Sick cycle carousel, part 2

Part one: Sick cycle carousel.

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
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.

22 February, 2002
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.

2003
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
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.

2005
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.

October long weekend, 2005
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.

November 2005
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.

January 2006
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.

March 2006
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.

August – September 2006
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.

November – December 2006
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).

2007
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.