I haven't posted on my blog in a very long time. I promised myself when I started this blog that I wouldn't neglect it. When I started it in the depths of my illness, when I was the sickest I'd ever been, I found that blogging was therapeutic and cathartic but it was also hard. So I promised myself that no matter how busy or tired or stressed I was, I would make time for my blog. I knew it was good for me.
But I made another promise. I promised myself that I wouldn't let my blog become an echobox of self pity or whining or complaining or self-indulgent gloominess. I was going to write from a place of honesty but I was also going to write from a place of hope.
Lately, these two promises have been in competition with each other. During my winter break I celebrated my first Christmas with my illness. My first New Years. I had a hard time balancing my health and my strong desire to celebrate and live normally. I'm still having trouble accepting my new normal, especially during special occasions.
Returning back to school was very difficult. I am out of the wheelchair and I have a lot more independence than I did at the start of Fall semester, but I still get tired more easily and I still faint regularly. I can't drive. I can't run. I am not the person I was a year ago.
So forgive me as I take longer periods of absence. When I started this blog, I was determined to get healthier and stronger by committing myself fully to a regiment of exercise, medication, water intake, a diet, everything a doctor could think of. I am still committed to this life, but I have stopped making progress. Symptomatically, I have plateaux-ed. I have been sick for about a year. I'm not in crisis mode anymore, I'm not looking for a diagnosis or a cure. I am learning to live with the cards I have been dealt. Some days, I can play those cards happily but lately, more often than not, I struggle to find a silver lining.
As I move forward with big milestones and life changes that occur in all 20-something-year-olds' lives, my illness refuses to be silent. I have been lucky enough to stay in school and take an internship at the Maryland General Assembly part time, but my syncope has already interrupted my work and I'm now known as the intern in the State House who went out in an ambulance last week. I turned 21 years old this week but I'm too scared of my BP dropping to drink more than a glass or two of wine in my suite. I just ordered my class ring in preparation for my graduation in May, and immediately felt the dread of having to walk at the ceremony and worry about having an episode.
Everyday, my first thought when I wake up is about my illness. I wake up and try to gage how dehydrated I am before standing. I measure my blood pressure before getting out of bed. I pray that I won't have an episode that day. Sometimes, I wake up angry that I woke up. Then I get angry with myself for each of those thoughts.
I'm not where I want to be right now. No, I don't want to be chronically ill. But more than that, I don't want to be so bitter about it. I want to be happy when I see my friends getting accepted to grad schools, not angry with myself for putting off applying because my health is too unstable for that right now. I want to be able to picture life after graduation as a chance to open new doors, not a time when I'm faced with rows of locked doors with my illness as the guard. I want to feel connected to the people around me like I did before I got sick, not resentful of their lack of understanding.
So I have started going to counseling. I'm lucky enough to have access to counseling services on my campus and I've started going once a week to talk about the experience I have had over the last year. I'm not sure how my blog will play into this. I might be very open with the progress I make in counseling, but I might be very private. I just don't know yet. 10 months ago I knew that I had a long road ahead of me with improving my health. I knew that I would have a lot of new medications and physical therapy exercises and diet changes. I was determined to make the changes I needed in order to get healthy. Now, I know that I have a long road ahead of me to get myself emotionally and mentally healthy as well. I want to be able to share that journey with my readers, but I don't know when I'll be comfortable and ready to do so.
But I made another promise. I promised myself that I wouldn't let my blog become an echobox of self pity or whining or complaining or self-indulgent gloominess. I was going to write from a place of honesty but I was also going to write from a place of hope.
Lately, these two promises have been in competition with each other. During my winter break I celebrated my first Christmas with my illness. My first New Years. I had a hard time balancing my health and my strong desire to celebrate and live normally. I'm still having trouble accepting my new normal, especially during special occasions.
Returning back to school was very difficult. I am out of the wheelchair and I have a lot more independence than I did at the start of Fall semester, but I still get tired more easily and I still faint regularly. I can't drive. I can't run. I am not the person I was a year ago.
So forgive me as I take longer periods of absence. When I started this blog, I was determined to get healthier and stronger by committing myself fully to a regiment of exercise, medication, water intake, a diet, everything a doctor could think of. I am still committed to this life, but I have stopped making progress. Symptomatically, I have plateaux-ed. I have been sick for about a year. I'm not in crisis mode anymore, I'm not looking for a diagnosis or a cure. I am learning to live with the cards I have been dealt. Some days, I can play those cards happily but lately, more often than not, I struggle to find a silver lining.
As I move forward with big milestones and life changes that occur in all 20-something-year-olds' lives, my illness refuses to be silent. I have been lucky enough to stay in school and take an internship at the Maryland General Assembly part time, but my syncope has already interrupted my work and I'm now known as the intern in the State House who went out in an ambulance last week. I turned 21 years old this week but I'm too scared of my BP dropping to drink more than a glass or two of wine in my suite. I just ordered my class ring in preparation for my graduation in May, and immediately felt the dread of having to walk at the ceremony and worry about having an episode.
Everyday, my first thought when I wake up is about my illness. I wake up and try to gage how dehydrated I am before standing. I measure my blood pressure before getting out of bed. I pray that I won't have an episode that day. Sometimes, I wake up angry that I woke up. Then I get angry with myself for each of those thoughts.
I'm not where I want to be right now. No, I don't want to be chronically ill. But more than that, I don't want to be so bitter about it. I want to be happy when I see my friends getting accepted to grad schools, not angry with myself for putting off applying because my health is too unstable for that right now. I want to be able to picture life after graduation as a chance to open new doors, not a time when I'm faced with rows of locked doors with my illness as the guard. I want to feel connected to the people around me like I did before I got sick, not resentful of their lack of understanding.
So I have started going to counseling. I'm lucky enough to have access to counseling services on my campus and I've started going once a week to talk about the experience I have had over the last year. I'm not sure how my blog will play into this. I might be very open with the progress I make in counseling, but I might be very private. I just don't know yet. 10 months ago I knew that I had a long road ahead of me with improving my health. I knew that I would have a lot of new medications and physical therapy exercises and diet changes. I was determined to make the changes I needed in order to get healthy. Now, I know that I have a long road ahead of me to get myself emotionally and mentally healthy as well. I want to be able to share that journey with my readers, but I don't know when I'll be comfortable and ready to do so.
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