My Life in the Slow Lane

Every May I write a post entitled “Sick Cycle Carousel”, with an update on the year’s activities.  This page shows all of the Sick Cycle posts to date.

Part 1, 21 April 2007
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.

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.

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.

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.

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.

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 spiraling 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.

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.

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 2, 21 April, 2007.
After the watershed night on the beach, and the ensuing unpleasantness, life picked up. It was my rock-bottom. There was nowhere else to go but up.

2002 was, predictably, difficult. My health improved slightly one month then bombed the next. I was dealing with losing my best friend so dramatically (and publicly) and with the rest of my friends dispersing to their various tertiary institutions. The loss of everyday-friends was very depressing.

Luke was born that February. I remember the first day I saw him. I slunk out of the car, tired and down, and went into the house. His parents brought him out and handed him around, each getting their turn to hold the baby like a pass-the-parcel. When the music stopped and it was my turn I held him and looked down at his tiny face. Although he was asleep he gripped his tiny little hand around my thumb. I realised as I stood there holding him, that he was so vulnerable, at that point in time he was depending on me for his safety. I was struck by how much I loved this little life in my hands, after only knowing of him for nine months (and knowing him in person for all of ten minutes). I saw the miracle of God’s creation in Luke. I knew it would all be ok.

I wish I could say that from that moment on, life become rosier and more palatable. But it didn’t, at least not in a Hollywood-ending fashion. School continued and I attended when I could, battling exhaustion and an acute lack of motivation. The depression abated after some time (it was more a case of becoming hardened and numb than any actual healing), and I started to smile now and then. I graduated from high school in September, accompanied by Lynne and my family. Many teachers said “it’s about bloody time” as they said their congratulations. I sat the HSC exams and got a university entrance rank of about 72. It was proportional to the amount of effort I put into studying, so I was happy with it.

I had no clue as to what I wanted to do with myself after high school; the last four years had been consumed with finishing it so I hadn’t given a lot of thought to what to do once I got to that point. Without any clear aspiration to tertiary study I chose to take a year off from education (a “gap year”) and concentrate on getting better. My health picked up fairly dramatically in 2003, to the point where the fatigue wasn’t crushing anymore, but more of an ever-present, mild nuisance. I travelled down to Sydney once a fortnight to stay with Grandma, who looked after Luke on Mondays and Tuesdays and I visited Tía and my cousins often. I travelled to Melbourne for a week to stay with new friends who were involved in an ME/CFS charity and met many new people. Some of them were taking a somewhat experimental medication and they told me about it. I started taking this on the first of September, the first day of spring, and have been taking it ever since. The new medication took hold and I started to notice improvement. Spending so much time with Luke and my cousins staved off the depression until it was a mere bad-dreamlike memory. I was still taking anti-depressants, petrified of what would happen if I stopped.

2004 was similar. My health remained at a fairly static level of not-quite-fixed-yet. I still didn’t know what to do at university so I extended my gap year by another 12 months. I continued to see Luke every two or three months and became involved with an ME/CFS charity group, joining the management committee in May.

During 2005 my health took a dive. I became more exhausted and worn down and began noticing pain in my legs and back. I continued working for the Society and seeing Luke occasionally, usually once a month. As my health declined I was revisited by depression. It was often quite mild, certainly nowhere near as bad as it was in high school, but it did occasionally get bad. One night it did get to that low point and I cut myself again with a razor blade in the shower. This lasted for a week and ended when I saw the bloody cuts while getting dressed. It shocked and repulsed me. I couldn’t do this to Luke. I haven’t done anything like that since. I still have these scars on my arm, a constant reminder of that dark time. The pain became steadily worse and completely confounded Dr KHS. I asked him for stronger pain killers but he was reluctant to give them to me, since I was only 21.

I battled constantly with misconceptions. The FAL didn’t get the realities of my condition. I always put on a brave face and smiled at family get togethers. I resented their lack of faith in my word, they believed what they saw, not what I told them.

Cal and Lala took me to the north coast holiday house over the Labour Day weekend. I left my tablets at Tía’s, which meant that after the first day I began getting withdrawals. I could barely walk from the pain, barely stay awake for the exhaustion and ended up spending the whole weekend in bed or on the lounge. Cal and Lala took excellent care of me, bringing me tablets (over the counter pain killers) and breakfast in bed. It took two weeks to get back to “normal” after that.

