Thursday, 9 June 2016

I Hate ALS

My left shoulder is so painful today. I am about to take a couple of Tylenol, but stronger drugs may be in order by the end of the day. I think I may have damaged one of the bones in my left hand too. It's not broken, at least I don't think it is, but it sure hurts. All of this from a slipped transfer board while moving from my PWC to my manual chair.

Things like this convince me that I am becoming less and less safe in my own home. I am beginning to take seriously questions about falling or becoming immobilized. I'm not yet ready to capitulate to monitoring, but I understand more that need for it. I can see where it will be necessary at some point. I wonder how long I can live on my own. And I hate it.

I hate the fact that I am slowly and steadily becoming completely dependent on others for my life and living. I hate the fact that something as simple as moving from one chair to another has left me in such physical disrepair. I hate the fact that I am slowly losing all that I can do, having it replaced with the need for others to do for me. I hate the feeling of worthlessness which goes with this disease.

Perhaps the worst part of all of this is my increasing inability to do things on my own schedule. If I want to have a shower, I can either wait for home care on a Monday, Wednesday or Friday, or I can risk the transfer, something that is becoming increasingly dangerous. If I want to do something with my wine, I have to wait for someone to come over and lift the carboys for me; I am completely unable to make that lift. If I want to sweep my floor, make my bed, put away my dishes, get  something from the top shelf; all of these things are now beyond me.

I hate ALS.

No comments:

Post a Comment