I frequently get asked the question: “What’s the toughest part about having Myasthenia Gravis?”
For each person, the answer to this may be different. I can’t answer for others, but I can share with you what’s the toughest part or parts for me.
There are a lot of different components to MG and just as many ways that it can affect you. It can challenge you physically, mentally, emotionally, and spiritually. Allow me to discuss each separately. Hopefully that will help paint a clearer picture.
Physically, the toughest part for me is the severe charley horses I get in the calves of my legs. They come on suddenly, often without warning, and the physical pain can be so severe it pushes me to the ends of my limits. Trying to pull back on my toes helps most of the time but sometimes they’re so severe, I’m unable to even do that. All I can do is wait (and pray) for them to be over. Charley horses can be caused by a variety of medical reasons, not just MG, so I’m not sure if the charley horses I get are directly related to MG. All I know is charley horses are common among people with MG. I often limp for an entire day after a bout with charley horses. Warm baths (which are contra-indicated with MG) seem to help and are often my only source of relief. I’ve never been able to get into a warm bath during a charley horse, but I find the warm water helps soothe the pain that lingers.
Mentally, the toughest part is not allowing Myasthenia Gravis to win. It’s so easy to get mentally worn down by this disease. I combat this by staying positive. Staying positive is a choice and you have to be willing to make that choice each and every day. Once you begin focusing on the aches and pains, your mind shifts quickly to a victim mentality. That’s a very dangerous place to be as it will make your symptoms worse and hamper your willingness to fight. I use a technique I call “Erasing and Replacing”. I try to erase a negative thought that is trying to race through my head and immediately replace it with something positive. If you only erase the thought, it will return. Replacing the thought with something positive keeps your mind active so there’s no room for the negative thought to return. I do this throughout the day because, let’s face it, negative thoughts are always trying to attack. I choose not to let them get a stronghold. By erasing and replacing, I recognize the negative thoughts are there, I choose to push them out of my mind, and then I quickly replace the negative thoughts with positive ones so there’s no room for the negative thoughts to return.
Emotionally, the toughest part is fear. For me, and I would assume for most people with MG, the fear of what may lie ahead is daunting. Will I be able to continue to take care of myself or will I become dependent upon others? We don’t know what’s ahead, so we’re unable to really answer that question. There’s no good way to avoid that emotion and they always tell you that you shouldn’t let emotions stay bottled up inside you, so what can a person do? When my emotions start playing with my head, I turn to God. My God is a merciful God. He doesn’t want me suffering, but He’s given me free will. I can choose to either turn to Him or turn away from Him. I’m proud to say I’m pretty good about always turning towards Him. He is my strength and with His help, I can overcome any emotions that try to take over.
Spiritually, although some struggle with this aspect, I’m very comfortable with my relationship with God. I know He has my hand and walks beside me in everything I do. I can understand why some people turn away from God during a crisis or at least get mad at Him. After all, how did God allow this to happen? I personally avoid those kinds of thoughts by realizing growth is a product of experience. Sometimes we need to experience something in order to grow. Sometimes we just need to recognize and appreciate how good life used to be. I find comfort in God. He calms my soul. The decision to heal me or allow me to continue with MG is entirely in His hands and I’m good with whatever plan He has for me. I would never be writing this blog if I didn’t have MG or if I didn’t find comfort in knowing God wants me to use my experience to help others.
If you’re struggling spiritually, or know someone who’s struggling spiritually, I encourage you to reread the words of Psalm 23 v. 4″ “Yea, though I walk through the valley of the shadow of death, I will fear no evil, for thou art with me. Thy rod and thy staff they comfort me.” Feel the comfort of having God with you. Instead of turning away from Him because you’re angry or don’t understand why, turn towards Him and allow Him to show you what He has planned for you.
So, those are the toughest parts for me. If you have MG, answer that question for yourself and share your answer with the people you love. Not only do you need to acknowledge what you’re feeling, but they need to hear how MG is affecting you. If you know someone with MG, have this discussion with them. Get them to talk about what they’re feeling. In order to deal with an issue, we first must be willing to face it.