The 9 Most Important Lessons I’ve Learned From CFS/ME & Lyme

Mr_miyagi

‘Chronic Fatigue has been my fiercest enemy and my greatest teacher. For this I am grateful.’

CFS/ME has shown me you just never know what will cause you to have those light bulb moments. Unless you're this lady of course. Looks like she's got a pretty straight forward system figured out....

During my journey with CFS/ME I’ve learnt a little about a lot. Through necessity I’ve become an amateur nutritionist, hack psychologist, compassionate counsellor and second rate gluten free chef.

But there are 9 lessons which stick out from the rest. And although I learnt them the hard way, they are insights I will have for life and have allowed me to become a more accepting, compassionate and significantly cooler person.

1. It’s ok to be sick

You’re not any less human, any less valid or any less worthy because you feel unwell. You are not a shadow of your former self. You are your new self! A self that will sometimes experience illness and other times health. Always the same beautiful, unique and original YOU. Sickness is just another aspect of the human condition. It’s a part of life. It’s not some Hollywood extra in the background, it’s one of the starring roles! 

2. It’s ok to be vulnerable 

 There are certain experiences that can leave you feeling exposed and vulnerable. Such as:

  • When you wake up after a long afternoon sleep with drool on your face and for a moment forget who you are, where you are and what your hands are for.
  • Or when you sit down on a park bench and wake up 30 minutes later realising you’ve fallen asleep in public.
  • And the most challenging of all. Looking deeply into a really good friends eyes when you’re exhausted and there is no where left to hide.  

Show your kitten neck to the world!

And what makes these situations even more tricky is that it seems to be in our nature to hide away our ‘weaknesses’ and put up a brave face for everyone around us. Something I’ve learnt is that more often than not this form of self defense often just adds insult to injury. That in fact it’s much easier to just be whatever you are. That taking a nap at the dinner table (preferably not in your soup) is perfectly acceptable behaviour, because often it is exactly what is needed.

In these moments I find it can be incredibley liberating to think of myself as a kitten bearing its neck to the world. Exposing my weak spots and letting be whatever will be. While it’s a little frightening at first, dropping the body armour and allowing myself to be vulnerable feels great.

 

3. Comparisons are fruitless. 

Our culture encourages constant and never ending comparison. But ask yourself what good ever comes of this? Usually very little. And when it comes to CFS/ME it’s very easy to slip into the pattern of consistently comparing our level of health with everyone around us.

I used to find myself constantly wishing that I was random people I would come across in my day. Like ‘that guy’ on the other side of the restaurant who was talking loudly and so must have been feeling well. I would watch movies and instead of focusing on the plot all I could noticing was how much more alive and vibrant everyone seemed compared to me.

I’ve found it helps a lot if you can ditch this thinking and realise that everyones journey through life is uniquely individual. Popeye put it best with his catch phrase ‘I am what I am’. Such profound wisdom from an overly muscled and ageing sailer.

The Hindus have a good way of overcoming the curse of always longing for the ‘greener grass’. They call it Karma. They believe everyone has a distinct bundle of experiences they must face in this life and it isn’t their job to envy or compare themselves to those around them.

Instead they focus on holding their head up high and accepting what ever comes their way in the most graceful and composed manner possible. I like this approach. So nowadays I remind myself often that truly, deeply and completely I wouldn’t rather be anyone else in the world….. Except maybe Justin Bieber. He can act, dance and sing. I mean come on.

 

4. Everyone has their own cross to bear. 

I’ve noticed that whenever I’m truly honest with people and share the unedited, uncut version of my journey with CFS/ME they often open up in return. I’ve been amazed to learn about the many challenges that people are facing in their day to day lives, the things they hide from the world. The chronic illness and pain. The depression and broken hearts. The grief, fear and anxiety. And ironically it seems in many cases that the people who appear the most overtly confident and in control are likely grappling with the biggest demons. 

Cross to Bear.

This has taught me that everyone has their own cross to bear. Sometimes when you’re living with CFS/ME it’s easy to feel like you’re doing it extra tough. And you often you are. But it’s liberating to remember that everyone around you has got their own unique challenges. While a broken bone or receding hair line may seem like child’s play to the chronically unwell, for many these problems may seem bigger than Everest. It’s all relative. So I take solace from the fact that I’m not alone in my suffering. It’s seems to be a central part of the rich tapestry of life…… I apologise but I simply had  to use’the rich tapestry’ saying at least once on this website. Possibly even again at some stage.

