How do you explain to someone how Myasthenia Gravis (MG) makes you feel?
It makes me tired but not the kind of tiredness you feel after a long day at work. It's an extreme fatigue feeling that can leaves me with arms which feel like rubber bands or legs that are like noodles. My neck will ache from trying to keep my head upright and the droopy eyes I hide with sun glasses at odd times of the day or an eye patch most of the days. Some days I will choke on my own spit and I cant smile because my facial muscles won't contract. My family knows to let me be alone for some time because I need to be with myself. This is what makes me feel miserable and vulnerable having nothing else to think of but keep pondering over a thought of helplessness. But I never loose hope. I sweat from the medicines I take so even on the coldest days you will find me outside fanning myself. I've lived with this for quite a long time, that the symptoms are a second nature to me now.
I know how to read my body and the dangers that MG could cause me but still, I have days where I get scared, lots of them. Mostly the nights to spend with breathless chocking sensations and heat flushes. There are times I can't see what you do and I can't speak what you expect me to. But that doesn't imply I don't want to talk or meet you. I might just not be able to do so....
Today is so beautiful and warm but I don't dare sunbathe because for some reason this makes my symptoms flare. That's okay, I don't feel I'm missing out. I cant sing my heart out or cant dance madly to my favorite tunes. I can't stress out on what I don't have or what I can't do or else I'd go crazy counting the innumerable things. Autoimmunity has made me sacrifice a lot but I cant let it do this to me anymore. I'm grateful for every day I see and for my family and friends around me. I still hold on to the hope for a cure and for a better future. For all of you who have MG, we have to fight a little harder for today if the day seems brighter at this moment, it definitely might not be the same the very next hour !!
It is complicated to explain others what it feels to survive and fight this invisible disability. Yes MG is a neuro-muscular autoimmune crap but the word "NEURO" doesn't make me a lunatic or a psychopath or an insane person with an unsound mind. The person thinking so is the biggest lunatic. Had you been in my shoes you would realize what this walk means. It gets difficult to get through it every passing moment. But it isn't impossible with the support of my lovely friends and a caring family. Thank you all n love you lots !! Will never be able to explain to you what have you all around means to me. And those who do not understand what MG presents to us...rather than commenting on someone with chronic illnesses or being judgemental for their "not so normal" life, or accusing them for being over sensitive and emotional - just thank God that you or your loved ones have not received this unexpected surprise gift from God....
A big salute to all the Warriors fighting MG and other chronic illness !!
You are the courage personified 😊
You are the embodiment of HOPE
Choose to keep going and choose to spread awareness
