When I was first diagnosed with Myasthenia Gravis I was relieved they had a name for my varied and random symptoms. I had read there was no cure but treatments could help the individual lead a normal life.
I also learned over the past three years that the treatments are not always effective. Some people are refractory, or resistant to treatments. I am one of those people. No one prepared me for that reality. Much of what I learned about MG was from personal experience and the experience of others who also suffer with this autoimmune disorder.
No one prepares you for the losses that are sure to surface; the ability to walk without fatigue, the weakness that takes over your voluntary muscles will prevent you from engaging in activities that you once enjoyed, as well as those that impact your ability to function daily. No one tells you that showering will tire you to the point of being useless afterwards or in my case, carrying a cup of coffee 5 paces down a hallway would require altering hands because the coffee was too heavy for the muscles. Mixing eggs for breakfast would become a thing of the past because the repetitive movement weakened the muscles. Gone will be the days of cooking from scratch because the energy required will not be accessible. No one prepares you for a fatigue that is so great it is not improved with sleep. Perhaps the greatest thing left in silence is how limiting one’s life can become.
Sleep patterns change either due to medications (steroids to reduce inflammation), or you are awakened choking on your own saliva because your muscles for swallowing failed to work. Maybe your breathing is affected due to weakened diaphragm muscles and you can no longer lay flat or in your favorite position because you now need to elevate yourself. After all breathing is preferred.
No one prepares you for the intense side effects you may encounter from the medications and treatments; the complications you can endure as a result of your immune system being wiped out. However, most importantly during this battle no one prepares you for the amount of self-advocating that is required. Doctors will not be aware of your condition. Sometimes egos get in the way and we are dismissed or talked down to. One will have to advocate for tests and fight insurance companies who will reject your claim for a treatment or medication. Potentially life changing decisions made by people who have never heard of Myasthenia Gravis or even know how to say it.
Those who suffer with MG are referred to as Snowflakes because no two cases are the same. The severity to which each person is affected can vary greatly. My symptoms and experiences shared here might be similar with another to some degree, but the combinations may vary.
Weather, stress, illness and medications can increase an individual’s symptoms. The cocktails used for treatment will vary based upon the type of MG a person has. No one prepared me for any of this.
Being Myasthenia Gravis Awareness month I thought I would share my experience so maybe someone out there can be a little more prepared.
There will be good and bad days physically and emotionally. Your social life may dwindle to a home life. Gone are the days of making plans ahead of time because your symptoms can change remarkably throughout your day. You will make close connections to others with MG through social networks, if you choose. This will be a blessing because some days it may be your only interaction with people.
It is my hope that one day there will be a cure. Until then it is my hope that we will not have to fight doctors and insurance companies – the very people that are supposed to help us – in addition to fighting our disease.
No one prepared me that my vision could become cloudy, hazy, double or blurred when tired, limiting my time with my favorite hobbies; reading, writing, blogging and drawing. So for now I will end here. Please feel free to share your stories so others can be more prepared.