This would have to the worst modelling job in the history of really bad modelling jobs. “Hmmm you have a particularly beautiful finger, please just hold it still while we let these potentially infectious Ticks crawl all over you…”

Most people asscociate Lyme disease with a bacteria called Borrelia burgdorferi that enters your system after being bitten by a tick.

However these days the term Lyme has been widened to refer to a whole host of different bacteria (babesiosis, ehrlichiosis, bartonella, mycoplasma) that can also make their home in your body. There is talk that the bacteria is coming from not only tick bites but also from some of our other little friends such as mosquitos and mites. It also appears possible that Lyme can be transferred from mother to baby at birth.

To make things simple for myself I use the word ‘Lyme’ as a catch all for different types of bacteria that enter your body after being bitten by an infected insect.

There is the acute type of Lyme that if caught quickly (within 6-12 months) can be treated fairly successfully with antibiotics. Then there is the chronic type of Lyme (when you’ve been infected for over a year) that requires a more complex and subtle approach. It’s worth noting at this point that the majority of the medical community is yet to recognise the existence of Chronic Lyme. Sound familiar?

How does it relate to CFS/ME?

The chronic version of Lyme has very similar symptoms to that of CFS/ME. Like CFS/ME it is also largely a clinical diagnosis which means that Doctors recognise the condition based on what the patient is experiencing rather than any particular test result. The treatment approach is also very similar, requiring a whole system approach which focuses on detoxification, immune support and reducing inflammation in the body. The difference being that once there is a diagnosis of Lyme it becomes important to focus more intently on ways to kill or pacify the bacteria that are causing trouble with the immune system.

From one perspective Lyme can be though of as a subset of CFS/ME. And as testing becomes more and more refined it will become clearer what percentage of the population of those suffering from CFS/ME actually have Chronic Lyme disease.

There are however some distinct symptoms that help to determine Lyme and it’s co-infections from CFS/ME. Visiting this website will give you a useful introduction to the illness and also lists the symptoms specific to Lyme and its co-infections.

How do I test for Lyme?

So now the fun part. How do you find out if your one of the lucky ones with spirochetes (Lyme bacteria) having a pool party in your body?

Historically the tests for Lyme have not been accurate. However recently it seems there are more and more viable options becoming available. These include the increased sophistication of PCR testing (particularly through RedLabs in Belgium) and the use of energetic testing such as bioresonance (Dr. Byron White) and Autonomic Response Testing (Dr. Klinghardt). Your average Doctor has yet to wrap their stethoscope around these last two but perhaps in the future they will become common place.

The lab Igenex in the United States seems to get the thumbs up from a number of well respected LLMD, but others say that these tests are as inaccurate as the rest. Have a look at the Testing page from betterhealthguy.com to get a feel for how many options are available and how it can be a bit of a journey to get a clear result.

Can you beat it? 

The short answer is yes. The long answer is ‘it’s a long journey’. There is debate over whether it is actually curable (i.e you completely eradicate all the Lyme bacteria in your system) or if in fact you just get it to a point where your own immune system can take over while you live a life with all the fun bits like sex, work, parties and marathon running.

Here’s what Stephen Harris MD from the US has to say:

‘Most of my patients need treatment for anywhere from nine months to three years, if they do everything right. If they comply with their treatment regimens, then most of them should get 90% or more better.’

And here’s what Lyme guru Dr. Burrascano had to add:

‘If treatment can be continued long term, then a remarkable degree of recovery is possible.’

Treatments on offer

There are 1001 different treatments available for Lyme disease. Like CFS/ME different things work for different people and everyone needs to work with a health professional, experiment and find out their own perfect combination. While there is alot of debate about the best course of action most tend to agree on 3 principles:

1. Reduce the Antimicrobial load (bacteria).
2. Improve detoxification.
3. Immune Support.

The big decision people become faced with…. Is it best to kill the bugs with pharmaceutical antibiotics or natural antibiotics? The trick with this decision is to take your time and assess all the options. Talk to your doctor, research other patients stories and above all listen to that voice deep inside of you (not your mother-in-law, the wise one that sounds like Morgan Freeman in the Shawshank Redemption).

Doctors to know about

Similar to the world of CFS/ME there seem to be a range larger than life of charismatic Doctors all with slightly (or radically) different approaches to treating the illness. I’ve chosen to highlight four here that have resonated most during my own research.

