Recently, I talked about what it was like to live with two chronic illnesses and how, with the right attitude, you can navigate through your diseases and come out on top. Now, that’s great and grand, and it’s very easy to have a positive attitude when you’re in remission for one or both of your diseases, but what happens when one disease causes the other to flare up? For me, this has happened a few times.
In 2011, I was right in the middle of my surgery sequence to remove my large intestine due to ulcerative colitis (UC). I had been having surgeries for almost two years at that point, and I’d had successes and failures. I was about two months out from what would have been my final surgery to connect my j-pouch and I woke up one morning with double vision so severe that I almost couldn’t walk.
I knew in that instant exactly what it was. I have multiple sclerosis (MS), and the double vision was caused by the dreaded optic neuritis, which is inflammation of the optic nerve. I’d had optic neuritis before and I lost vision in my right eye for a few weeks. MS is a lot like IBD in that my doctor’s favorite choice for fast-acting treatment is steroids. So I called my neurologist and explained what was going on and we both decided that since my vision was severely altered, I should start a short course of steroids to get me back on my feet. I hate taking steroids and will generally refuse them when in these situations, but when it comes to my vision, I need it. So I started a dose pack with only one thing on my mind: getting through the MS flare with my vision intact. I was so close to my surgery and I just wanted to get back to being healthy in all aspects of my life by putting severe UC behind me and living again. But, that is not what happened.
When I later called my colorectal surgeon to inform him that I had an MS attack and had started a short course of steroids, he immediately canceled my surgery. I was devastated. I had worked so hard to get to that final surgery and now something completely out of my control had ruined it for me. He said that, due to the steroids, my tissue would be compromised and it was no longer safe to perform the surgery. Receiving that news from my surgeon was, to date, the most devastating moment I have experienced in all my years of being sick. I still had my ostomy, I couldn’t see, I wasn’t getting my surgery, I was going crazy on prednisone again, and so I lost it. I completely lost my grip on reality and fell into the deepest depression I’ve ever felt. In that moment, I had completely lost my will to live.
I eventually made a new game plan. I met with a new surgeon and gave him the rundown. This saint of a man agreed to do surgery on my originally scheduled surgery date. I was elated and, in the end, the MS flare subsided after a few weeks, I had my surgery and life went back to normal. But, it is important to remember that depression and chronic illness go hand-in-hand the same way that stress and chronic illness does. One affects the other, which affects the other, and it becomes a big, seemingly endless cycle that often leaves people feeling drained mentally, physically and emotionally. I sometimes feel like I’m just one bad thing away from losing my mind again because "one bad thing" for me, often turns into "multiple bad things," as my health issues are easily triggered by each other. For most of us, stress is a huge trigger. Stress can aggravate my j-pouch and can throw me into an MS flare, and if I’m really “lucky,” both happen at the same time. Honestly, I live in fear over when my next MS attack will occur.
The way that you get through dueling illnesses is to take everything one step at a time. For me, it meant handling my MS attack first and dealing with the surgery later. Situations like this can be extremely overwhelming. The key is to take baby steps and be as proactive as you can. Each case and each problem is unique and needs to be handled on an individual basis. When I look back on that period, it’s a harsh reminder of how bad things can get. It could be considered my “rock bottom.” But, the beauty of knowing when you’ve hit rock bottom means that you know you’ve already gotten through it once and you can do it again if you have to. It’s a good reminder that even the worst scenarios have a silver lining. What is your silver lining?
Jackie Zimmerman is a multiple sclerosis and ulcerative colitis patient and the founder and executive director of Girls With Guts. Since diagnosis, she has blogged her IBD journey at Blood, Poop, and Tears. Jackie has worked hard to become a strong voice in the patient advocacy community and pays it forward as Social Ambassador of the IBDHealthCentral Facebook page. In her free time (what free time?!) she spends time with her two rescue pups and plays roller derby. She’s online @JackieZimm.