I continued popping pills and eventually bought the walking stick in November. It served the dual purpose of supporting my pained legs by taking weight off them (and allowing them a chance to rest to some extent) and reducing pain as I walked. It also gave me something to lean on when I was exhausted and walking like a zombie. I was diagnosed with Fibromyalgia.

2006 came with little fanfare. I was staying at Tía’s one week in January when I got a phone call from Sister. She had found a new uni degree and was going to transfer. She was so excited about it and it was infectious. I started thinking that I would like to go to uni too. I started looking at mature age entry requirements and found out about the course at UNSW. I enrolled and got a place and began my tertiary career.

In early January, I came out to Liz, Lala and Cal in quick succession. I was so happy to finally be honest with them. My friendship with Liz, which had been on the backburner for the past year or so, became stronger and closer than ever. The acceptance of these three, whom I love and respect more than anyone else, buoyed my mood. I was finally happy.

The course was one day a week but it took a lot out of me, especially considering that I live on the opposite end of Sydney from the campus. After the first two weeks I decided that I couldn’t do all the travel in one day, it took me days to recover from it, so I asked Pop if I could stay with him one night a week to break things up a bit. He happily obliged. My health slowly picked up. I was still exhausted and worn down but I managed. I enjoyed my evenings with Pop and I know he enjoyed my staying with him. It broke up the monotony of life for us both. Towards the end of winter, Dr KHS finally relented and agreed to give me a new medication that would block the pain signals in my brain. It began working quickly and I was relatively pain free (certainly less pain than I had experienced in a long time) but the effects wore off after a few weeks. The dosage was adjusted and while the pain has not gone away, it has lessened.

The pharmacy that sells me one of my medications messed up my order, so I was without an important medication for 3 weeks. Like the Labour Day weekend debacle, these weeks were spent largely in bed. I bounced back fairly quickly. Perhaps this means that I am getting somewhere? I was still involved with the Society although I had less time to give them because of my school commitments. I decided to resign from the committee in November, so that I could concentrate fully on my school work in 2007.

Pop went into hospital in mid November. I knew what was coming, but I did not get depressed. I grieved the loss before it happened, and then felt guilty for thinking that way. I visited him at least every second day until the end. My health suffered, from all the walking and all the worrying. My world changed on the 3rd of December, the day after Liz’s birthday. I lost my hero. I was half expecting to go into a deep depression when he died, but I didn’t. After the initial period of being numb I started to grieve with such intensity that I didn’t know what hit me. This, of course, affected my health and I spent a good deal of time in bed during December. Christmas was a sombre affair; my legs ached and I was exhausted. But I enjoyed it, and drank a toast to Pop at 1pm on Christmas Day (a family tradition).

The rest is, as they say, history. 2007 brought entry to Sydney Uni and an increase in the pain signal-blocking drug. I was also prescribed a high strength anti-inflammatory drug which works wonders. Despite the odd pang of grief for Pop, I am happy. I am still in a lot of pain on a daily basis and I still feel run down a lot of the time but I am happy. I am content.

The night before Pop died, Dad said to him “Tomorrow will be a better day, Dad.”
“Yes,” Pop replied, “it will”.

And it still is.

Part 3, 26 April, 2008.
May will be upon us in one week. With May comes the nine year anniversary of my various illnesses and trials. Last year I wrote a rather difficult post, Sick cycle carousel, documenting the progression of my various conditions, depression, and to a small extent my coming out journey. Below is the next part in the Sick cycle series.

It seems that the ending of part two was a little bit too optimistic. Don’t get me wrong, I am happy (and I certainly was at the time I wrote that) but I can’t really say I’m all that content anymore. My back has been a lot of trouble lately, I’m downing drugs at an alarming rate, and I’m still kinda upset about Sister’s attitude in The Talk.

January 2007
After the loss of Pop, life was less sunny. I shepherded in the new year with Liz in a quiet ceremony with sparklers, champagne and Roger Rabbit. I spent most of January with The Beach Crew at Cal’s parents’ holiday house up north and on the Central Coast. My health waxed and waned, I was still popping pain killers left, right and centre, but for the most part I was excited at the prospect of starting at Sydney Uni in March.

