Many may wonder why I have not updated in so long. The short story is nothing and everything is constantly changing, and you finally give into the fact you have no control over your life because its constant, like water is fluid, that is how your life is, although it does not flow so well. But I will give you the long story to give more of an idea.
Last time I updated, my heart was not in it. I was not getting what I needed here at the time. But you know what ? Just when I think I dont need my blog, I do and here it is. So here I am as well.
I have not done an update since last November and while many things have changed, many have stayed the same. First I will start with the medical and get that out of the way, so that I can then get to the personal, which I think is by far more intesersting, well at least to me because quite honestly, my medical is the worse part of my life and I dont like to dwell on it any more then I already do, I mean I live it every day so how much more do I need right?
Thankfully I have not been in the hospital for a few months, but I do still end up there occasionally from infection, whether it be staph, Klebselia or some other foreign named infection I know nothing about other than the fact that it can make you go septic and almost kill you very very fast. Infection you learn is a part of this life, and you finally have to accept it whether you want to or not, it will be there at some point or another.
Not only is infection a part of your life forever, but so is pain, spasms, electric jolts, Not being included by other to participate in activities that all your friends can do because of your disability. There are so many things that you have to learn to live with, and the learning is what takes the longest, because just when you think you have control there is something hiding right around the corner new that you have to learn to deal with. Its an ongoing cycle that never ends, kind of like this blog. It could last forever, or as long as I live. That is what CES is, its uncertainty, never knowing what is next but just hoping and praying that somehow someway, you will find just a nugget of happiness that rarely comes.
I have to be honest and say the reason I have stayed away from my blog, was because it makes me cry, alot. Because I read it and I get angry all over again, and that is not good for me, not with everything I already deal with.
My feet are getting much worse, and some days its so so hard to walk. I hate that those spasms keep me up at night and they are now moving up my calves. I wonder if some day I will lose all function, but again its an unknown and no one has any answers for me. Yesterday was the first day I had gone for a walk in weeks because of another staph infection, and today I can hardly move, but that is the price I pay just to be outside. I decided to move to a new location to have a new start, stupidly thinking that would make some kind of difference, but guess what? I still have CES. I may have ocean views, live close to family, and anyone else would feel so lucky to be where I am, but its hard to enjoy with this hanging over my shoulder every day. Its almost like a tease some days, saying look at what you could have enjoyed, but you cant because you have CES, its just not fair.
I have also started to experience these really scary headaches. They are called Ocular headaches, and no one can tell me why I get them, but I never had them in my before life. They dont have pain, but what they do have are blinding flashes on my complete left side in both eyes, to where it pretty much leaves me with left side blindness. The only answer is to lay down and hope for it to stop. Sometimes I can get them under control quickly with medication, but sometimes they last up to an hour or more and are extremely scary, because even with my eyes closed I still see the flashing. I am told they are caused by nerves so to me, its another thing added to my CES symptoms.
I had my grand daughter over for a sleep over last week, and I was so excited. I had prepared the extra room especially for them, fit for little princesses, and it took me months due to my slow pace at getting things accomplished, and it was to be her first sleep over at my new home. Well right in the middle of us having fun, on came the headache and I was done for the night. I had to explain to her that Nana had to lay down, and her grandpa would have to play with her for the rest of the night. By the next morning my daughter had already picked her up, so that was it for me, a great big failure. The way I feel so often, like I am a failure because I cannot participate in the simplest of things.
There are other things that happen which may or may not be fair, but its the way I react to certain situations, and its the way they are in my life. Like take yesterday which is a perfect example. It was my anniversary with my husband (who by the grace of god is still here) and I cooked him a nice dinner (which if you dont know, that is another one of those things that is still difficult for me to accomplish because of pain). Somehow we got on a stupid conversation, where he told my daughter that he cooked the dinner with me, which was not true. I was so proud I had cooked him dinner and there he was taking the credit, stupid right? In a normal situation I would not have even reacted but because it is such a rare occurrence, and I have so few things to feel proud of, I got really angry, which started a huge argument between the two of us. He then (and I think he said it because he knew it would hurt) says to me " Look at all the things I have to do in my life to help you?", Wow really, were going there? He had just ruined this illusion I had that there were two people in my life at least who still seen me for who I used to be and not who I was now, but there you have it.
What is really amazing, is he could not understand how that comment hurt? How could it not? I guess I had blinders on for over the last 3 1/2 years, because for some reason I thought he could see past the CES, who was I fooling? Apparently, he might still love me, but he does not love CES, NEWSFLASH NEITHER DO I !!!!!!!!!!!!!!!!!!!!!!!!.
So Yea this is what has been going on with me, a lot of this, and it gets monotonous, to feel like you repeat yourself over and over again, yet nothing changes, and everything changes, where is the train stop because I want to get off now please. I would like to get a ticket back to my old life and be me again. You know what is the worst? The worst is when you are finally getting good sleep, and you are actually having a good dream, where you can feel a mans touch, you can feel your whole body and everything works perfect, and then you wake up :( You wake up and realize your still the same screwed up person you were when you went to sleep that is the worst, because it reminds you of who you were and who you will never be again.
Wow by all of this writing, it looks like I needed my blog as much as my blog needed me and hopefully it helps someone else out there as well.
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