Lassitude, my GP called it in his letter to the specialist at the time of my diagnosis. Please see Sharon for her hepatitis C. Symptoms include lassitude. I went home and looked it up in the dictionary.
Lassitude: n. a state or feeling of weariness, diminished energy, or listlessness.
The truth was the word barely touched the edges of how I was feeling. It was 2003, September, and while I was happy to have an explanation for what I was experiencing, I was exhausted and very afraid.
I knew nothing about hepatitis C but I sensed my life would never be the same.
Six months later I saw the specialist and decided to go on treatment. I learned I had genotype 1 which meant 48 weeks of combination therapy. I was pleased I was able to access the new ‘pegylated’ interferon.
I was completely unprepared for what was to come. I got reclusive and depressed but I persevered. Completing treatment was one of my proudest accomplishments.
During my treatment I discovered a peer-support online forum. I became part of a community of people who were going through treatment too and feeling much like I was.
The friendships I formed then remain strong to this day.
Four months after I completed treatment, in October 2005, I saw my specialist to review the results of my blood tests. I’ll never forget hearing his words. “It doesn’t look good” I didn’t understand what he meant at first because I had never contemplated the possibility of a relapse. Sadly, a PCR confirmed the virus had returned. I was devastated.
I relied heavily on the support of my friends on the peer support website to get me through the difficult period that followed. I didn’t know how I would be able to recover and create a new life that included the virus. I saw counsellors and social workers and I slowly started moving forward.
One year later I had a liver biopsy which showed I had level 3 fibrosis with ‘pre-cirrhosis.’ That scared me and gave me the motivation to make some necessary changes. I stopped drinking alcohol completely and changed my diet. I made the decision to minimize the stress in my life. My health and outlook improved remarkably.
In 2007 I joined the board of my state hepatitis council. I work part time at a Needle Syringe Program, distributing sterile injecting equipment to drug users to prevent the spread of blood-borne viruses. I am involved with a positive speakers’ bureau and have attended hepatitis conferences.
I was right; hepatitis C has changed my life. I have over the last few years forged a life with a quality I couldn’t have imagined at the time I got the news I had relapsed.
As for the lassitude, I still get it, but it’s manageable, most of the time. I take care of myself and the virus behaves.
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