Absolutely, I agree. At least I don't have cancer, or diabetes, or Lupus, or migraines, or any other disease. But I do have Myasthenia Gravis, & this is a chronic disease.
So what is an acute disease? Acute conditions are severe & sudden in onset. E.g. a broken bone or asthma. A chronic disease means that it is a long-term disease that can be controlled but not cured. This means it will never go away.
I will fight this disease for the rest of my life. Every day is a battle that most people have no idea about. There are days when it would be so much easier to just stay cuddled up in bed & not push myself to get up & go to work with a smile plastered onto my face. There are days where I am sick of pretending all is fine & just want to throw in the towel. When people don't understand or say that MG isn't that bad, I wish I could let them live my life for one day so they could see the truth & see how well they would cope. See if they would manage walking up stairs when you have to physically lift your leg for every step; or if they could cope with taking over an hour to eat to ensure you don't choke on any of the food in your mouth; or to make it through a day without slurring your words & battling to get out what you need to say. Would those people truly cope? Would they cope with their neck flopping forward unexpectedly because you have been bent over the computer for too long? A chronic disease is a terrible thing to live with - no matter what it is. And it makes it even harder when people haven't heard about it & thus don't understand.
People have heard of cancer, diabetes, migraines etc & they seem to be a lot more understanding & patient with people suffering those illnesses. When they don't know what you are talking about, or don't understand the disease then they assume it can't be that bad.
Please, before you judge us snowflakes, read up more about this disease; try to put yourself in our shoes & think how well you would cope with your life if the MG was dictating every step of it; & allow us to have our down/negative days. I try so hard to be positive, but sometimes it just overwhelms me & I have my "all-fall-down" days. Please, love me through these times & don't just give up on me. Know that I will come out of it & I will continue to fight my Myasthenia Gravis & to try be positive every day. It is not easy. I don't cancel plans for fun or to mess you around. I don't not talk to you at the party because I am a snob, but rather because I am having a bad day & cannot physically get my words out.
Please do not give up on us! Love us no matter what, & encourage us. We didn't ask to get sick, it has made use lose a piece of our true selves, & it surprised us too! Sorry for the moan, but I am hurting right now like you cannot believe & I am still in shock at the lack of empathy displayed by some people. As we were taught at our church, "Love All. Serve All."
Thank you xxx
This is a good post. Thank you for sharing your heart and what you feel. It is very difficult to be misjudged and you worded it well. Hang in there. Hope and praying for a cure! ♡ a fellow snowflake
ReplyDeleteAnd others cannot know how frightening all this is. From a fellow snowflake. Keep looking up.
ReplyDeleteMy sweet gentle German Shepherd has this disease too. I learned through humans with the disease what my dog might be going through. I'm sad that some days are really bad for you. I hope one day there is a cure for MG! Stay strong and know that you are doing us justice by educating us on the disease. The graphics you included should stop people from judging others! (People should not judge, we don't know what others can have going on inside). Thank you for your story!
ReplyDeleteIt hurt my heart when I read this. I too have MG,but it never struck me until I was in my 70's. However,I have experienced all you mentioned and more. Including turning into a limp noodle and falling straight backwards down 13,steep,narrow,out of code steps.. I don't care how much head knowledge The Medical Community or anyone else,had about our disease. There is no way anyone knows all we cope and are daily challenged with,unless there was someway they could live just one day inside our body. Personally I believe one and at the most two days in our body by a professional,and I'd be willing to bet once out again,more research would be done. Hang tough dear. Who knows? Perhaps a cure for MG is just around the corner?
ReplyDeleteAwesome post. I like this post very much. This post will help to diagnose the chronic disease easily. Thanks for this post. COPD and Diabetes treatment
ReplyDeleteMy brother Atson had myasthenia gravis since 2015. He got medically discharged out of the Army, a job he loved well. His heart had 5 myasthenic crises, 3 being severe enough to be ventilated or require CPAP (continuous positive airway pressure) helmet. He have had countless plasma exchanges as his veins are bad. He also needed Hickman lines inserted, he have been on azathioprine, mycophenolate (CellCept), methotrexate and none have worked. He is currently done with his herbal remedy I purchase from totalcureherbsfoundation .com which has totally cured his condition with a surprise after almost four months of their usage, he was discouraged and never thought he would be myasthenia gravis (MG) free ,to me the best to get rid of this condition is totalcureherbsfoundation com treatment because all medications we used never worked include mycophenolate (CellCept)
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