On the Holistic side is Dr. Dietrich Klinghardt & Dr. Byron White. These are both doctors that have successfully treated themselves for Lyme disease and have gone on to develop treatment protocols that do not rely on antibiotics.

Dr. Klinghardt is a German born physician who has trained in physics, psychology, medicine and most other things you can imagine to create a very unique and elegant system of treating chronically ill patients. He has the air of a genius about him and his German accent is very reassuring when he gives lectures and talks.

Dr Byron White is another pioneer who was unable to use antibiotics in his own treatment of Lyme due to allergies. He went on to develop a range of homeopathic formulas that are specifically designed to treat Lyme and a whole other hose of infections. Many people report great improvement using his approach and it appears he has created a viable alternative to pharmaceutical drugs for treating Lyme.

On the more Conventional side is Dr. Joseph Burrascano who was one of the first doctors to recognise Lyme when it became apparent in the US. He has treated thousands of patients over the years but sadly has stopped practising due to pressure from the US Medical board and Insurance companies who continue to question his treatment methods (along with the majority of LLMD’s) despite their obvious success over the years.

Another Lyme tour de force is Dr. Richard Horowitz. Also from the US, Dr. Horowitz uses a 15 point treatment plan taking a very comprehensive look at a patient’s symptoms and addressing the many different types of chronic infection and environmental illness. He combines antibiotic treatment with a range of alternative methods.

Where to Learn More

• There is a brilliant documentary called Under Our Skin which I highly recommend.
• Also the blog betterhealthguy.com is a wealth of clear, concise and very helpful information.
• And finally if you are looking into treatment be sure to consider the issue of biofilms and co-infections as they will have serious impact on your approach.

The Slightly Frustrating News

The Inspiring News

Recovery Case 1. ‘The Sports Man’ – Alastair Lynch

 

The Sportsman

The Man: Alastair Lynch’s recovery story is probably my favourite. Here is a guy that was at the top of his sport when he’s confronted with CFS/ME and forced to completely reconfigure his life. Amidst the pressures of his life as professional sportsman he makes a long, slow and steady comeback to go on and win 3 consecutive premiership medals. This guy is one tough and committed hombre.

How it Began: After a turbulent few years involving a car crash, a death in the family and a big weekend drinking he came down with viral symptoms and his dance with CFS/ME began.

How he recovered: Strict dietary changes (high fruit, low sugar, high water, no alcohol). Nutritional & antioxidant supplementation. Paced exercise overseen by his doctor.

How long it took him: 1994 to 2003 – 8 years.

To what level he recovered: ‘And as long as I look after myself, I’m pretty much back to normal these days.’ That means playing high intensity full contact professional sport. ‘I’ve been patient and I’ve worked very, very hard.’

Further info: You can read more about his story in his book Taking Nothing For Granted. While it’s a short and interesting read there isn’t actually all that much information on his specific recovery tactics. Alastair reckons that along side a number of other strategies this multivitamin supplement helped him get back on his feet. I’ve checked it out and it seems to be a fairly comprehensive synthetic mixture that appears to be available in Australia.

 

Recovery Case 2. ’The Lady’- Clare Kerr

The Woman: Clare Kerr struggled for a long time with her illness before finally getting diagnosed. She seems to have a go get attitude which probably set the conditions for CFS/ME but also helped her persevere to find a way to get better. Her Doctors in the UK appear to have been crucial in her road to recovery.

The 'Lady'.

How it began: Glandular Fever while at boarding school leading into CFS/ME.

How she recovered: With help from Dr Jean Monro from the Breakspear hospital in the UK Clare used a strategy of targeted vitamin and mineral supplements to strengthen the immune system. It seems this wasn’t just about reaching for the old jar of multivitamin’s. From what I gather Breakspear conduct extensive testing and tailor individual programs from their results.

The holistic and mindful approach seems to have also played a key part for Clare. ‘I have learnt that to be well, I have to put in as much as I want to get out. I practise yoga and meditation daily and stick to a healthy diet high in protein and vegetables. I don’t drink or smoke and I take a daily cocktail of vitamin and mineral supplements to strengthen my immune system. It’s little price to pay for having both feet firmly back in the world once again, doing all the things I was unable to do for so long.’

How long it took her: 1996- 2003 – 7 years.

To what level she recovered: ‘Since then, my health has improved steadily. Relapses are rare and are usually linked to a momentary lapse when I let myself become stressed or eat some of the few foods I’m allergic to.’ ‘I have learnt that to be well, I have to put in as much as I want to get out.’

