confidence
About a week ago I was in a grocery store parking lot waiting for my dad. It was getting hot inside the car so I stepped out and looked around. I took a deep breath and felt the air brush across my skin. I couldn't help but think I shouldn't be here right now. If it were any other moment in the past few months I would be back at home lying in bed in physical agony. I thought I'd never see most of the outside world again, that my freedom was ended and that I would live and die remaining under the shackles of my disease.
And in that moment I looked up and in the back of my mind thanked God that I was still alive.
I'm not 100% of course, and highly doubt that I ever will be 100%, but I have to say that I'm finally making some progress. I've been under treatment for awhile now, have been on several drugs since last October (poor liver), so it's hard for me to know if I'm healing or if things are working. I've been thinking of asking my doctor to stop all of the drugs for a week just to see if they're truly having an effect or if it's just me.
Occasionally I'll have a moment where the dystonia doesn't affect me at all and I'll be able to function. We're still working on making that more often than not. The weather isn't helping my stress levels, and stress levels don't help the dystonia. The heat is making my condition more uncomfortable.
I really just need to gain my confidence back, the confidence to live my life, go to work, function in life with a disease. I have to constantly remind myself that I just went through the better part of a year bedridden and suffering and that I am not the same carefree, agile person I used to be. I didn't think I'd have a nightly drug regimen at this young age and am still cautious about testing my boundaries. I have to get used to living again.
And in that moment I looked up and in the back of my mind thanked God that I was still alive.
I'm not 100% of course, and highly doubt that I ever will be 100%, but I have to say that I'm finally making some progress. I've been under treatment for awhile now, have been on several drugs since last October (poor liver), so it's hard for me to know if I'm healing or if things are working. I've been thinking of asking my doctor to stop all of the drugs for a week just to see if they're truly having an effect or if it's just me.
Occasionally I'll have a moment where the dystonia doesn't affect me at all and I'll be able to function. We're still working on making that more often than not. The weather isn't helping my stress levels, and stress levels don't help the dystonia. The heat is making my condition more uncomfortable.
I really just need to gain my confidence back, the confidence to live my life, go to work, function in life with a disease. I have to constantly remind myself that I just went through the better part of a year bedridden and suffering and that I am not the same carefree, agile person I used to be. I didn't think I'd have a nightly drug regimen at this young age and am still cautious about testing my boundaries. I have to get used to living again.
posted by RJ at 10:42 PM
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