I was asked the other day how I was doing and my usual response was I’m GREAT! I have been making sure that I give a better answer than good or okay. I want to give people the impression that you can be something other than the normal at any given time. But when I looked at this person and remembered they were someone who knows me a bit better than the average person and she gave me that look like really..how are you? I thought a bit more about it and said I really am amazing! I have not had a true MG episode that has hospitalized me in well over a year. My last MG hospitalization was January 2015. And it was actually due to a virus that quickly became way more in the form of an intubation and respiratory pneumonia in less than 36 hours. Truly one of the scariest moments of my life. So to think that this was the longest since having MG I have gone without hospitalization and that I can now go 3 months without treatment is really amazing.
I thought after my first few crisis moments. I would never be able to travel again or be able to have a really normal life despite what people said because I was glued to medication and treatments and hospitals. They said everyone was different and mine form of MG was so severe and did not follow anyone else’s trend that I was worried I would never have any sort of freedom. It still does not follow anyone’s trend which is still a tricky thing but it is fine because I have come to embrace that and enjoy that I still get to have a life. I am stable and happy!
Granted I still have days where I am super tired and I am definitely over-worked some days it’s just all about balance and learning limitations. When I am doing too much, my body tells me and I have to learn how to accommodate that and adjust or I suffer greatly and that can mean a huge setback that I am not willing to sacrifice. So before that can happen I will cut back on the unnecessary things. This may not mean no worries for the rest of my days but it’s as close to it as I can get!