Sick cycle carousel

This time of year marks the eighth anniversary of contracting ME/CFS. I don’t know an exact date because it crept up on me, but it was around this time in 1999. Every year at this time I reflect on my life from that point, on my history of depression and illness and the progress (or lack thereof, as the case may be) of my life. Like all good histories, this is a long and complex story. I have tried to edit it down as much as possible, but I couldn’t get it any shorter. I’ve divided it into two posts, each describing life on either side of a watershed moment in December 2001. It’s a disturbing story in many ways, but ultimately the ending is happy.

1997
The story actually starts two years before the official starting date. In 1997, I had a bad bout of what I thought at the time was the flu, but what in fact was an acute case of glandular fever. I was in bed for a week or so with a fever and all manner of unpleasant symptoms. At around this time my friend Calla was very sick with ME/CFS. I would dutifully visit her every Wednesday after sport, sit on her bed with her and chat for a few hours and then go home. I felt I understood what she was going through; I had no idea.

Autumn 1999
Around the middle of autumn 1999, I noticed that I was getting tired all the time, feeling run down and I had the odd pain in my legs. Dr KHS was dismissive: growing pains and flu he said. “Rest up and it’ll all be ok” he told me. I rested up. It wasn’t ok. I took weeks off school at a time. Upon my return, my friends were overjoyed to see me. At that time depression was another major problem I had. Looking back, I think it was partly unrequited love for a girl I was in love with and who treated me like dirt, and partly chemical. I never told my parents about the depression.

July 1999
In July, I crashed in a fairly spectacular fashion after a church weekend. Again I was feeling tired and rundown. I didn’t have any pain, but I did have headaches, dizziness and general malaise. Blood tests were ordered by Dr KHS, who was confident that a few weeks of rest would fix my troubles. Blood tests revealed that I had had glandular fever two years earlier, so he ordered strict rest while at home and minimal exertion at school. I was allowed to attend every second or third day and didn’t have to participate in sport. I sat the school certificate exams in November and passed, by the skin of my teeth, despite attending only a third of the classes. I couldn’t visit Calla as much and I reflected sombrely that I was now beginning to understand how she had felt all this time. I learnt that you can never truly know this illness unless you live it.

I met many new friends during the church weekend. The only friendship that has endured is my friendship with Liz, whom I now consider my best friend. When I first met her I thought she was a little strange but that quirkiness quickly grew on me. Liz has never known me without this illness; she didn’t expect me to get better and go back to the way I was. She accepted me the way I was, and for that I love her fiercely.

2000
As it was becoming increasingly clear that I was not getting any better with rest, Dr KHS diagnosed me with post viral fatigue syndrome. This is medal jargon for we don’t know what the fuck is wrong with you syndrome. I am ashamed to admit I was happy in a way. I wanted some attention for once and now I had it. After discussions with the principal, it was decided that I should attend school part-time, doing half the subjects of my cohort. Although my symptoms continued to fluctuate, 2000 was an ok year. My depression subsided and was promptly forgotten about. The crushing fatigue continued in waves and my memory problems developed. Peripheral friendships became strained, but my best friend Lynne’s devotion to me never wavered. A new member joined our little group, after being kicked out of his former group (such is schoolyard politics). We quickly became close.

2001
This year brought change. My subject load consisted of year 11 subjects with another cohort. My health continued to fluctuate between states in which I was barely-functioning and not-really-functioning and I was diagnosed with ME/Chronic fatigue syndrome. My friendship with the boy grew stronger and after he got his driver’s license he would come around to visit me when I was sick in bed. He’d sit on the end of my bed while I lay there, barely able to move for the exhaustion, and chat. We were close; he was kind to me. Slowly I started falling for him.

As my symptoms ebbed and flowed, so too did my depression. I became increasingly depressed at the pitiful state of my life. I was confused about my feelings for this boy and fed up with being stuck in bed so much. It got to the point where my happiness depended on his presence. When I was sick in bed and he came to visit, my mood would instantly brighten, only to take a dive when he left. This all came to a head in May when he promised he would come over and then changed his plans at the last minute. I sat in bed, crying, and took a pocket knife to my wrists. I wasn’t trying to commit suicide, although I thought about that daily; I was trying to purge myself of these thoughts and feelings I hated.

After having reconciled, I expected things to get better but he continued to disappoint me. In hindsight, his actions were perfectly justified and without malice; it was my perception of reality, warped by depression, which led me to be disappointed. I knew my depression and constant thoughts of suicide (something which I kept well hidden from my parents and friends, in general) were spiralling out of control. I was very ill, often in bed or, if I was at school, I walked like a zombie. I was still cutting myself regularly. I knew something needed to be done but I didn’t know what. I was only 17. I called my friend Brian’s mother, whom I knew from the church youth group, and asked her if she would be at church on Sunday. She said yes and I told her I needed to talk to her about something.

June long weekend, 2001
I was exhausted that day but I went to church because I needed to tell Kathy my truths. After the service she caught my eye and smiled a smile which said “ok Dan, what’s on your mind?” I walked towards her and she led me outside with her. We sat on the ground and she said nothing, waiting for me to begin. I told her everything. She nodded sagely as I told my story of exhaustion, depression and dependence on the boy. She drove me home and held my hand as I told my parents about the depression and the cutting. Dr KHS started me on anti-depressants and my moods slowly evened out. I had a psychological evaluation the next week (I was diagnosed with moderate depression) and went to see a counsellor. The counsellor was, for the most part, totally useless. I didn’t feel it was getting anywhere so I stopped going. I started smoking as a way to deal with stress and depression.

December 2001
The watershed of my depression, illness, and life in general came in December 2001. I went to Byron Bay for schoolies with my group of friends, even though I was still one year from graduating. On the first night everyone who was over 18 went out, leaving me, the boy and his girlfriend alone in the house. They snuggled on the lounge and watched TV and I seethed quietly, my depression and jealousy bubbling away below the surface. I took a full bottle of vodka to the beach and downed three quarters of it in the space of half an hour. That night, after being “rescued” from the beach, I told him I loved him (I was convinced it was platonic, but now I know better) and that I hated him when he let me down all the time.

He didn’t speak to me again after that week.

Part two.