Further info: Here is a link to an article from The Times detailing Clares recovery story.

 

Recovery Case 3. The Doctor – Bruce Campbell

The Doctor.

The Man: Bruce Campbell is a Phd graduate from California who before becoming unwell himself had experience running self help programs for people with chronic illness. So he was perfectly positioned (with knowledge and finance) to pull out all the stops and go on to recover. His story is unique in that he adopted a strategy of self treatment involving frequent rests, minimal activity and without a dependence on prescriptions or supplements.

How it Began: Bruce had a sudden onset of CFS/ME in 1997 though the exact cause is unknown.

How he recovered: Using only lifestyle change – ‘listening to my body and adapting my life to its needs. No supplements and no medications. A key aspect of this were his scheduled rests - ’Over time, I came to believe that my scheduled rest was the most important thing I did to aid my recovery’.

How long it took him: 1997 to 2001. 5 Years.

To what level he recovered: ‘I gradually returned to the same level of health I had before becoming sick and have remained healthy now (2009) for eight years’

Further info: You can read more about Bruces story and strategies here and  learn about the organisation he founded to share his tools here.

Recovery Case 4. ‘The Therapist’ – Alex Howard

 

The Therapist.

The Man: Alex is a most inspiring individual. He took his CFS/ME by the horns and used it to fuel a process of extreme personal growth, which not only resulted in his recovery but also saw the birth of the Optimum Health Clinic, a practice based in the UK which is dedicated to helping people around the world to recover from chronic illness. His case of CFS/ME sounded quite similar to mine and he was around the same age when he became unwell so I drew extra hope and determination hearing his story.

How it Began: When Alex was 15 he woke up with feeling unwell thinking he had a flu. So began his adventure with CFS/ME.

How he recovered: After an epic journey of self education Alex recovered using nutrition, psychology, meditation, yoga and diet.

How long it took him: 7 years.

To what level he recovered: He is currently managing and expanding a busy health clinic in London and raising a young child. In other words. He’s 100%.

Further info: Here is a link to a video of Alex detailing his recovery journey. You can also read the story in his book Why ME which I really recommend for a boost of inspiration.

 

 

Recovery Case 5. ’The Big Comeback’ - Mike Dessin

                  

The Man: Mike is like the Rocky of the CFS/ME recovery world. He was down and out. Nobody would listen. But then he found the trainer (Doctor) and went on to win heavyweight gold. A miraculous recovery. I have mega respect for this guy.

How it Began: Mike had nagging symptoms for 12 years after a serious ‘flu’ but managed to live well and hide his medical issues from the world. But then in 2006 the heavy weight symptoms kicked in and his comeback journey began.

How he recovered: Finding the right doctor who went the whole nine yards with him. Using a special form of Neural Therapy, detoxing and supplementing to target viruses in the body and rebuild the immune system.

How long it took him: Around 4 years until he found the doctor that would help him who it seems needed less than 12 months to get him back on his feet.

To what level he recovered: ‘I’m living at about 90% functionally. It’s a normal life, but I have some limitations…. People are so sick that they don’t have hope. What I want people to know is that it’s possible to come back from any stage of this illness. It doesn’t matter how damaged their heart and their brain are. They can still come back. I’ve seen it. I’ve been there. They may not be able to come back to 100%, but they can come back to 80 or 90%. People should really know that’

Further info:  The Mike Dessin Story (skip to the end for summary by Cort Johnson if it’s too long for you to handle). And some more updates from himself and two others who recovered in similar fashions on his progress here. These stories are dense and difficult to absorb in one go so take your time and avoid bringing on the brain fog.

 

Recovery Case 6. ‘The Olympian’ – Anna Hemmings

The Olympian.

The Woman: Anna is an Olympic Canoeist from the UK.

How it Began: After living life as a type A personality overly focused on achieving  she experienced sudden onset exhaustion that wouldn’t go away. It seems Anna had joined the CFS/ME conga line.

How she recovered: Anna had one on one sessions with Dr John Eaton and for her it did the trick. He has developed a psychological treatment for CFS/ME called Reverse Therapy which is designed to clear any emotional blockages, calm the physiological system and return it to health.

How long it took her: Lucky for Anna that her recovery path was relatively short, lasting around 2 years.

To what level she recovered: A seemingly complete recovery seeing her go on to win canoeing championships.

