My Not So Fortunate Life

Whenever people ask me about MS, I find myself saying the same line; "I'm fortunate". I tell them "I'm fortunate that it’s not worse for me" and "I'm fortunate that modern medicine has come so far, and I received my diagnosis at a time when I have medication options." But truthfully, I do not feel fortunate at all. I feel many things like anger, confusion, and oftentimes even depression but fortunate isn't something I'm used to feeling anymore. How could I feel fortunate to have been given a diagnosis with no cure? To never truly have my health back and forever be questioning what is around the next corner in my life. How can I feel fortunate to have medication options when my only real choice is to pump my body full of toxic medications, that may or may not slow progression down some, or to watch as my own immune system attacks my brain and spinal cord?

Keeping my real story to myself is lonely

It’s been a little over a year and a half since I was diagnosed with relapsing-remitting multiple sclerosis and although technically speaking, I've been in "remission" for most of that time, not a day goes by where I am not reminded of where I stand. But when people ask me how I am doing I still tell them how fortunate I am. I think that by doing this, sugarcoating my life and my disease, I am doing myself and many others a disservice. Saying this broad statement simply packs all that it is into one tiny little box with a bow on top to make it look prettier and less scary to the people around me. It makes me feel lonely to keep my story to myself, it minimizes my pain and anger and it diminishes a huge part of my life but I still haven't found a way to truthfully respond to people when they ask. "I'm fortunate" is just so much easier.

So here's my real truth

My initial relapse brought with it many things. The first and most painful was the excruciating back pain that made it almost impossible to move for the first week, followed by a loss of balance and coordination, loss of feeling in my pinky and ring fingers on both hands, tingling and numbness in both legs and constant fatigue. All things that never fully went away and still affect me daily. At first, I was grateful to receive my diagnosis because this was an answer to why these things were happening to my body. I was able to look at my MRIs and see exactly where the damage had been done and now had a way to begin treating it. But that grateful feeling was short-lived when the next step was countless needles and IVs to the point where almost every vein you looked at was bruised. And medications that made me feel worse, caused anaphylactic shock, weight gain, swollen face, and more. But I pushed on because there was no other option but to keep going forward one day at a time. I eventually reached a place in my treatment where my lesions were shrinking, and my medications were working. There was some small relief in that, but my one-year anniversary of my diagnosis snuck up on me quickly.

The symptoms keeping me up at night

With it came a hard realization for me that this isn't something I can leave behind me. Yes, I had survived this year, but there is no cure or end result for me, and this was just another year of the same battle. Depression hit me hard here and I began the process of grieving my old life. Year two of my diagnosis is coming close to an end but has brought on many challenges of its own. I recently experienced another relapse that began with muscle spasms in my eardrum which led to constant tinnitus and has caused hearing loss and pain. Inner ear problems like this affect balance and this caused dizziness, vertigo, and headaches. I quickly went through another round of steroids, just as awful as the first, to try and reduce the risk of further damage. About a month after those steroid infusions, my body began to attack the optic nerve in my left eye, damaging it, which has caused extreme pain in my eye and led to vision loss in my central vision. I now have to go through another round of steroids to try and treat this before there is further vision loss.

The reality of it all

This is what my life has looked like with MS and it's not pretty. My immune system attacks my own body causing nerve damage wherever it chooses to attack next. I take medications daily to help me sleep at night, to help me stay awake and fight the fatigue during the day and to control an overactive bladder. I do injections at home once a month and steroid infusions whenever a new attack happens to try and maintain a stable condition. There are constant ups and downs and living with this disease is just plain hard. I have to fight every day, listen to any and every small sign that my body gives me to tell me my health is falling behind again, and live in a constant state of fear not knowing what functions or nerves I could lose next.

So no, I am not fortunate that "it's not worse.” And I do not feel fortunate to have to rely on pills, injections, and infusions to keep me going. But the next time someone looks me in the eye and asks me, I will probably still hand them that little box with the pretty bow on top.