This past December I came down with a sinus infection (something I’m all too familiar with). Before I knew it, it was 2020 and I unfortunately also caught the dreaded influenza; type B. Anyone with MG knows that getting sick in addition to having a chronic illness is like a building being bulldozed; it can destroy you and take you down rather quickly.
When I fall ill, my MG symptoms are often exacerbated, only making it that much more difficult to recover. Usually, within a few weeks (sometimes months even) I am on the mend and can get back to baseline with time. However, this time was different…
Over these last 6 months, I’ve been dealing with some returning MG symptoms and can’t seem to shake this flare I am going through. It’s been years since I’ve experienced ptosis and double vision to this degree; let’s just say that I’m hoping their visit with my body is temporary and not a permanent stay.
Living with MG means living life delicately. The slightest things can potentially send us into a flare or crisis and knowing when to take risks versus when to take precautions is a tricky balance that takes time to learn and accept. I’ll never forget when I first began educating myself about MG and reading the various things that could cause an exacerbation. Stress, illness, extreme temperatures, certain medications, emotional distress, etc…I had to laugh because the resource basically stated that life could ultimately get in the way of MG, so you better live every day with caution. A fellow friend of mine put it quite bluntly: “So basically you have to live in a bubble.” The words stung (mind you we were 13 years old), but on some level she was right.
The truth is, I’m not sure what caused this flare. Whether it was the sinus infection, the flu, or my body simply changing as I am now in my late 20’s, there won’t always be an explanation for the things that I cope with in regards to my MG. Moreover, I think we all live in a metaphorical bubble. While mine may be a little more fragile, I’m not going to let that stop me from floating with the others and popping from time to time so that I can live and experience life just like everyone else.
So, where do I go from here? As we know with MG, every day is different; in fact, every hour is different and I am working diligently with my care team to address this flare in hopes to nip it in the bud. I’m frustrated with the circumstance; however, I am also hopeful and optimistic that I can turn things around with time. As my dad used to say, “patience is a virtue” and am allowing myself to trust in the process.
#MGA #MGADigest #MGStrong #MGAwarenessMonth #MyastheniaGravis #IHaveHeardOfMG This blog post was written by Meridith O'Connor, St. Louis Program Coordinator of the Myasthenia Gravis Association.