Love in a Time of Chronic Fatigue (A True Story)

Flamingo Love

(With apologies to G.G Marquez)

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.

 

 

Got a Love Story you’d care to share? Post a comment below and share the love.

 

 

Where to next? Why not read Tips for Having a Successful Love Affair with CFS/ME?

15 Responses to Love in a Time of Chronic Fatigue (A True Story)
  1. Christiana
    May 9, 2011 | 2:17 pm

    Oh wow, this is wonderful! I found your link on the “healkick” support group forum. I can’t even tell you how much I enjoyed reading this and how much it has put me at ease. This is something I can read again to remind myself that I will fall in love one day despite illness. I think you have really good advice and congratulations with your beautiful love.

    • Joe
      May 12, 2011 | 3:14 am

      So happy to hear it Christiana. If this post does inspire you to find true love all I ask is that I get invited to the wedding. Or at least have a piece of the cake sent to Australia :)

  2. Claire lagan
    September 11, 2011 | 6:16 pm

    Loved this story! After a relationship break up due to chronic fatigue three years ago I have remained in voluntary singledom ever since (and not due to lack of offers!). I feel like so much less of a person and regularly tell people I have nothing to offer. Because of the CFS I feel like I would just be a burden to someone and they would eventually give up on me. But everybody has their imperfections and after reading this maybe I’ll dip my toe in the water and see what happens…

    • Joe
      September 12, 2011 | 12:09 pm

      You have every little part of your heart to offer Claire. So don’t dip…. Triple back flip spin dive with a twist of lime! And if you belly flop, then so be it. At least someone will get a laugh out of it and you’ll float back to the surface with a smile on your face to realise that just being in the water feels great. Just remember to invite me to the wedding!

    • sharon
      March 19, 2012 | 1:20 am

      Hi Claire so pleased to hear I’m not the only one to loose love due to CFS mine is way more recent and tears still sting my eyes. Albeit I have resgined myself to singledom and my 3 beautiful children :) Maybe one day in a very long time we will all find the love that you have Joe a very beautiful journey!!!

      • Joe
        April 14, 2012 | 4:39 pm

        Ahhh the ups and downs of Love!

        Hope you’re back on your horse Sharon, who knows what charming prince awaits you around the corner…

        CFS is SEXY. Who else learns to wear bed hair as well as we do?? Don’t let anyone tell you otherwise :)

        Joe

  3. Ayurveda for CFS/ME
    October 5, 2011 | 9:33 am

    […] Want to read an inspiring CFS/ME Love Story? […]

  4. Julie
    January 22, 2012 | 2:42 am

    I write a newsletter for Worcestershire ME Support Group (UK) and would be grateful for permission to include this wonderful and inspiring story in our January/February issue. I have been looking for a positive “Valentine” story and I believe this is perfect. I have M E (amongst other things!) and found myself smiling continually as I read your piece – I would like to pass the smile along, if that is ok? Thank you for the smile and laughter (irrespective of your decision) – it is greatly appreciated.
    😉

    • Joe
      January 22, 2012 | 4:02 am

      Hiya Julie,

      Thank you for your kind words. You’re very welcome to include the story in your newsletter. Hopefully it inspires a few ‘fireworks’ come Valentines day!

      I’d appreciate if you could include a brief link to the website in the article.

      In the name of Smiles everywhere!

      Joe

  5. Julie
    January 23, 2012 | 1:13 am

    Thanks Joe, much appreciated and no problem re weblink.

    Title, websource, author, date of access & date of work are included automatically – is there anything else that would be helpful to include? Would you like a copy of the newsletter when it is finished?

    Thank you once again. Take care.

    All good wishes

    Julie

  6. Jemma
    September 3, 2012 | 2:51 pm

    Let me add to this positive feedback..this is a great story Joe! you have wrote about the one thing I have been worrying so much but the one thing I haven’t yet wrote about myself!

    My situation is very complicated…however much of what you say gives me hope. I have just found someone special in my life, who has already expressed concerns/worries about how my illness will effect the relationship. Among-st all the cuddles and kisses I sense a black cloud descendant upon such a special and precious thing. I guess only time will tell. One of my biggest worries like you is that I will be the cause of holding someone I love back….but also (as we are at the very early stages) that when the penny drops and realisation of how ill I am comes into full view that special person who I have become so fond of will vanish… your story gives me some hope that it just might make it through the storm, I just got to keep my cool!! x

    • Joe
      September 25, 2012 | 10:44 am

      Hey Jemma!

      Awesome to hear from you. Thank you for opening your heart and sharing your love story. I know exactly how you feel. My own strategy has been to just expose it all (my illness that is…) early on so they know the deal. So far so good for me. All relationships require compromise and in my experience our condition appears to be just another version of that. I reckon the trick is to find a cuddler, some one who values that time snuggled under the blankets as much as that time ‘getting jiggy with it’.

      I’ve just recently befriended a woman who has CFS/ME/Lyme and she is also in a loving relationship of 3 years. We talked about the ups and downs of it but both agreed although it’s a big risk putting your self out there and sometimes pushing through your energy limitations for your lover, it’s worth it.

      So bring on the black clouds I say. Nothing like a good dance naked in the rain!! And the sun always comes out to play again :)
      x
      Joe

  7. Robert Heinlein
    February 17, 2014 | 5:39 pm

    m 47 South Africa
    Lyme disease.
    I am really interested in meeting women interested in the possibility of a long-term partnership.
    Any dating sites anyone can recommend for CFS/ME or related?
    numeratereader@gmail.com

  8. Sue (43) - UK
    October 19, 2014 | 1:11 pm

    Hi,
    What a lovely story to stumble upon.
    I have CFS and have recently taken myself out of the ‘dating game’ – for all the fears already talked about.
    This has given me food for thought to reconsider. I am just three weeks off work, my goal at present has been to recoup in order to return. Dating is so emotionally and time intense … but I have begun to feel a bit hopeless, as I know that in my heart I value relationships over a career.
    Thanks everyone for sharing so intimately. xx

    • Joe
      December 10, 2014 | 5:42 am

      Thanks Sue! Hope you’re already madly in love :)

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About
Welcome! I'm Joe and my vision is to empower people with the knowledge they need to take control of their health. I was diagnosed with Chronic Fatigue Syndrome (CFS/ME) in 2003 and recently added Lyme disease to that diagnosis in 2012. I'm on a path to recovery and I invite you to join me..... P.S. It's best to never take anything I say too seriously. In fact I reckon it's best to never take anything too seriously!