Further info: A newspaper interview with Anna can be found here. She is also profiled in the Alexandra Bartons book Recovery from CFS: 50 Personal Stories.

So what does this all mean for me?

Basically these stories show once and for all that it’s possible to recover from CFS/ME. You just need a bit of time, a bit of patience and a lot of courage and determination. But hey, I believe in you, even if you don’t sometimes!

I’ve found it’s useful to read these stories again and again so that the concept that in fact recovery is possible sinks deep into your subconscious mind.It seems there are many different roads to recovery so do your research, experiment, listen to your intuition and above all be gentle with yourself.

I’ll race you to the finish line of Good Health!!….Slowly and cautiously of course taking adequate breaks and pacing along the way.

 

Got a recovery story you’d care to share?

Leave a comment below and brighten up someones day.

Where to Next?

Get the low down on the Art of Napping.

Or even better. Forget about all this CFS/ME stuff for a while, grab the nearest living creature and dance uncontrollably around your room (or bed) to this classic from Marvin Gaye!

 

It's a little known fact that Stewie recovered from a 3 month battle with CFS/ME before joining the cast of Family Guy.

P.S Don’t try and read all of these at once. Take your time and save some energy for later. 

• This is an article detailing the recovery of British performer Michael Crawford who made an epic comeback from CFS/ME to return to the stage and star in Anthony Lloyd Webbers version of Wizard of Oz.

• In this very insightful article health researcher and practitioner William Collinge describes the recovery process he has witnessed in people with CFS/ME.

• Here is an article written by Mel aka ‘Green Girl’. She has a great blog and this post profiles a number of very inspiring recovery stories from some high profile Australians.

• This is the story of Ken Nightingale who educated himself using whole foods, cleanses and natural remedies to heal from a 16 year journey with CFS/ME.

• This is a link to a compilation of recovery stories by Alexandra Barton who her self made the journey from being sick with CFS/ME back to good health.

• This is link to a radio interview with Alastair Lynch and Duncan Armstrong (both high profile sportsmen who fully recovered from CFS/ME). It’s long but really reminds you that the body is able to get it self back to full health.

Old school steam bath? Or medieval torture box? All depends on how much alcohol you had the night before I suppose...

Panchakarma is an intensive Ayurvedic detoxification process. The word means ‘Five Action’ in Sanskrit which refers to the 5 different methods of detoxification that are employed.

Typically the process lasts anywhere from between 15-30 days and involves staying in a residential centre, eating certain foods and having a range of treatments all designed to detoxify your body.

The major treatments include:

• Various types of medicated oil massage.
• Pouring oil or buttermilk across your forehead for 45 mins.
• Ayurvedic medicine (powders, tablets, pastes all plant based).
• Enemas (medicine up the bum).
• Purgation (intense laxative).
• And 1001 other little tricks the Doctors have up their saffron scented Ayurvedic sleeves.

Will it help me recover from CFS/ME?

The million dollar question. Personally Panchakarma hasn’t cured me yet though it’s still early days. Each of the Ayurvedic Doctors I’ve spoken with claim to have had varying levels of success in treating CFS/ME. Here is an interesting case study detailing improvement in a patients conditions after the Pancha Karma.

Ayurveda appears particularly suited to treating chronic conditions due to it’s very thorough, methodical and systematic approach to treatment. It aims to rebalance your entire outlook and approach to life addressing the functions of the mind as well as the body.

On a purely physical level Panchakarma focuses on improving digestion and detoxing the body. Both useful outcomes for most people living with CFS/ME. It is also designed to respect the limits of the body and seeing as only natural substances are used in the treatment it at least shouldn’t do you any harm.

Here is an interesting case study of from an Ayurvedic Doctor that helped a woman recover from CFS/ME through the use of Panchakarma.

This is me after 23 days of Pancha Karma. I'm feeling holy and cleansed but my lungs are still a little wheezy and I'm not sure why. Most importantly my stock portfolio is also performing well.

A typical day in the life of a PanchKarma Patient in Kerala…

6-7:30am – Wake up to the roosters singing to sun. Realise you’re in India as the sound of the local temple pumping out it’s holy music seeps into your brain. Stumble around for a while. Take your morning medicines.

8am – Breakfast. Usually some delicious combination of coconut, banana, rice and herbal tea.

9.30am – Morning consultation with the Doctors. A highly entertaining affair involving 3 highly trained Ayurvedic Doctors with clip boards and stethoscopes asking you how your feeling, taking your pulse and blood pressure and finally enquiring as to your sleep and bowel movements. While one of them talks the others are busy staring intently at you making notes. It’s kind of re-assuring and disconcerting at the same time.

