I am extremely greatful I am alive. I am not greatful for the quality of life I am living. I am beyond lucky to have the unconditional love of my boys and help and support of my family. I do not feel lucky that my 7 year old feels he has to hold my hand whenever I walk so I don't fall. Yes there's always someone worse off than me but slowly losing the ability to be independent, always sleeping, barely being able to walk on my own is MY worse right now and I'd say it's pretty bad by any standards. I think God has overestimated my strength. I feel like shit, stop asking it's annoying. I am on a ton of medication to try and help, obviously they aren't doing much. And while we're at it I understand Tom, Dick, and let's not forget Harry have MS also and seem fine but every single case is different if they've tried it chances are I have too and it didn't work.
Now that that's out of the way lets go into some detail. I've been on Gilenya for a few months now and no symptom improvements, in fact things are slowly getting worse. Memory sucks, left hand mostly useless, right hand getting there, afraid to walk without a walker, wall or person to hold onto. I feel like Bambi taking his first steps when I walk. I sleep a good 15 hours a day and need more. Depression is not even the word to describe the lack of emotion and lonely/empty feel in inside of me all the time. Dr. Howard did not decide to do a brain scan which is fine cause I can wait to be inside that machine again. Everyone tells me about this and that to do and try, I do try it all to no avail. I appreciate everyone's asking about my health but it upsets me cause I have nothing new or good to say when asked. I beg please stop asking everyday, please stop with the unsolicited advice, and pretty please stop com pairing me with your aunts, neighbors, groomers brother.
I sound harsh and that's because this does not come from a happy place. I had an emotional year and that too takes a huge toll on my health. I keep it all in so no one else has something nasty or negative to say about it but I have problems besides the MS too people. Thank you for telling me how great I look and that I don't look sick. That clearly says to me "you are lying, you look fine." I'm not and I don't wish this on anyone. My heart breaks for those dealing with cancer, I've seen it first hand with too many family members. I've also seen some of them and other sin remission. Just cause I don't look sick does not mean my body is not screaming from the inside.