 

5 . It’s really, really, really hard to stop eating bread.

Sorry no insights here. Just the hot, crusty truth.

 

6. People can and will love you no matter what. 

This is an actual photo of me realising that I am worthy of love. I'll never forget that moment. And I'll always regret eating my lover in a tragic creamy mix up one year at Wimbledon.

This is the most transformational and definitely the most fun of all the lessons I’ve learnt along the way. It concerns Love. Not the friendly kind, or the divine sort, in this context I’m referring to Eros. The romantic kind of love that you may have felt the first time you watched the movie Grease.

At one time or another most of us feel that we’re unworthy of love. I’ve had countless moments where I’ve felt too sick, tired and brain dead to ever consider myself a worthy partner. Then WHAM. The right person drifts (or crashes) into your life and all these ideas get turned on their head. For me it was the most incredible experience because I discovered that when another person loves you it free you to love yourself.

My own love story can be found here.

And some tips for having a successful love affair with CFS/ME can be found here.

 

 

 

7. Suffering is a harsh but excellent teacher.

CFS/ME is like having Mr Miyagi on your back. It's heavy but can offer you a whole lot of wisdom.

Each day by facing the challenge of CFS/ME we are forced to become better people. We are required to dig deep and discover strengths we never knew we had.

In Australia, we call our wilderness ‘The Bush’. It’s a beautiful natural habitat that relies on intense fires every few decades to replenish the ecosystem and trigger the growth of new plants. This is one way to view CFS/ME. A consuming flame that transforms everything in it’s wake, leaving behind only the seeds of a considered and meaningful life.

Just for a moment look back and reflect on your journey with CFS/ME.  Against all odds you’ve done pretty well right? You have survived.In fact I’d guess that more often than not you’ve been an absolute hero. Well done! You should feel accomplished and proud.

Achievements come in many shapes and sizes but I think the most worthy (and under rated) of all is living with grace under conditions of extreme hardship. This is what CFS/ME teaches us to do.

 

 

A symbol of Hope... About to be eaten by a baby gorilla.

8. Hope makes you happy. And it really does spring eternal. 

Hope is like an opiate. It makes everything alright again! For me hope is the difference between being happy or sad. When I’m having an off day it’s often because I’ve secretly lost the feeling that everything will be ok. No matter how down I feel, hope can pick me up and put me back in my dancing shoes. And the best thing is there seems to be an unlimited supply.

The trick is knowing how to find it. For me it’s all about reading other peoples miraculous recovery stories. The ones where they return to to health against all  odds. There are literally thousands of these to be found in books and online. So that’s one a day for the next 10 years or so. By which time if I haven’t healed naturally I’m certain the Robots will fix me. There’s hope in action! For more examples here is an article I’ve written further exploring the importance of balancing acceptance and hope.

  

9. You must help yourself before you can truly help others and the world. 

This one can be tough. Especially for the Mums out there. And while your passionate heart may disagree it makes cool, hard sense to ensure you’re healthy before spending all your energy on helping others. After all, in the long run you’re a lot more use to your loved ones and the world when you’re clear headed and ready for action. An old teacher of mine used to say if you want to make a difference in peoples lives you must learn to become a ‘Sustainable Change Agent’. Someone that can first sustain themselves, then share that stability in ever expanding circles of influence. So take the time to heal and rest. You can save the planet tomorrow. I promise it will still be there when you wake up.

 

Aeroplane Safety Lesson No.101 - Look out for your own lungs before little Johnny's. He'll thank you for it later on.

Got an insight you’d care to share?

Leave comment and put a smile on someones face!

Where to Next?

Here’s a link to an article detailing 6 of my favourite recovery stories.

Or have a chuckle at this hilarious CFS/ME Youtube Xmas clip.

 

4 Responses to The 9 Most Important Lessons I’ve Learned From CFS/ME & Lyme
  1. Jonathan
    July 2, 2013 | 11:52 am

    Amazing. Powerful. Thank you

    • Joe
      July 8, 2013 | 7:42 pm

      Thanks Jonathan.

  2. Georgie
    May 12, 2014 | 9:10 pm

    Thanks so much for writing!!! Terrific :)

    • Joe
      August 8, 2014 | 8:21 pm

      Thanks Georgie!

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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!