10.15am – Morning treatment (Often some form of therapeutic massage).

1pm – Lunch. The big meal of day involving 5 or 6 incredibly delicious vegetable curries and some form of rice.

2.30pm Afternoon treatment (May be for calming the mind, healing a specific injury or focusing on a particular symptom)

7pm – Dinner. A smaller version of lunch

10pm – Bed time.

I spend the rest of my day relaxing, meditating, doing gently yoga, reading about Ayurveda, writing and walking to the river. 

Where shall I do it?

The way I see it you’ve got two options:

1. If it’s available do it in your own country either making day trips to a clinic or in a retreat centre. This will likely be more expensive, less authentic but also much more convenient and free from hassles.

2. Or fly to Mother India for the whole she-bang. Much more time consuming, potentially effective and down right hilarious. There are many, many places to choose from in India. The majority are spread around its southern most state Kerala where Ayurveda was born, but I’ve heard some of the other centres in India are good as well. Kerala was my pick because its chilled out, tropical and the people are very friendly.

Here’s three centres I’ve visited or been recommended.

Nagarjuna Hospital in Kalady – This is the hospital I’m currently in. It is very professional, geared to westerners (though only around half the patients are foreigners), has amazing food and lovely staff. The food is spectacular. However it has aeroplanes that fly right over every few hours that are extremely loud especially at 4:30am in the morning and it is relatively expensive. You’re looking at around 75,000 to 90,000 Indian Rupees per week.

Arya Vaida Sala in Kochi – This is one of the biggest and more expensive hospitals. Supposed to have good quality treatments in more of a hotel type environment. Don’t be put off by the website by all reports they are a professional outfit with a good reputation.

Arya Vaida Sala in Avula - This is the cheaper rural cousin. I visited this centre for an afternoon and it looked a fair bit more run down than the photos make out. It’s geared towards the Indian market with spicier food and less attention to service. However the two westerners I met their (one was a Buddhist nun from Australia who had been to 6 different Ayurveda centres) both highly recommended the treatments and said the rough edges of the place kind of grew on you  (In an emotionally affectionate way, not literally in a fungal or bacterial way….). It’s also half the price of Nagarjuna.

AVP Pharmacy Hospital in Coimbatorre - This place is in a big city in Tamil Nadu. It has a reputation for having very high quality treatments but is supposed to be very strict. As in you aren’t supposed to leave your room and must completely adhere to all the rules. It’s about a 1/3 less than Nagaurjuna and could be good if you are up for a truly authentic and disciplined Pancha Karma.

Full Bellies & New Friends at Nagarjuna

My experience so far…

(13/12/11) I’ve spent the last 3 weeks in Nagarjuna. It’s a beautiful place with very kind staff who have a lot of heart. I’m not cured yet but I am hopeful that I will start to see improvements in the coming weeks which is when the benefits are said to kick in. I’m lucky that I can go to an ashram and chill out after my stay while many other White Folk go straight back to the 9-5 routine making it tough to maintain the gains they have made.

The detoxification has been quite strong on the body. I’ve been exploring many areas of my psyche in the process, journaling and applying various techniques to understand and be at peace with my busy mind. So far my digestion has improved a little but not alot. I still have head aches and brain fog though to a lesser degree.

The Doctors listen carefully to my description of symptoms but do not see illness the same way we do in the West. They don’t care much about CFS/ME or candida. They care about getting my ‘digestive fire’ kick started, flushing my liver, cooling my over heated mind and nourishing my nervous system with herbal medicine.

I am somewhat enchanted with the Vedic philosophy that underpins Ayurveda and have been studying keenly each morning. This has opened the way for a lot of bliss and new understanding to come my way. Having oil poured into every orifice of my body combined with the language barrier has also made for some very hilariously entertaining moments. And at the end of day this is what life is all about for me.

I’ve really enjoyed meeting the locals and their smiling children down by the river each evening as we watch the heavy red sun set across the tropical vista before us. I’m glad I made it here and look forward to going deeper into the process in the months to come here in Kerala.

Got some experience with Pancha Karma?

Leave a comment and give us all the low down!

Where to Next?

Wondering about Ayurveda? Get the low down here.

Time for a rest? Then this article on the Art of Napping is for you.

Or even get the down low on GcMAF?

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.