When I Struggle

In addition to the physical side of Myasthenia Gravis, there is also a mental side. I thought I should spend a little time talking about that today.

Let me first explain that I’m not a licensed counselor, and I’m not qualified to offer professional advice. However, I can share with you some of the issues I experience and how I’ve attempted to deal with them. That doesn’t mean it’s the correct method or that my methods will work for you. It simply means I will share my story and you can decide for yourself whether or not to try the methods I’ve been using.

Myasthenia Gravis primarily affects voluntary muscles, but its impact goes far beyond physical symptoms as it can also affect your mood, your cognitive abilities and your mental well-being.

The muscle weakness and fatigue caused by MG is unpredictable and fluctuates daily. This inconsistency can lead to frustration, anxiety, and even depression. In addition, people with MG often get discouraged due to physical limitations, especially when they struggle with basic tasks they once performed effortlessly. To top it off, it’s a “Snowflake Disease” where symptoms come and go out of nowhere without warning. This can play a toll on your mind as you begin to wonder if your symptoms are real or imagined. Soon, you don’t know what to believe and begin to lose faith in yourself.

On the cognitive side, brain fog is real and can be caused by fatigue and the side effects of medication. When brain fog develops, a person can experience memory lapses and have difficulty concentrating.

Then we have mental well-being. Chronic illnesses, especially ones that affect daily functioning often lead to feelings of sadness, isolation and anxiety. We miss being able to do the things we once did, we tend to isolate ourselves from others, and we become anxious about what lies ahead. The unpredictable nature of MG creates constant worry. We even find ourselves avoiding social events due to fatigue, difficulty speaking or swallowing, or because we’re afraid our symptoms will suddenly reappear and embarrass us.

As you can see, MG can result in a lot more issues than those that can be visually seen. There can be an entire soap opera going on in our heads.

When I’m challenged with the mental side of MG, I try to focus on keeping myself busy with things that are positive and productive. For me, this includes writing this blog. Sharing my journey with you not only helps me get it off my chest, it allows me a chance to possibly help others in the process.

I strongly encourage you to find something positive you can do to help get your mind off your situation. Write, read, volunteer, knit, watch a movie or whatever it is that takes your mind away from focusing on your troubles. It will help immensely.

I also know that when I begin experiencing brain fog or my mood begins to slip, it’s time to rest. Fatigue does me in and once I reach a certain point, I can no longer function. Fighting it and failing to rest only leads me down a slippery slope when I find myself getting sick, becoming short with people, or saying things I’ll later regret saying. I’m not a mean and nasty person, but I know when I’m spent, I’m not myself, my patience wears thin and sometimes mean and nasty stuff slips out. For that reason, I’ve learned that when I can no longer think straight, it’s time to rest.

When I feel stressed, it’s usually because my brain is overloaded. When that happens, I begin to internalize anything and everything. I personalize things I have no reason to personalize. I somehow try to carry the weight of the world on my shoulders. If I start to experience this, I try to refocus my mind on things that are positive and productive. I write, read, watch tv, or anything that will get my mind off my problems.

When I’ve exhausted my attempts to handle things on my own, I try talking to loved ones who can help me process the emotions I’m feeling. I reach out to support groups who understand what I’m going through. I frequently check out the MGFA website at http://myasthenia.org where there are all kinds of resources and support available. I also know there is therapy and professional counseling available.

So, that’s my method. I get rest when I’m tired. I take my medications as directed. I refocus my mind onto positive and productive things. I get help when I need it.

Nelson Mandela once said, “I learned that courage was not the absence of fear, but the triumph over it. The brave man is not he who does not feel fear, but he who conquers that fear.”

Yes, my friends, MG also requires courage. It’s not wrong to experience fear; it’s just wrong to let it overcome you. When you’re struggling with the physical or mental side of MG, try some of my methods or find others that work for you. Stay strong, stay courageous, and above all, know that you are not in this alone. There is an entire community of people who are willing to help. Reach out. You may be surprised how much support you’ll receive.