Sunday, June 23, 2013

Tight Rope Walking

Being chronically ill is a constant balance between good days and bad days, happy days and sad days, rejoice and sorrow.

It's also a constant balance between knowing when to talk about being sick, and when to not talk about being sick.

When to think a new symptom is something bad, when to ignore a new symptom.

Well, let's just say there is a lot of balance that goes into being chronically ill, and it's not an easy game I tell you.

It's so hard to maintain your health, advocate for yourself to your doctors and peers, yet not get so into symptoms and charting that you become obsessive over your health.

Lately, I've been having an extremely hard time finding an appropriate balance in my life. I don't know if it's because I've been progressively getting worse or if it's because I have free time and have been focusing on the pain and symptoms because I have nothing else to do.

All I know is lately my life looks like this all the time:

This is an especially ironic photo since dysautonomia is a bad relationship between the brain and heart balancing each other out. It always feels like we are walking on a tight rope balancing every symptom without any help. 

Anyways, I've been trying to get off my meds because at this point we aren't sure if they are being helpful and they might even be hurting me. But I can tell you right now that they were helpful because I'm in such intense pain that it isn't even funny. I wake up every morning and I'm in so much pain I'm nauseous and almost can't do anything until I throw up. Then I'm dizzy all day and feel like I want to pass out, but never do, which usually helps because it kind of resets my body. 

But I've also been studying a lot about pain, while working on my thesis. I found this quote the other day that talks about perception and changing the chemistry of your body. 

I'm trying to go with this and trying to focus on the positive, but for some reason it's just making the symptoms be so much worse when they poke through. 

I guess I'm gonna call all my docs again this week and see if we can figure out what is going on. We will see.

But I am going to make a conscious effort to leave as much health stuff off my Facebook as possible. So if you aren't in one of my support groups, this will be your health update space. 

I need to separate some, and posting it on my Facebook page isn't healthy. So I'm stopping. Minus some random meme's and things like that. My Facebook will be chronic illness free. There will be happy things there. Most of the time. 

Because I need to get better at this tight rope walking thing. To find a balance that is good for me and my health. 

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