Sunday, May 08, 2011

taking it each day at a time

well, I've made huge strides this last week in uncovering information on my diagnosis. www.dinet.org has a very extensive list.
I stumbled upon the list as I was looking up doctors and possible treatments, and halfway through reading the description of my diagnosis (Neurocardiogenic Syncope or NCS) I started crying hysterically. It shocked me how strongly I was reacting to this, so I made myself think about why it would be so emotional for me.
As I began to think back at all the times I've passed out, or almost passed out, or felt sluggish, or felt like I was swimming through water just getting from room to room, I was overcome with deep loneliness, and with fear. the loneliness and fear, the gnawing questions of wether I was delusional, wether I could somehow control this but wasn't, the sense of alienation (nothing is less cool that blowing your first big concert trip with your youthgroup by being sent to the hospital for 'epilepsy' during the show)
This condition has defined my life in a very scary way. It's hard to describe the sense of futility in going to yet another doctor, or E.R to hear yet again that I probably was just dehydrated. (hmm, even passing out at the dinner table, right after lunch?) It's humiliating to see the doctor start asking questions about your mental health, based on your physical symptoms. You feel very alone and unsafe. I realized I was crying so hard because I had never really thought I was sick. I had always thought I was inadequate. If my roommates could go to work with a cold, why couldn't I? If I pushed myself, I ended up on the floor, sometimes vomiting, sometimes not. I'm very happy with this diagnosis. It's stepping out of darkness into light. It's creating intelligent speach out of rambling sylables. It's allowing me to be a normal person with NCS, it means the insecure, scared little girl, can be insecure and scared and not have to hide it anymore.
It also makes me angry for the years I did lose. Those years are covered in confusion, hurt, and allot of fear. I felt like I was running around with a big OFF switch on me, but I couldn't see it, and I didn't know when people were going to hit it, or life, or...
I spent allot of time working on my self esteem, but now, the things I told myself not to believe ARE true. I am broken. I am limited, I can't do many things I enjoy. And I recognize the maturity in this process, and welcome it, but I also see the time it will take, the hours spent just in removing the bad work, and replacing it with good things.
My personality tends to be all or nothing, I can't live that way anymore. I either exercise hard, or don't. now I need to learn moderation. in everything. at which my mind screams 'BORING!!!' I want to push myself, challenge myself. but now I have to be gentle with myself. I don't approve of gentle. It takes to long.
but back to the blogging: I've already heard from one person who lives in my area and we are trading info. I've found some blogs of women who are in similar situations. all three are unable to work, unless from the home, and then only a few hours a day. I will not be discouraged by this at this point. I've overcome this in the past, and I will in the future. These women are all married and have significant help around the house. I'm thinking of hiring a student to clean for me, considering I also have pretty bad dust mite allergies, and need to be cleaning every week. something I've not been up to yet.

I am working hard on staying present with this, and not panicking. I'm trying to focus my attention on relaxing. Stress is the biggest trigger of all, and unfortunately, I run on stress. I have to retrain myself. I'm learning that I need to let people know what is going on with me, because I need community now. as frustrating as it is, I can't hold conversations on the phone for long, if at all. so blogging is an easy way to communicate.

I know this post is convoluted, I still am not done crying about this. so I'm writing, the crying, then writing. then crying some more.
Some of you have helped me through an episode. could you send me an email with what you remember? it doesn't need to be much, but whatever you have will help. I'm creating a document with my past medical history. and anything is helpfull.
for instance. One of the things to avoid is showering during the day. it drains my energy like noone's business. I never connected that to my condition, but it's one of the big things to watch out for. So now I don't feel bad about taking a shower right before I go to bed anymore. or skipping a day.
These are the things I'm learning to do again, learning to eat differently, learning to check each activity for stress before I do it..
anyways. plenty more to follow. Thank you all for responding to the last post. I can't stress how much hearing from you all means to me, even if I can't always respond.

1 Comments:

Blogger Ben Greene said...

Chin up lass, we're here :) Love you!

8:51 PM  

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