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The purpose of this document is to give you some observations from my experience with CFS that may help you. Like you will have, I had a lot of time to think about what was happening to me.

The first thing to understand is that you are not alone and you can “beat” CFS. Many people have. Some have not. I did. You can. As Churchill once said when asked the key to his approach to life – never give up.

Be warned – you can be inundated with widely varying and confusing advice and comments – both from your doctor(s), alternative medical practitioners and people you meet.

· “Take these anti-depressants”

· “It’s all in your head”

· “Just try and push through and live your normal life”

· “Exercise / go to the gym”

· “Pace it / don’t over do it”

· “Rest”

· “Continue jogging”

· “Stop jogging”

· “Take icy cold baths”

· “Acupuncture is what you need”

· “Take these testosterone supplements”

· “I had that - you have to go and see this particular practitioner – only they can cure you”

· “You are clearly a victim of your deep unexpressed anger, you should seek counselling”

· “You don’t look ill.”

· “You were overdoing it – everyone except you could see that.”

· “You need to take a good look at your life.”

· “I hope its not catching.”

· “I think I’ve got that. But maybe we’re all just getting old. You can’t keep going like a train for ever you know. You should slow down and smell the roses.”

· “You’ll never recover to how you were before.”

· “I know someone who caught that – they are a basket case now.”

· “Presumably you’ll now take early retirement.”

· etc, etc, etc

Be clear - CFS is a very real and serious challenge. The experience takes time – months rather than days or weeks.

Don’t succumb and do accept CFS can be “healed” – whatever people tell you and however you feel during the bad moments of despair that you may go through on your journey to recovery.

Points to be aware of

There are several points to be aware of:

1. Ignore the people who say it is all in your head. That is simply not true.

2. Be aware that the medical profession find the “disease” of CFS tricky to define, let alone “cure”.

3. Be cautious of running from one doctor to the next trying to find someone who can “fix” you. However not all doctors are sympathetic to or have an understanding of CFS.

4. People (and medical practitioners) will offer you well meant advice on a wide range of treatments – some sensible and some dubious.

5. CFS seems to come upon you after a viral infection (bad cough or cold) has maybe weakened your immune system.

6. You have to own this. This is happening to you. CFS is serious and can’t be “swept under the carpet”. “Normal operations”, as you have been used to, are no longer possible. Something has happened and it is going to change your life in the short term and probably the long term.

7. Some people look back and see CFS as a strange sort of blessing (although one you feel you could have done without) as CFS forces you to take “time out” on your life journey.

8. When you are forced to sit on the sidelines of the game of life for a while, you see things differently. The people I know who have “beaten” CFS all say that it is a life changing event. You come out the other end with different goals, priorities and strategies for living.

9. Don’t quit because you feel so tired. Rest and sleep alone will not heal you. You have to exercise / walk as well as rest. The doctors call it pacing. Using 80% of your energy to exercise (even if it is just walking round the house) and saving the other 20% of your energy to “re-charge your battery”.

10. Do your best each day and (like Alcoholics Anonymous) take it one day at a time.

What is happening to you?

It seems the key initial CFS diagnosis question has to be - what is happening to me?

The second set of questions is

· Why me?

· Why now?

· What did I do wrong?

· Am I ill?

· Did I over do it?

· Have I caught something?

· Is “it” curable?

· How did I get “it”?

· What is CFS?

These are all good questions that you have to face.

No – you did not think this would happen to you.

And yes – CFS takes a while to “beat”.

The symptoms of CFS

There are a range of symptoms associated with CFS

My Australian doctor, Dr David Richardson has a list of symptoms on his website – www.roystonclinic.com under the chronic fatigue syndrome section.

He has produced a simple spreadsheet which you can print off and score yourself against as time goes by.

I found his scorecard really helpful and encouraging in plotting my recovery progress. You don’t notice the improvement day by day or even week by week but you can score them and spot the improvements as the months go by.

