We went out last evening to a concert.
Singer/song writer Liz Longley moved on to the piano to perform a song she wrote for her grandmother who has Alzheimer, "Unraveling".
As I listened I felt it could have described my feeling, those of my own daughter, those of my son.
"Mom I am afraid you are going to forget my name"
Mental discognizance, forgetting names/date or how to count change.
My son admitting he has been avoiding me, as it hurts, scares him it see my decline.
My own confusion, frustration at bouncing off walls, stopping at red light at now knowing where I was in my own town. Loss of stamina. ( In my situation I leaned it has been 'unmanaged chronic inflammation', change in treatment protocol.) I am sure that if I added up all the years in the 'Unravelled' stage.. I would total years of being in what I call the "Oh zone' (where/when I could not function.)
Thankfully persistence and determination have reigned with these symptoms to a great degree.
And it has taken years. We can only champion our cause when we are well enough to do so, to even communicate.
The song for me was so clear and put into words for me the "Unraveling" that occurs to mind, body and soul with the symptoms I have experienced and my family has lived with.
Unraveling
https://www.youtube.com/watch?v=rsyOQT9UBnc
*For new readers to the board: please know that not all SJS patients have these symptoms. And that where certain meds did not have efficacy for me, they do for the majority.
Listened to the song...wow. Thank you for posting!
You are a marvelously strong woman and your family should be proud of you.They are running scared now but when all is said and done and they get older they will realize what a blessing you were to them.
Truth be known, this disease has the propensity to strike each of us down. We not knot when or where. Slowly they are learning more about this disease and it will be eradicated only to be replaced by some other disease that is waiting in the wings. I am not being a pessimist but a realist as if you look back over the past centuries we have been struck down by some more simple diseases and the bigger ones keep showing up on the horizon. Frankly, I don't get it but maybe we aren't supposed to. Irish
Such a touching post from such a strong and wonderful woman. Thanks for sharing your feelings with us!
I just listened to the song. It's a well done song, and made me cry in my spirit.
susanep :)
QD
Thank you for sharing this with us. I'm really sorry to hear that things are so difficult for you just now, and pray that it's just a blip.
The song reminds me of my mum at the moment. She's struggling with her diagnosis of pulmonary fibrosis and very worried about her memory.
I'm glad I listened to it.
Kathyx