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re: How do you do it?by Hidden Light (no login)Sam,
I know its been awhile since your last message but I wanted to respond.
I am not as young as you are, but I consider myself fairly young I too started having symptoms in High School, Sophomore year to be exact. I did not have someone to be my advocate. I did not have someone who recognized something was wrong and attempt to find out what. The fact that you have someone who will fight for you is major. I know it may not seem like a big deal in the scheme of things but just that one factor changes everything for you.
I spent the better part of my life being called lazy, boring, messy, not motivated and disconnected. It was hard to have friends, boyfriends, any relationships really. My mom was beyond frustrated with me and I tried, God how I tried to be what everyone wanted and what I wanted too. I was always disappointed as were they.
So imagine physiologically how hard it is to accept after years of being told all the above...that your not. That you have an illness. Not easy. I struggle everyday with the guilt when I havent cleaned up after myself, or run the errands I said I would etc. I feel like that no good lazy girl. It is so hard to turn that around. Not only am I struggling with this illness, but add the physiological damage done to the mix.
Your mom saved you from allot of that. Not to say you wont meet people who think you are all the above because of their ignorance but you will know better.
Narcolepsy is not a understood illness by the general public. When people think Narcolepsy they think "Deuce Bigalo". And honestly, as scary as it is, most Doctors are right there with them. Its more known now, but its far from understood.
You mention your medication. To me, it doesnt sounds like its working. Dont stay on a medication if its not working. You have to speak up and tell the Dr. I know its disappointing when you get a new medication doesnt work out. Just keep trying. It gets better. Dont settle for a medication because it helped a little but doesnt anymore or has more bad side effects than good.
I would be lying if I said I have never thought "why bother". Honestly, I am not one of those positive outlook people. God is working on me with that. Some days are worse than others. Its a struggle. I was praying one night and I asked God "why bother? If im going to spend my life in bed, what is the point?" he asked me if the moments I do have on this earth that I am spending time with my family, that I am watching my son take his first steps, that I am blowing bubbles and racing cars worth it. Are those times not worth it? Yes, yes they are worth it. We may not have as much of the day as most people have, but we make the time we do have worth so much more.
Im sorry this is so long and I totally understand if you fell asleep a few times trying to get through it (I know I did lol) Hang in there. It is worth it.
Posted on Jun 14, 2012, 8:32 PM
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