Zero Value

I am up late because, this blog was meant to help me clear my mind, share what I am thinking with others, and hopefully help people deal with some form of chronic illness. I often feel drunk, or high even though I am not. I have a hard time balancing and my day can start off really well and end so badly. I wake up and struggle to move. I take a bath and brace myself because closing my eyes under the water has become a nightmare. I forget what I am doing while I am doing it. I struggle with spelling and many other basic things like dates, time, etc. I look at my 6 year old son and often question my ability to teach him. I try really hard to be logical and to show my intelligence. I often fall short of myself. I know I am no longer me. I used to feel so empowered just being me. Now I feel lost and often alone even though I know better. I tell my hand to make things happen and sometimes nothing happens or they seem to do what they want. I tell myself to get up and move but my legs fall short in their ability to hold me up. My cognitive ability is super low. I smile often though and struggle through each day thinking one day I may not smile. I look at my son and ask myself how far gone I am and how much further this will take me. While I can do anything I am focused on doing all I can to get as better as I can get. At the end of the day I am scared. Scared one day I will hold no value. Right now I have limited value. I cannot help with an income. I cannot help put food on the table or pay off debts. I know trying to get a job means I am asking for the employer to accept me on so many grounds. At the end of the day I know they will not be able to. I look for other ways to bring in money and always fall short. I never feel like I am doing enough. Like I am not enough. I feel like a huge burden and a waste of space. Which is funny because I have so many people who love me and say none of it is true. If it is not true then why do I feel this way. I was not always like this. I worked...and hard too. I took care of everything I could. I did my best to be a good mom and wife... and if I was why am I so alone now? Why do I value at zero. No one goes through life thinking they will have no value. I had so many desires, hopes, dreams. I wanted to be someone and to do something. In all of this somehow my family, friends, and even strangers seem to love me. They seem to want me in their lives. So the point in this blog is so people can see that even when life is hard...there is more. I will be ok. I may not ever be the old me but, I can embrace the new me. I can make this work. I cry sometimes but it's ok to not be ok. I just have to keep going. A wise man once told me that the only real difference between sane and insane is perception. Mind over matter. It is what you do with how you feel that hurts or helps. Of course he said it in other ways but to be honest I cannot remember how he said it. the meaning behind it stuck and I am sure he could say it 100 times more perfect. I like to put pictures up with each post this time I have no real lead on what to put here so I'm wingin it... A wise woman once told me "fake it 'till you make it" so here is a shot of me and my dad.

My Pepaw

I know that when I was a baby My Pepaw was thin and able to walk. I do not remember it but I see pictures of him. What I do remember is when I would sit on the floor next to his wheel chair and play games. It is a pattern of course gaming was a big part of my life I was a 90s baby so games were the up and coming. I remember oreos and Dr. pepper. At a very young age Dr.pepper was also a big part of my life. I remember visiting my grandparents and my parents did not seem to like the habits I picked up. I remember sneaking out of bed late at night to a light nudge at my feet. It was Pepaw with his finger to his lips beckoning me to get into the Dr.pepper and Oreos to bring them out while he got the t.v. ready. We would stay up really late and wake up really early to spend as much time as we could alone together to play. I also remember him chasing me through the house in his chair doing his best to scare me with his teeth. To be honest during this time my Memaw was not as vivid a memory. My Pepaw was the only thing I could see. I loved him with all my little heart had. When I was 10 I was visiting my mom and something told me he was not here anymore. Sure enough my mom came in and did her best not to tell me what was happening so that I could fly out calmly. I knew though I was not upset. I took it rather well. It hurt but in my mind he was happy and able to walk again. I have never responded to death like most people and I still do not grieve with tears. I did it my own way and in my own time. I did many times in my pre-teens and teenage years cry but mostly because the house was so quiet without him. I cannot imagine a life without these memories. Seeing him and loving my Memaw and my Pepaw gives me strength to push on. Life is not easy for anyone. The best thing my grandparents showed me was not to judge people. Having them has opened my eyes to so many things and helps me with my son and him having grandparents.

