need my hands to be working properly. Then my sleep schedule is already out of whack due to being night shift nurse, but sometimes on my off days my insomnia is so bad that I only get 4-5 hours of sleep. So I am left with a permanent feeling of being exhausted all of the time.
I do not share all of this to receive pity from others. I do this to bring awareness to this disease and for others to understand what is happening to me. Sometimes I am too tired to leave my bed, so I have to cancel plans. Sometimes my anxiety gets the best of me, and I don’t answer my phone for days. This is my new reality. This is the new me.
The relapse, like I mentioned earlier, told me what I am currently doing is not working. It terrifies me that my MS is advancing this quickly and it is terrifying to think what my future may hold. I could end up in a wheelchair. I might not be able to work, or run, or hike, or travel or do things I currently can. This type of future gives me so much anxiety that I can barely breathe sometimes. After a long discussion with my MS team, I will be starting infusion therapy. It is a type of therapy that will kill off the majority of my B cells, in hope that my immune system will quit attacking me. In other words, it will be suppressing my immune system, putting me at a higher risk for infections and catching illnesses. But hey, at least my own body won’t be working against me right?
People try to tell me to see the positives, to see the silver living. And although I want to smack people in the face that say things like this disease is a “blessing in disguise” or that this was “God’s plan”, I can’t help but think that this disease helped open my eyes to a whole new world of health. I considered myself a healthy person growing up, but boy was I far from it. I have learned what my body needs to not only survive, but heal as well. I am more in tune with my body than I have ever been in my entire life. I know what foods trigger symptoms, I know what foods help my symptoms. I am so incredibly nervous to start infusion therapy, but I am happy to know I at least have food on my side.
I don’t want this and I never asked for this, but somehow, someway I will make the best of it. I will put my health first. I will remind myself of all things that I have overcome, and that this is just another thing that is building me into the person I am meant to be. I will tell myself that maybe (just maybe) my story will help others. Maybe it will encourage others to put their health first. Maybe it will help others struggling with MS. Maybe it will give people hope. This disease has truly shown me how short my life can be and how much we take for granted the bodies we were given. Don’t make the mistake I did, and actually cherish your body.
My autoimmune disease may make my body “imperfect” but I will take the good days when I can. Today I woke up after sleeping 8 hours, no tremors, vision a little bit better than yesterday, and feeling hopeful for the future. I will overcome this.