How to Cope With Unpredictable and Fluctuating Symptoms

Dealing with unpredictable and fluctuating symptoms can be quite scary and quite a headache if we want to be honest. You never know what to expect on any given day and I honestly believe that it is more frustrating than just dealing with MG. Being able to tell what may be different or how to handle things is going to be a major part in preserving your mental and emotional health.

A new symptom

During my time on a previous infusion therapy, I noticed my body started hitting a plateau. Basically, nothing was improving and I actually started going backwards! For the first time in my MG journey, I experienced a symptom I never dealt with before. I started slurring!!

It was extremely scary

I had never dealt with slurring speech before. It lasted about a week despite recently completing an infusion, resting, daily medications and all. Thankfully I had an appointment coming up with my neurologist, so I informed her of the change in symptoms.

Feeling self conscious

I did everything I knew I had to do, but I was still so scared and nervous of what others would think. I was worried people would assume I was just hanging around drowning my liver in alcohol when I don’t even drink. I often caught myself telling people that I was sorry in advance due to my speech that it was due to my MG flaring and experiencing new symptoms.

It actually took a toll on my mental health due to the stressfulness of the new symptom but then I just worried about how the next person perceived me.

Muscle weakness and fatigue

Another thing we often face is fluctuations in actual muscle fatigue. One minute we are fine then next minute, BAM, fatigued or unable to complete what we were working on. The most important thing to remember is you’re not alone! Don’t let a minor setback influence your thoughts on yourself. It can truly impact your mental and emotional health.

Which brings me to my next point, I have struggled with depression and anxiety for years. I often went unmedicated due to knowing how to cope. But when my diagnosis of myasthenia gravis came to play, it amplified it. I knew medication was the only route I could take to properly manage my MG and the mental health impacts.

It’s been a game changer and if you need to please discuss your mental health with your neurologist, I promise you, you’ll be a lot happier you did!

You're not alone

Myasthenia gravis isn’t a cutesy little walk through the park; it’s more like navigating Jurassic Park with no vehicle. There’s a lot of twists and turns, a lot of what do we expect next, just a lot of uncertainty all the way around. But I can assure you that you’re not alone, you’re not weird, you’re just navigating a way of life none of us ever expected.

Be kind to yourself

Resting is okay, delaying a household chore until you can function as close to normal as possible is perfectly fine! Needing to take a day to yourself and call out of work is okay, if the job doesn’t want to understand, there’s another one out there that will appreciate you even on the worst days. MG is like a game of poker; you have to know when to fold them. You have to listen to your body, and you have to understand that while yes, the new, or fluctuating symptoms can be scary but informing your doctor and getting them on track is key.

And care for your mental health

And remember, mental health is real, MG as well as other health issues can impact your mental health. Even the strongest people still battle mental health issues, talk to your provider and figure out the right path to secure your mental health issues.

Medication, therapy, reading a book, crafting, journaling, etc. are all positive ways to help retrain the brain. Just always remember to keep your support team (friends, family, coworkers) and healthcare provider in the loop on symptom changes, that way they know what to expect, look for, and even if needed speak up for you at doctor appointments.