Filmmaker
Active member
- Joined
- Nov 24, 2011
- Messages
- 76
- Reason
- PALS
- Country
- CA
- State
- Québec
- City
- Montreal
Hi everyody
This is the first time i post a personal thread on this forum.
My symptoms started almost three years ago, I was then 28 years old leading a very active life, which i was quite happy with, as a nomal young woman. first came headaches, weird kind of headaches, later i came understnad they actually were hemifacial spasms... ut hey I had never experienced such a thing so i didn't even know how to descrie them to doctors...
I was then living in Montreal, symptoms then moved to my back with burning sensations, but still docs coulnd't find anything wrong... I then came back to morocco to stay with my parents, with still no diagnosis ut I knew something deadly was going on in my body. As i was still to move ok, this was all put as psych thing, then as firomyalgia. despite me insistig that something more was going on, as all my medical exams were always fine, i was dismissed as being crazy. After maye 25 or more doctors, even my parent started being convinced that this was all in y head and that i needed to get out from my so called deep depression. So i just gave up and stayed home all this time, my symptoms kept getting worse and worse, every 3 or 4 months i'd loose more of my strength with unelievebale all over body pain and spasms, I begged God for death as soon as possible as i just couldn;t deal with so much pain. i tried every medication on earth with no result.
Then finally, few weeks ago, i received my als diagnosis, i have to say that now that my muscles all almost dead, the spasms are less painful, expet in my head. ..
I am now very weak, i can still walk few steps, and move my limbs but i feel i have absolutely no energy left and probably not along time to live. I have shortness of breath and i do;t want to get any oxygen as I'm ok with whatever nature has planned for me...
Now, I ll turn 32 in few months if i'm still here, and I am so sad for my parents, family, and I haven't even told my friends what is happening with me, i don;t know how to tell them that i'm going to die soon and that the young active friend they used to have is not there anymore... i don;t know how to say that, because I want them to remember the old me , this disease was never planned, not at my age... I also see my mother crying every day when she sees how i became, and i can see that my father has stopped living too, you have no idea how this is heartbreaking to me. it should be the other way around, i should be taking care of them...
I am also missing my filmmaking carreer which has stopped right on its tracks when i was starting to finally work on my own projects...
HOW do you accept this disease? I believe in God but i still don't understand why he did this to me? WHY? Do you really think God exists? do you really think we will go to heaven after this? do you believe in those things? I have accepted death but somehow i want to believe that there is sth after death because this whole thing is profundly absurd! because i will miss films, literature, poetry, music, food, all og those things i enjoyed so much...
Thank you so much for your time i now you're struggling as hard as me, I know thatb ut it's just so hard!
This is the first time i post a personal thread on this forum.
My symptoms started almost three years ago, I was then 28 years old leading a very active life, which i was quite happy with, as a nomal young woman. first came headaches, weird kind of headaches, later i came understnad they actually were hemifacial spasms... ut hey I had never experienced such a thing so i didn't even know how to descrie them to doctors...
I was then living in Montreal, symptoms then moved to my back with burning sensations, but still docs coulnd't find anything wrong... I then came back to morocco to stay with my parents, with still no diagnosis ut I knew something deadly was going on in my body. As i was still to move ok, this was all put as psych thing, then as firomyalgia. despite me insistig that something more was going on, as all my medical exams were always fine, i was dismissed as being crazy. After maye 25 or more doctors, even my parent started being convinced that this was all in y head and that i needed to get out from my so called deep depression. So i just gave up and stayed home all this time, my symptoms kept getting worse and worse, every 3 or 4 months i'd loose more of my strength with unelievebale all over body pain and spasms, I begged God for death as soon as possible as i just couldn;t deal with so much pain. i tried every medication on earth with no result.
Then finally, few weeks ago, i received my als diagnosis, i have to say that now that my muscles all almost dead, the spasms are less painful, expet in my head. ..
I am now very weak, i can still walk few steps, and move my limbs but i feel i have absolutely no energy left and probably not along time to live. I have shortness of breath and i do;t want to get any oxygen as I'm ok with whatever nature has planned for me...
Now, I ll turn 32 in few months if i'm still here, and I am so sad for my parents, family, and I haven't even told my friends what is happening with me, i don;t know how to tell them that i'm going to die soon and that the young active friend they used to have is not there anymore... i don;t know how to say that, because I want them to remember the old me , this disease was never planned, not at my age... I also see my mother crying every day when she sees how i became, and i can see that my father has stopped living too, you have no idea how this is heartbreaking to me. it should be the other way around, i should be taking care of them...
I am also missing my filmmaking carreer which has stopped right on its tracks when i was starting to finally work on my own projects...
HOW do you accept this disease? I believe in God but i still don't understand why he did this to me? WHY? Do you really think God exists? do you really think we will go to heaven after this? do you believe in those things? I have accepted death but somehow i want to believe that there is sth after death because this whole thing is profundly absurd! because i will miss films, literature, poetry, music, food, all og those things i enjoyed so much...
Thank you so much for your time i now you're struggling as hard as me, I know thatb ut it's just so hard!