Sunday, December 25, 2011

Christmas with Early Onset Alzheimer's

It's clear that I won't be having anymore "big girl" jobs, as I have often referred to my cool jobs and also to the upstart of Maxx V.  I am so very grateful for the opportunity to continue to wait tables at Mere Bulles. The owner and management have been amazing to me, not to mention my co-workers that have to work along side of me.  Yesterday was my first day off, besides Sundays in what feels like ages!  Of course they would tell you differently, as they refer to me as the vacation queen... But I honestly didn't realize how important going to Mere Bulles was to my reality these days.  It has become my normal, and I now see that when I don't have the normal, I am a mess.
This is my first Christmas since my Early Onset Alzheimer's symptoms have really set in.  And it is horrific!  Which is heartbreaking to me.  I have always tried so hard to focus on Jesus' birthday and the huge sacrifice God made, to send his son down to earth.  Knowing that once he was born, he would suffer so much pain and persecution, but that he would save us all.  I am so very grateful for His Birthday!  But my every breathing moment is so hard.  I mean, really hard, I feel like an elephant is sitting on my chest it is so hard to breath.  I know that it is anxiety, anxiety isn't new to me.  I already take medication for it, and for years it has stayed in check.  Now it is as if I have lost control.
I tried so hard to get ready for church this morning, but I am literally scared out of my mind to go. I had nightmares last night about how mean all of the ladies were to me.  So we decide not to go and then I am dealing with the anxiety of going to RB's family Christmas.  I want to go. It is so important to him.  But it is as if my feet are made of cement.
So now as to why I am having these issues.  I think it is two-fold.  One is medical, one of the symptoms is the depression and inability to really "care", based on what is working and not working in my brain.  I still have enough sense to know that those symptoms alone make me a completely different person than I used to be.  The super happy, cheerful, girl with the desire to serve anyone and everyone is gone.  And I would be an idiot to now know that other people have noticed as well.  Whether it is my loved ones pointing out my attitude to me, or friends who have bailed on me because I'm just not the same anymore.  I know that I am not good anymore. And I have always had an issue with unhappy people... Thinking that they should choose to wake up on the right side of bed instead of the grumpy side.  And now I am one of them.  I try so hard to smile and be happy, and then I am reminded that I don't look truly happy.  I am reminded that I am bringing others down.  So this is the second part of my anxiety issues.  I just don't feel good about being out in the unknown, and having people think that I am grumpy.  When I really am not, I am just not able to show happiness these days.  It is as if that emotion isn't connecting anymore.  I would give anything to have it connect... You hear stories of Alzheimer's patients being "flat" and "emotionless", and that symptom truly sucks, I can't say anything else about it.
So what I realize is that when I am at Mere Bulles, they know what to expect from me, and I am very comfortable with what I will get there each and every day.  But on days when I have to be around people who don't know me well, I am struck with the overwhelming thought...They are going to think I am grumpy and not nice.  Those are two adjectives that I am not comfortable with in describing me.  The only way to prevent that, is to not leave my house.  And that isn't very healthy either.  So what is a girl to do?
In my deep fear and anxiety, I decided to blog.
Don't worry, I am also journaling a lot.  And working on my book.  But I decided that if I can help one other EOA patient feel not alone, I have done some good.  So I will do my best to put this out there.  I feel as if I am being eaten alive from the inside out, and I wish I had someone to talk to that is going through the same thing.  Until then, I will send this out into the world wide web, and see if anyone finds me that understands where I am coming from.
Please don't mistake me as a bah humbug!  I am so very grateful for Christ.  I am grateful for my church and the opportunity that it affords me in the next life!  I am grateful for everything that this holiday holds!  But I guess it just doesn't show on  my face.  For that, I am sorry.
Merry Christmas to all!!!! Don't take anything for granted! Smile from the inside out, everytime you are given the opportunity!


  1. Kristy,
    I want to tell you how I felt and see if you feel anything like this:
    When I left Lonnie, something happened to me inside. I felt like someone had reached inside my chest and ripped out my heart. There was a void. It was stunning to me that in my brain I knew who I was and had always been. What my likes and dislikes are, but my heart was gone. No connection between what I knew in my brain and what I should be feeling with my heart. I even turned my back on God. I decided there may not be a God, and if there was, He surely must hate me to let me feel this way. I had to take anti-depressants to help my heart and brain connect again. I didn't trust myself to do anything, not even drive. I would be terrified getting ready for work knowing I had to drive there and face the traffic each way, but I did it anyway because I didn't want anyone to know how bad I was feeling. When I would go to sleep, I would be disappointed that I woke up. I wanted to just disappear. It is the worst feeling I have ever felt in the world. My whole world had crashed and I was traumatized.
    Are those some of the things you are feeling? If so, I am so sorry for you. It is miserable, and of course, we have to put on the "I'm okay" face for the world to see.
    I found in my Anatomy class that stress had so much to do with what I was feeling and that stress will break down your body from the inside out. Please research the word 'stress' and see if it fits your symptoms. We can be under so much stress and not even realize it. It can stem simply from guilt we have buried.
    I pray you do not have EOA. That's just not you!!
    Five years after I wondered if there was really a God, of course, because He IS God, and He loves us even though we can be rebellious children sometimes, like the prodical son, He PROVED to me that He exists and that He loves me.
    I know that He loves all His creation and that includes you. He holds you Kristy and He has the answers. God uses others to get His message out, and to help His children. I hope this has helped you, or at least made you feel not so alone.
    A short story:
    There were 10 people that God was visiting with. He told them to sit in a circle. Then He told them to write down all their problems. They did. He told them to put the papers in the center of the circle. Then He instructed them one by one to go to the center and choose which set of problems they prefer. As they looked through all the papers and problems, each one decided to choose his own set of problems, feeling that the other lists were just too heavy.
    The moral is; God will not give you more than you can bear. Life is a learning place...we never arrive at a perfect place, we just have to enjoy the journey.
    Your mom told me you don't like me and I do not know what I have done to make you feel that way. If it is something I have done, I am sorry and ask your forgiveness. If you just don't like my personality then I can do nothing about it. I am sorry to interfere but do so hope that this will help you in some way feel better because misery is nothing to make light of.
    Aunt Karen

  2. Hey aunt Karen, thanks for sharing. I went through those feelings during my first divorce, and it was awful. This is totally different, symptoms are way different, but still difficult. I hope you have a Merry Christmas!