There are days where I can barely move, where I have to change my plans because of Arthur. Many days grocery shopping I have to lean on the cart for support. Those days are tough and it takes a lot to get through them but it is doable.
The worst of it though are the days where the emotional toll of living with Arthur gets to be too much. It’s more debilitating than the physical effects of this disease. I can get help with the physical – the fiance can do xyz for me when I am unable. But I can’t get him to quell the negative thoughts that I constantly have. No one can listen to my thoughts for me and no one else can bear that load.
I always talk about how lucky I am to have gotten ill when I was so young that I don’t remember ‘normal’ but that also means that all of these negative thoughts have plagued me for far longer than they should. An 8 year old shouldn’t be so depressed and overwhelmed with pain that they don’t want to be alive. I know that others have it worse, but it is so hard to deal with.
Thanks to Arthur, I have always been a fighter. It has been something that served me well my entire life. But there is a point where you get tired of fighting your way through everything. I don;t want to fight to make it through a work day or a special event or just to be able to breathe. I just want to be able to rest without worrying about what comes next, without thinking about how painful it is going to be when I get up or go to work or to therapy.
I need to take a break from Arthur, a vacation from my illness. Too bad he follows me no matter what.
What an honest and real picture of what this is like. I so feel for you and others who've suffered since childhood. This adulthood nightmare is enough to send me over the edge, my goodness…you are amazing!