February-April 2007
I turned 23 on the first and on the nineteenth we celebrated Pop’s birthday for the first time without him. Then I started uni and met a lot of really intelligent people who intimidated me very quickly. I had classes on three days a week, and as a general rule I was able to make the journey to Sydney at least twice a week. I did well in both subjects, gaining high distinctions in both. I enjoyed my time but the extra stress, walking, and sitting up took a toll on my already fragile health. Many nights I felt trapped, a youthful spirit caged up in an aching, ailing prison of a body.

I met Kate in March and we quickly formed a close bond. Within no time I began to refer to her as my sister, and her son, Lance, refered to me as Uncle Dan. Along with Liz, whom I consider my sister also, Kate is one of my best friends.

The day after St Patrick’s day I came out to Mum and Dad, which was, as you can imagine, a huge burden off my mind. After some initial teething problems, Mum came around; Dad didn’t give a shit from the start…finally I felt more myself in my own home.

May-August 2007
As the realisation that coming out to Sister was inevitable dawned on me, I suddenly suffered a bout of migraines at a rate of nearly two per week. Dr KHS, whom I started to believe was loosing his touch, advised cutting pain meds to see if they were the cause. Within a week or so I knew this wasn’t the case and went back to the normal dosage, however the migraines persisted.
As well as being migraine-prone, I found myself becoming depressed. The reason wasn’t clear at the time but with the benefit of hindsight I can see that it was all related to the intense sense of foreboding welling up inside me about Sister’s reaction. I sought shelter from the migraines and the depression in sleep. I was also struck at about this time that I forget how it feels to be totally healthy. Having been sick for eight years at this point, my last healthy memory was at the age of 14.

I came out to Sister on the 27th of May. We never spoke of it in any meaningful way for ten months. The migraines stopped soon after. The depression, on the other hand, continued. I felt trapped by illness and circumstance, hopeless, locked in a constant battle between my heart and my head.

September-October 2007
As the pain in my legs got worse and worse, Dr KHS switched the anti-convulsant (which I take as it blocks neural pain signals in the brain). I had every side-effect that the package warned against. I was nauseous, my knees were constantly inflamed, I was dizzy, spaced-out and all-in-all did a fabulous Anna Nicole Smith impression. I felt like a lab rat. The pain did go away after some time but the side-effects were way too much to bear. I couldn’t function at all and ultimately after a fortnight I switched back. The pain came back, followed by the vicious cycle of pain-drugs-nausea-sleep-pain. The high dose of pain killers left me in a perpetual haze. To add insult to injury I picked up gastro at some point.

I outed myself to the Family-at-Large by a rather cunning plan involving step cousins, the FAL’s natural propensity to gossip, and Facebook. Finally everyone knew and I didn’t have to lift more than a finger.

We sold Pop’s house. That was difficult.

November 2007-February 2008
I went to a neurologist; it was a waste of a morning. He was an odd little man and he told me nothing I didn’t already know. I did, however, get some stronger pain killers which made like a lot easier to deal with. I also changed anti-depressants from an SSRI (which I had been taking since the age of 17) to a tricyclic, which blocks pain signals as well as stabilising mood. I changed pain killers again and finally had a winner. CTs and X-rays revealed nothing. I started smoking weed to help with the stabbing pain in my back and shoulders. It helped too, it was a lot of fun in fact, but all in all no cause was found, nothing really helped in any permanent way… and so it continued. I struggled to get my head above water for a time but after I found my footing with the tricyclic antidepressant, my mood did eventually even out.

February 2008 onwards
I moved to Glebe into a house full of strangers. The Space Cadet makes life interesting. The Optimist and I are becoming good friends. The Guyanan and The Accountant I don’t have much to do with. Though my depression seemed to be under control, I was suddenly gripped with anxiety at having to fend for myself.

The pain in my back and shoulders continued to get worse; I continued popping pills (and have made a few faux-pas while under the influence…). As I write this, I am doped up and as soon as the effects wear off I will be writing again. Last night I got no sleep. I’m going to a chiropractor or physio on Monday. Someone has to be able to do something.

Life has to be better from this.

Parts 4 and 5 coming soon.