Living with Myasthenia Gravis

May 17, 2015

                                                 


People living with Myasthenia Gravis looks perfectly healthy (with medications) and do they daily chores like normal people unless you saw them with myasthenic crisis (difficulty breathing, walking, etc). Once they overcome the crisis you thought they are fine with the medications and smiling face but inside they are really not.

Sometimes I can’t differentiate whether I’m tired or not because I feel tired all the time. I forgot how it feels to be strong and normal again, my definition of normal is when I take my medications. My medications are my magic pills. I’m panic when I forgot to bring or almost finished my medications because I know I will be weak without it. Its like I’m addicted to it. I forgot all the pains and side effects of the medications because I’m addicted to being stronger. I’m afraid the effects of the meds will soon fade away, all the nausea, stomach pain, muscle cramps, and cholinergic symptoms don't bother me anymore. 

Normal people wake up feeling energetic, people with MG wake up with muscle cramp, increase salivation, diarrhea, and sometimes vomiting because of the meds. Every morning I don’t dare to stretch my legs because the muscle cramp is so painful and almost unbearable. Hyperhidrosis is normal for me, I can make a dry paper wet with my palm. Superpower!  

I looked at my watch every four hours to remind myself to take the magic pills again. My watch is my best friend I can’t go out without it. My days start with my magic pills at 6 am, 10 am, 2 pm, 6 pm, 10 pm, 2 am to keep my body going. I try to avoid any strenuous physical activities as much as possible but its impossible because I want a normal life just like my friends so I do it anyway because I have my magic pills.

I can laugh with my friends even though my stomach is churning from pain. My palms and feet are wet but its alright I can hold a tissue till its wet and crumpled if I forgot my handkerchief. My eyes are getting smaller but I can look down and it will feel much better. Sometimes I can’t even open my eyes I used my fingers to lift it open. Some people find it funny and make fun of my appearance. I don’t know what to feel anymore, I can’t be angry because I’m sure I looked funny. I have a slouchy posture because I can’t even stand or sit straight for five minutes without the pain slowly swallowing my shoulder and crouching on my back. My legs are the one I trust the most but sometimes I fall without warning or can’t lift it at all. I can imagine myself unable to stand and walk anymore, the picture is just awful.

I was often asked how was your eyes? from people who knew that I have been sick and they start to examine my eyes and lifting it and cynically said no changes huh! I said I’m doing just fine I’m on drugs now but little did they know the problem is in my body not just my eye. But I don’t bother to explain anymore because the more I explain the more they get confused. I guess its normal people tend to look at your outside appearance. You are doing just fine unless you are bedridden.

I find its hard to give excuses when I don’t want to do certain physical activities. When I told them I have muscle weakness it's almost hard to believe because I looked perfectly fine and when I said I have Myasthenia Gravis I end up making it harder for myself because they looked puzzled with an alienated alien name disease. It was so peculiar it sounds like a very contagious disease.

I can’t estimate the distance to step between stairs because of my blurred double vision. Sometimes I injured myself if there is a sudden muscular weakness as I take a step and suddenly find myself flat on the footpath. Even worse is the sudden muscular weakness whilst driving like double vision, heavy eyelids, loss control of my legs, and weakening arm muscles.

When the doctors said there is no cure, my family tried everything that I can’t remember how many places I have been to repel evils from my body, shamans, body massage, traditional herbs, supplements, etc. I’m still sick. I don’t understand what is going on with me.

That is how my life looks like for the past 12 years living with MG. In May 2010, I decided to stop all my medications and began my holistic treatment. It is not easy but so worth it because I can live normally again. These past few years I have learned a lot after endless research, experimentation on myself with different approach on natural treatment without the use of drugs and conventional treatment. 

I will share my experience and journey on how I overcome this horrible disease in this blog. I have lived with MG since I was 10 years old and never give up in healing myself even when the doctors told me there is no cure. Today I am living my lovely life without the help of any drugs. I still have symptoms of Ocular Myasthenia Gravis but OMG it is way better than having generalized MG. 

 If you have MG or know someone who has MG or just stumbled upon my blog I hope you can learn something, and I hope my experience can help others and create awareness about this disease.


Image credit: Pixabay

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1 comments

  1. The Myasthenia Gravis reaches its extreme severity when the person affected is not resting because it doesn’t cause any harm when a person is at rest.

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