My physical therapist comes this morning and my Home Health Aide comes this afternoon. Not looking forward to the deep tissue massage at all.
I need to log this, I think. I've been doing my best to deal, cope and fight these illnesess. But something never hit me like it did last night. I've always thought having all of these illnesess as something that I'm going to just be alright soon, like the flu or a cold, or even maybe something like surgery could help. I've never thought negative about them. Just here we go again if I have a flare up, or I can't sleep because of the pain, ect...
Last night, I was just watching tv. and something hit me and hit me pretty hard. "I'm not going to get better!" No matter how hard I try to fight, I'll still have them. Just like growing up with a seizure disorder, it doesn't go away. I had two baby's and they also have a type of a seizure disorder as well. My doctor told me even if I had 10 kids, they all would have some type of it. I don't want my kids to go through this! And I'm already seeing some signs of the fibromyalgia in my son! NO! It doesn't work that way. "I'm the only one that suffers, not my own children!" This is hard to write through my tears. bare with me. I'm not going to get better, I just get worse! Or if a doctor can get me the right medicine...I'm only going to stay that way at the time I'm given it. Like maybe just to stop my body from progressing. But again, theres that chance that no doctor can even know. I've been there with my epilepsy. I have medicines to try to prevent the seizures, but I still have them and they can and have also gotten worse at a few times. Like when I was first diagnosed, I had gran ma seizures, then throughout my life, they changed. Now I have myoclonic seizures.
Thats what hit me last night. About with all of the other stuff that I do have now! Plus, I'm still getting tested for other things! Oh joy! THIS is not a pity party...it's just me thinking and coming to a realization that no, I'm not going to get better and the chances that my own children can get all of what I have are pretty high! I don't like the odds of that. I don't want my grandchildren to inherit anything as well. They are not to be in this kind of pain, or have to live a life like this...I'm the one! I pray that they don't. It's not fair for them that I have these, and it's very likely that they too might suffer as well and I don't like that! I'm suppose to keep them all safe and sound in their lives. Not pass bad things on to them.
That depresses me to no end. I'm not going to get any better and the possibilities of them inheriting this is pretty high!
I've had other things on my mind that has lead to this. I cheerish life and always have. I used it all up every day with my children! I had so much fun with them and still do. But I won't be able to give that of me to my grandchildren. This isn't fair and yes, I know life isn't fair. I fight so hard to stay out of a wheelchair and by doing that, it makes my body worse! If I have a good day and I do things, it makes my body worse! Yes, at least I DO have life but I still am grieving. If you only knew how much I miss dancing and hiking. Dancing more then anything. I hear music and I have to tap my foot or my hand to it, but the real me on the inside of this vessel wants to jump up and dance. My soul hasn't changed and my body has and it's so hard to except. When you're young, you don't think about your adulthood like this.
I'm doing my best to teach my grandson to be able to use both hands, because you never know what will happen when you get older. Thats what I can give my grandchildren, of course all my love but to know that life is only but a gift and to use it wisely. Make good desicions. And just live!!! Have fun! I will always be there for them like I am my children.
It hurts to know that you're not going to get any better but to stay the same. To bad I can't go and pick out a new body to hold my loving and caring soul. Just things in life that no one will ever understand the why's and the how's.
None of this probably doesn't make any sense. But it does to me.
I miss living and taking advantage of the days that I could run with my children.