At a Stand Still

This whole journey has been a struggle. For years and years, all I wanted was an answer to why I was in pain. I went to doctor after doctor looking for that answer. Now that I have it, I almost wish I would've never known. Nothing they are trying is working. I wake up feeling bad, I spend the whole day feeling bad, and I go to bed feeling bad. It sucks! I go to this doctor and that doctor. One tells me one thing while another tells me something different. Why can't they all just get together and do something. No person should have to go through every day of their life feeling this bad.No one should have to make every decision based on how it's going to make them feel. I should be able to play with my son, have fun with my family and friends. Do things that aren't going to make me hurt or things that may make me hurt but not be judged because I need a break too.

They change my medicines or try me on new ones. Still no relief. There comes a point in time where you just want to give up. I am at the point in all of this where I would try absolutely anything to have a break. I want to be able to enjoy my life. I want to be able to take care of my family. If it weren't for my support system, I would probably have already given up and checked myself in somewhere. I don't know what else to do. I don't know how to explain how I feel or how to get them to understand the magnitude of pain that I feel.

The seizure medicine is calming them but not stopping them. I have had 6 this week alone. They are so frustrating. I am sore and have scratches. The Chiari symptoms have become worse since my decompression surgery. I have the constant feeling of pressure in my spine, neck, ears and head. 2 months after surgery, the back of my head still kills me. Pain pill, muscle relaxers, fibromyalgia medicine, sea sick patches, what's the use. Every time I stand up, I feel like I am going to fall over. I'm sure people are going to start thinking I'm crazy when I stand up and just straight away have to sit down in some random place. I even feel dizzy sitting down. Something has got to give! The headaches/migraines are present constantly. Again, WHAT DO YOU DO?

The doctors finally want to talk to each other, but no one wants to talk to me. I am the patient. I am the one going through all of this. How about you let me in on what you are thinking. Don't wait until the last minute and say this is what we are going to do. I am sick of my health impacting everyone else. I can handle it for me, but it is unfair that everyone else should have to worry or plan around me. I question in my head all the time, Am I ever going to feel normal again? Am I ever going to be able to do things like a normal person? I spend just about all of my waking time thinking about this. I even dream about it. Of course, that is when I am actually sleeping! When I can actually get semi comfortable.

I just don't know anymore. All I know is that I have to find the energy somewhere to keep fighting for answers. Fighting for my life. Fighting for the lives of others. Try to make a difference. Try to get doctors to understand that just because someone looks okay on the outside, doesn't mean they are okay.