A Story of Illness, Love & Redemption.
Who knew it was possible? That someone could love me. And not just a fleeting romance. But the type of love affair where they get to see who you REALLY are and yet still make you porridge the next morning.
You see I’ve got Chronic Fatigue Syndrome and my type of Saturday night excitement is a DVD and a warm cup of Rice Milk Hot Chocolate.
I’ve got Myalgic Encephamyelitis (M.E) and when I get funky on the dance floor, it’s usually semi naked in the comfort of my lounge room.
I’ve got Fibromyalgia, and my version of a cardio workout involves a leisurely stroll to the shops to buy some Epsom salts.
And yet I rose upon the currents of Love to the highest highs. I gave my heart to another and I saw in her eyes that she had given hers to me. I became one half of a whole. I had conquered one of the greatest fears surrounding my illness! The ability to love and be loved! But I’m getting ahead of myself. Allow me to set the scene….
It was spring in the city of Melbourne and I was free, single and usually in need of a nap. Recently returned from a world tour in search of healing (visiting doctors, shamans and every thing in between) I was committed to working full time on creating the conditions for good health. I had resigned myself to a year of solitude, after all, when you only get 2 hours of good energy throughout the day who has time for a job, let alone a girlfriend?
Thankfully cupid saw things differently.
I had agreed to meet a girl from Indonesia and show her around Melbourne for the day. She brought a friend along. A French girl recently arrived in Australia with long blonde hair, perfectly molded cheeks and the type of smile that made you wonder what was really going on beyond those shining green eyes. Her name was Solene. And I suddenly had a desire to brush up on my French….A week, 3 salsa moves, 2 dates and 1 chocolate croissant later I very politely asked to kiss her. She was lost for words, which naturally I interpreted as a resounding yes.
Now within the first hour of meeting this glorious girl I had made sure to let her know that I wasn’t 100% healthy. Words to the effect of ‘I have troubles with my immune system and need to rest a lot’. All a part of my upfront, honest yet slightly mysterious approach to breaking the chronic fatigue news to potential girlfriends.It wasn’t until after we had spent our first night together that I went into a little more detail.
This first night together was quite a hilarious affair. It wasn’t what you’re thinking. No fireworks. No waking up the neighbours. Solene had proceeded to jump into my bed (Woohoo!) but decided to sleep as far away from me as possible (Not so good and difficult in a double bed) fully clothed (Disaster!). And so I jumped to the most logical conclusion. She was a good Catholic girl and I was about to spend a very celibate summer in the presence of a Chaste European Goddess.
Yet we still ended up in each others arms the next morning, her head on my chest. And that was when I built up the courage to explain that in fact I had been unwell for over 6 years, that I had what is known as Chronic Fatigue and whether I liked it or not was going to be taking it very easy over the next year.
I cringed, peering nervously to gauge the exact extent of her repulsion. And yet to my great surprise in her happy go lucky way she simply said ‘That must be difficult, but you’ll be better before you know it’ and snuggled in a little closer. As if I’d just commented on the weather. I breathed for the first time in over a minute and was reminded of the fact that although I may feel like a debilitated alien species on the inside, in fact, in the best way possible, I’m nothing special in the eyes of those around me.
I felt victorious. The relationship had cleared its first (imaginary) hurdle. Yet the persistent pessimist in me wagged its finger thinking that surely later down the track when it really hits home how restricted I am she’ll head for the hills.
And so began our relationship. Spending as much time as we could together aside from when I needed to rest. The best part of the whole equation was that we both discovered that we were just over grown teddy bears. By far our favourite past time was just lying around just cuddling. What better way for a CFS’er to spend his days! Cheap, cheerful and restful! My doctor would have been very pleased.
Now I’m not sure if this is usual or not. But I can distinctly recall the moment I fell in love with Solene. It was cold and grey outside. Boards of Canada were playing on my stereo. I lay in her gentle embrace when all of sudden something epic dawned on me. I was in love! And before I knew it, the words slipped out of my mouth like a slippery fish and swam into the unsuspecting ears of my captive prey. My lips found hers and we kissed passionately while a surge of electricity made its way through my central nervous system. I WAS IN LOVE (with a girl I was actually dating) FOR THE VERY FIRST TIME.
So set in motion a truly momentous love affair. Though it wasn’t all peaches and cream. We faced challenges. One particular week in winter saw Solene working on a pig farm in order to qualify for an extension to her Australia visa. Each day was very wet, very cold and very windy. And as it turns out she didn’t even have the strength needed to help move any of the pigs around the farm. So she just spent her days wandering around the farm in her cherry covered gumboots trying to stay warm.
Meanwhile, I was on a particularly heavy dose of antibiotics at the time and in each moment felt as if I were swimming through a giant wall of toxic jelly. Needless to say the conversation at night wasn’t particularly riveting. But the point is we got through it together. The burden of my illness was never too heavy for us to handle. Love will always find a way.
‘What about the sex?!’ I hear you politely scream. Naturally it presents a challenge for those of us trying conserve energy. But like so many aspects of a healthy relationship it comes back down to clear communication. In all honesty for the first few weeks of our relationship I was too exhausted most of the time to even consider a roll in the hay. Admittedly this severely challenged my concept of manhood. But it didn’t stop us being intimate. And it simply made those times when I did feel like Casanova even more fun.
Rather the greatest challenge for me was feeling like I was always holding Solene back. Not being able to spend the night partying with her friends meant we either stayed at home, which I often felt guilty about. Or she went out alone, which left me worrying about all the men out there waiting to prey on my lovely, not so innocent girlfriend. But this was less about my illness, and more about learning to let go. Plus the mark of true love is not having to spend every minute together. But allowing your significant other to grow in whatever direction they need to. Sometimes on their own.
Another difficulty was forgetting that I often appear quite healthy to those around me. I rarely mentioned when I felt like wet cardboard, so Solene had no idea that I was unwell so much of the time. My quietness could easily have been interpreted as grumpiness or disinterest when in fact I just had a killer headache and loved her company.
The fear which lurked deepest in my consciousness was the risk of some how passing my condition onto my beloved. While the doctors told me it wouldn’t happen, every time Solene sneezed a little part of me died, secretly thinking she was on the way down. But this was just paranoia. Do not let fear get in the way of true love. At the end of the day we’re all just squirming buckets of bacteria. And as long as not you’re testing positive for anything openly transmissible, I say ditch the limitations and passionately kiss the world with reckless abandon. After all who you interact with is only a part of the picture. It’s largely the strength of an individual’s immune system that determines when they become unwell. We all decompose at some stage, I’d rather do it in the arms of a Goddess than in the disinfected confines of my own Spruce Moose (Simpsons reference, watch this if unfamiliar – http://www.youtube.com/watch?v=_EjXtSRiTRw&feature=related)
Romantic Love and CFS/ME are not mutually exclusive. In fact they go together like hot gluten free toast and organic peanut butter. That is, very very well. So chew, swallow and digest any limitation you might be placing on yourself. Pick up the phone and call whoever came into your head while reading this article. I dare you.
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