When sven met CFS.

I didn’t pay attention to my health, even slightly. I was driven by my art and nothing else mattered.
I was thirty-three when I got Ross River Virus. It’s a nasty little mosquito-borne virus that can cause severe joint pain, fatigue, and fever. I called it Malaria’s little brother. It’s not as nasty as malaria, but can be just as debilitating. Because I hadn’t been aware of my health for a long time it took quite a toll on me straight away. Ross River virus can hang around for a long time and have recurrences for years and this is what happened to me. It quickly turned into rolling fevers and fatigue. It was 1995, and everything was about to change for me. The same year that my daughter was born. 

…if she had a bleed, she’d be dead in four minutes

My partner had been diagnosed with placenta previa grade four, the most severe form of the condition. This meant that if she were to experience any bleeding, it could be fatal within just four minutes. She spent the next seven weeks confined to her hospital bed, closely monitored and cared for by the doctors and nurses. My daughter had to be born caesarian and three weeks early as my partner was not allowed to go into labour. If she did she would die. It all had to be highly controlled. So much for our idea of a hippy-home birth, but I digress. As a result, my partner was understandably postnatally depressed and had a big caesar scar to show for it. That will be a story for another time though. 

‘go home and rest’. Rest? Rest? What’s that?

…and I had Ross River Virus. I was also the breadwinner and holding down a very good, but unnecessarily stressful job. The job itself was stressful, but I was also a serious stress-head. I just wasn’t coping with anything at all and I was sick. It wasn’t a pretty combination for anyone. Initially, when I went to the doctor to find out what was going on and we figured it was Ross River, she said, just ‘go home and rest’. Rest? Rest? What’s that? When can I rest? So, I didn’t. I couldn’t rest. My resting state was stress. I didn’t know any different. On top of that coffee was my favourite substance. I consumed way too much coffee for too long. I was wired from morning to night. 

I wasn’t enough. I couldn’t do enough. I couldn’t be enough.

I kept going. Kept pushing myself with with this mad idea that I had to be everything all the time. But I also kept failing all the time. I wasn’t enough. I couldn’t do enough. I couldn’t be enough. I couldn’t look after myself. I couldn’t look after my daughter and my partner and the relationship. It was thoroughly unpleasant for all concerned. In my self-absorption, I was blind to the toll my illness was taking on my family. I was too exhausted and overwhelmed to see the pain they were experiencing.

I just ignored the virus and tried to keep going.

As Time went on the rolling fever of Ross River Virus continued on pretty much a monthly basis. Once a month I would go into a fever for about five days – sometimes seven days sometimes three, but it was almost as regular as clockwork. Every month I’d have a fever that would take me out of action and send me to bed. At this time I didn’t cook. I didn’t eat junk food much and I did have some small awareness of trying to eat well, but it was all over the place as far as consistency and quality. Effectively, I just ignored the virus and tried to keep going. As time went on though, my energy reserves declined steadily. I started looking to see if there was anything I could do about it but just kept coming up empty-handed. No, Ross River Virus can’t be cured, it will burn itself out eventually. In those early days of the internet, reliable health information was hard to come by. Doctors knew bugger-all about Ross River Virus. I felt like I was groping around in the dark, hoping for a miracle cure.

Some doctors simply don’t believe it exists at all.

By this time the virus had morphed into Chronic Fatigue Syndrome (CFS). Once something debilitating settles into the body and continues to drain energy consistently, the body becomes very tired and very heavy. It takes a lot of effort to do even the simplest thing. In the end, it’s easier not to do anything. It saves what small amount of energy one has. CFS is a complex diagnosis of exclusion, where other conditions are ruled out before this label is applied, often leaving patients feeling unheard and dismissed. So, that’s what it must be. That doesn’t help though. Some doctors simply don’t believe it exists at all. Others suggest, just go and have a good rest. Take three months off and you’ll be fine. 

it will suck the joy out of whatever life you have

Nothing happens quickly though. It’s a bit like pushing through mud. It all happens very slowly and takes a lot of time and energy to get a diagnosis, to get an acknowledgement, to get a pathway to treatment. Treatment? Oh, did I tell you? There isn’t any treatment. There is no ‘cure’ for CFS. You just have to muddle your own way through it. It’s unlikely that it will kill you in its own right, but I can tell you with absolute surety, it will suck the joy out of whatever life you have.

I had my head very firmly buried in the sand.

Weeks turned into months and months turned into years. After four years of struggling with the virus and its aftermath, my partner reached her breaking point and decided to leave, taking our daughter with her. My partner had had enough of my poor efforts to be a partner and father and my poor efforts to look after my well-being better. I was still failing all round and not doing anything about it. I was in denial, refusing to face the truth of my situation and the toll it was taking on those around me. Like an ostrich with its head in the sand, I was blind to the devastation I was wreaking on my own life and others around me. I don’t know what I expected. I hoped for a magic bullet. Something that would come along and make it all better. But mostly in life such things are just fantasies. 

“It feels like a truck parking your foot”

I tried massive vitamin C injections. They were amazing. The needle is the size of a horse needle. The vitamin C injections were an exhilarating rush, a sensation akin to warm lava coursing through my veins, offering a temporary respite from the chronic pain and fatigue. It didn’t work tho. I did feel better, but it didn’t make it go away. I tried acupuncture from a woman who enjoyed getting the needles to ‘work’. Not so much to inflict pain, but intense sensation. One that I recall her describing as, “It feels like a truck parking your foot” and boy did it ever. That’s exactly what it felt like. Very intense. I got to enjoy and look forward to my acupuncture sessions. I felt like I was doing something towards getting better. In the end, it was like the vitamin C injections. I felt better, but it didn’t solve the problem either. Despite the initial promises, these treatments were only temporary relief, offering a fleeting glimpse of what wellness might feel like before the reality of my condition returned. It was time to face the truth—that CFS was not so easily defeated.

Stay tuned for the next thrilling instalment in my journey through CFS.