My Memaw

My Memaw had so many illnesses and functioned well enough to care for my Pepaw (who had a seizure and was in a wheel chair. She is someone I look up to. I loved her with all of my heart and she always seemed so proud of me even when I made mistakes. She had 3 children and lost one at a young age. To me being half the woman she was would be a feat. I miss her very much. I remember her watching me play games. She would buy them and set them up and watch me play. It was a big part of my life. Christmas was her favorite holiday. She would decorate her yard so well and always went overboard. She always sent us home with a vehicle full of stuff. I saw her twice a year and enjoyed every minute of it. When I got my GED she gave me her SUV it was a God send and I still remember how it felt driving it home. My son called her MiMi and she loved it. I remember when she bought me my clarinet and sent me to private school. She made me feel so special. She would not have me going to the local schools.

She had Lupus and diabetes and may have had other issues I was not aware of. I never saw her cry and I never saw her not want to push on and live. I loved food at her place and enjoyed cakes and she always made sure no one went hungry or left without eating. She was great with technology and always wanted the newest thing. When she died I started getting sick...When I feel like I can't do it anymore I think of her and it helps. The best thing in my SUV is a recording that holds her voice. I love listening to it. Sometimes it hurts but it makes me feel closer to her.

Best friends

My son is really attracted to Autistic children. This becomes more apparent as he finds his own new friends and I talk with their parents and as I guessed their child is in some way Autistic. His best friend Azrael is Autistic and they are inseparable. I love watching them play and I love listening to their conversations. It really makes me wonder how much my parents paid attention even when I thought they weren't. Here is a shot of the boys.

The are pretending to be in an orchestra. Azrael is super smart and they share traits now they are like brothers. This is a good thing sometimes and a bad thing other times. They beg to be together and get upset when it's time to separate. They fight and sound just like two brothers. It makes me happy because they are both only children so they need this plus My son has always wanted a sibling. Auron catches good traits like going potty on his own. And bad traits like squealing.  Me and Azraels mom are also best friends and we have both admitted to telling our kids when they are away from each other that they are not the other. Her Dog and my dog are best friends too. This has created a great family away from family lol. It's hard to explain.

How my chronic illness affects you

Lately I have been noticing that my illness isn't just about me. It affects those close to me but it also has an affect on other people who don't even know anything about me. I get asked all the time if
I am actually sick or if I really need the cart I am in. People pass me quickly sometimes almost knocking me over because I am slow. I cannot for the life of me control my emotions and paranoia and so I get upset and I yell whether I mean it. I cry for no reason so people think they hurt me whether they have or not. My head is so hard to navigate. I feel like because I can do somethings I am crazy but then I am quickly reminded it is not all in my head. I made shirts I would like to order a few to wear when I go out but I haven't.

I am just now aware that I spelled affects wrong and to be honest I am not sure which is correct. I know I was not always like this and every day I wake up less myself.

Home school and Home school

So, I am in school as I believe I have mentioned before. I have an AA in business and I have 4 more classes till I have a BS in Medical Administration.  It can be really challenging because understanding what I hear and read is often difficult. My son is also home schooled. This can be difficult and some people become perplexed that I am willing to do this. I have a lot of help and my son does not like being away from me. We went to sea-world for a field trip. This is another good reason him and I are home schooled. It gives us a freedom to spend time together. Real talk: (I'm scared one day I won't be able to do these things. As it is I had to use one of those motorized carts.) He had a blast and it was nice to watch him enjoy himself. I took a lot of pictures and at the end of the day Auron, Geega, and I were more than done. I felt like I had walked the whole day. I enjoyed it though. As for my school even though it is hard I do it in hopes that the VA will pay me due to my GI bill which they rarely do. I will be done soon though. I love being able to spend all this time with my son and watching him learn. sharing his milestones with other people.