Not Adequate

I need to write tonight as I can't sleep and want to just document what is going on. I don't think anyone reads these posts anymore so Im not writing to anyone but just need to get some thoughts and feelings down on paper in hopes for some relief. If you can't handle raw emotion or someone who is trying to work through things emotionally, please stop here and don't read.

There is no way to back up and catch up on here all that has happened since I last blogged. This frustrates me but is what it is. I feel I am going backwards and down hill. I feel that after 15 years of this disease wreaking havoc on my body it is now taking my mind. The last couple weeks it has really become more and more evident just how non functioning my mind is becoming. Tonight I came home from my attempt at handbell practice feeling so inadequate, unworthy, incapable, and the list goes on. There were some comments made tonight to me that hurt my feelings extremely and just emphasized my feelings lately that I bring nothing to the table, I have nothing to offer. All I have ever longed for was to be useful and used by God. I feel I have passions but am unable to do anything about them. It frustrates me that He would give me these passions, desires, longing, strong feelings towards things and then not be able to do anything about them. It is so difficult to look normal but have nothing inside me be normal. I am so tired of others expecting me to be normal when there is nothing inside able to function normally. I am at a low spot tonight feeling so inadequate as a wife and a mom and as a person of society. Why am I here? It is abvious I don't bring anything to the table. I feel I do more harm then good. My opinion, feelings, ideas, don't matter. I'm expected, as the sick person, to have it all together, react, feel, function, fix, love, forgive, act, all normally.
Tonight I had the urge to go out to the office and burn all my music. I can't teach it anymore, I can't play it anymore, share it with anyone, it doesn't appear to share any part of my life anymore. Just get rid of it and call it done. This is one area where I feel God has given me such a passion but I can't do anything with it. I can't teach it which I so thoroughly loved! I have tried to teach my own girls but get things all mixed up. Things I have know for over 30 years. I hear a song and it just touches my soul and I love worshiping through it and then I have a desire to share it in church hoping it will encourage others to worship and go deeper. I don't like "performing". But I love sharing. But I can't. I have sung (I am not a professional singer-my voice designed just for God's enjoyment) and I have played and sung in church twice. All by the grace and leading of God. But I feel I am just tolerated or pitied and that it did nothing to bless God or encourage anyone else to worship Him. I am a perfectionist which makes this disease even more dibilitating because I can't be "perfect". This last Christmas we gave gifts of ourselves or gifts that represent our family, what we like, who we are, etc. I gave a cd to a chosen few of my piano playing, not because I am cocky and think I'm great or worthy of a cd, but to share and bless those who got it. I would rather ask for them back then have it sit in homes completely unlistened to and or judged. I felt led to do the cd, I thought I was being obedient (I was actually led to do it many years ago but didn't and thought I better put something together now before I can't at all) and it was a risk to put myself out there. I won't do it again.
I don't read anymore. I used to enjoy reading, including my bible. But because I don't process very well, I don't understand what I am reading most of the time and I can't keep information straight and I can't retain it. I try screaming out or reaching out or try telling people that I don't remember things and I am laughed and belittled because they have moments just like mine. I don't process conversations and I sure don't remember them. I don't put two and two together anymore and all this has effected relationships because people don't understand and they take it personally, even though they know I am sick, that I didn't remember something or put two and two together or I stare blankly at them while in conversation as I don't comprehend or compute the conversation.  It is completely frustrating!! I feel like I have brain damage and I feel with each passing day I lose more and more. I have prayed so many times in my life for God to spare my brain, even through this disease, that He wouldn't allow it to take my mind, please spare me my mind. I try to do things to keep the mind working and I have seen where doing school with the girls has kept parts of it from being completely gone but it still doesn't make up for what doesn't work. There is no guarantee that if the digestive system ever does "kick in" and I start absorbing nutrients again that my mind will bounce back and recover...any of it. I've been waiting for 2 1/2 years for a corner to be turned and things to start healing and recovering. I'm losing hope it will ever happen. I don't possibly see how this benefits God, or brings Him glory when I can barely understand His word and wanting to study it but feeling so frustrated in doing so.
I never thought, and no one would understand this unless you have experienced it, that losing my hair would have such a profound effect on me. But it is emotionally debilitating to take a shower and see locks and locks of hair fall out. I can't even begin to explain how it has effected me and yet with each hand full of hair that rinses off my hand and falls to the drain, I feel bits and pieces of me are going down the drain, figuratively and literally.
Its a daily battle to function. To just get up and be what I need to be for my girls and debilitating to go to bed at night knowing I have failed again and again in being what I need to be be for my husband and for my girls. There are days, like yesterday where it looks like all I'm doing is laying on the couch being lazy playing on my phone and yet its all I can do to be up and all I can do is push a few buttons on my phone. Don't ask me to make decisions...I can't. Don't ask me to do anything...I can't. But simple games on my phone...at least there I might accomplish something...how pathetic is that. How I would like to accomplish a camping trip with the family, or dinner most nights for my family, bible study, or a book to read, or a scrapbook, or wait....a clean house once in a while where my husband doesn't have to look for clothes on the floor or in a basket in the laundry room.  It is depressing to think of how I used to be and how I am today. I used to manage a classroom of kids (choir....big classes). I used to teach private piano. I used to keep a clean house with laundry done weekly...not just washed but put away for everyone. I used to keep a clean kitchen. I used to cook and plan meals and was able to grocery shop. I used to be able to multi task without frustrations or feeling overwhelmed. Now I feel like a 4 year old that is easily over stimulated with one task and get frustrated if you vie for my attention at the same time I'm trying to focus on that one task. I used to have a great memory...not my husbands by any means ever, but a great memory.  I could remember names and I didn't have any problem remembering what I was headed to do and my checklists weren't to remember things but to mark off the many things I did. Things don't get marked off my lists any more.
My how things have changed.  But I am just like everyone else. Everyone experiences all this so I am supposed to feel normal and better about it all. I guess everyone else is able to handle it better then I can. I am so thankful for the friends I do have that have stuck with me through these last 3 years and have encouraged me and supported me and not given up on me, judged me enough to have nothing to do with me but have stuck it out and loved on my family.  It may be the glue that God has used to hold me together.  But there is no way I could have gotten this far without God and the husband and two kids He gave me. I just wish I had more to offer them and I continually pray for God to guard my kids from my short comings and inabilities.
My crying has slowed down and hopefully a lot of my thoughts are on here and won't cycle back and forth in my head too badly now and I can fall asleep. Nothing worse then a sick person who can't eat much and hasn't had enough sleep. I feel I am nothing, an empty shell and I don't feel God filling it to use it. Emptiness. Hollowness. Complete worthlessness. No where near adequate for anything. Complete failure. Maybe at some point the disease will take enough of my mind that I won't realize any of this and won't feel it anymore. Ahhh, what I don't know? Complete bliss.