For now, just tick the symptoms you are currently experiencing.

Be thankful for those symptoms you are not experiencing and understand that CFS is not conquered in a few days or weeks and your body will go through changes. Some symptoms will appear for a few weeks and then disappear.

Your doctor will probably take blood samples and test your hormone levels.

Some readings will be too low or too high – ie “abnormal”. So clearly something is “wrong” with you. Or is it?

Three alternative view points

There seem to be three alternative view points you can take on CFS:

1. It is an illness

2. Medical science does not know the cause of CFS

3. You are going through a deep, internal metamorphosis

1. It is an illness

If CFS is an illness, then what is causing it? Medical science can find no isolatable culprit – bacteria or virus.

Sure they may find from your blood tests that you have been exposed to Glandular Fever (Epstein Barr virus) or other exotic bugs in your past which you may or may not have known about.

But that was then and this is now – so what is causing your CFS?

That was my first response to my doctor – “please diagnose my illness and give me some medicine so I can get back to work and get on with my life. If you insist, I’ll even take a few more days off work or even schedule a holiday to recover my normal life puff.”

Were CFS that simple !!

2. Medical science does not know the cause of CFS

If the symptoms (the effects of CFS) are very real and well documented, there must be a root cause. What is it?

I found it very frustrating for my medical practitioners to say that CFS is a label for a wide range of little understood phenomenon grouped under the vague heading of CFS.

My treating doctors made it clear that medicine’s understanding of the human body is far from comprehensive. CFS affects the body, the mind, the emotions and even affects the core of your being, your spirit - sometimes it is so hard to stay optimistic and positive after months of pain, irritability, fuzzy thinking and total lack of energy and chronic exhaustion.

As I had plenty of time for reflection on this strange, completely unexpected and intensely worrying affliction, I offer you a third viewpoint for your consideration.

3. You are going through a deep, internal metamorphosis

It is my opinion that a third alternative viewpoint – you are going through a deep, internal metamorphosis – makes the most sense.

Imagine you were a caterpillar. You are very good at coordinating all your legs in harmony as you move (balancing life’s challenges) and chomping through prodigious amounts of leaves every day (life’s work tasks).

You are proud of your proficiency at being a caterpillar. You are in control. You are good at what you do. Life is good. You have no idea of what awaits you.

Then one day, your body starts to hurt. You feel so tired and sleeping does not help. Your muscles ache. You sweat a lot. You are irritable for no reason. You can’t think clearly. You feel yourself inexorably slowing down. Then it dawns on you that major bio-chemical changes are happening to your body over which you have no control.

If you went to see a caterpillar doctor, they might well find that your blood tests and hormones are “abnormal”. They might offer you supplements and medicines to help you get back to being a “normal” caterpillar again.

However the chrysalis continues to grow around your body and you can’t move. You have caterpillar CFS – big time.

Weeks go by and although you don’t comprehend what is happening, your caterpillar body and soul are undergoing massive internal changes – completely beyond your control. But clearly something or someone knows what they are doing and there is method to this painful and scary madness that has gripped you.

Then one day, you feel a new impulse of energy – you break out of the chrysalis – and realise you have changed. You have become a butterfly.

You can now fly rather than walk on multiple legs. Your diet and daily life has changed completely. In fact your whole world view has changed.

You were a caterpillar (pre- CFS) when you went in to the chrysalis (CFS). Now you are different (post CFS).

No wonder the caterpillar doctor’s medicines didn’t produce a “cure”. The caterpillar doctor was trying to “normalise” you and analyse effects (low / high blood and hormone levels) without understanding the root cause – you were undergoing a deep, internal metamorphosis.

And yes – this metamorphosis can happen to people of all ages – from teens to much older people. It seems to depend on how long they need more practice as caterpillars before their internal wisdom triggers the metamorphosis process.

The need for a viewpoint

You may find that this metamorphosis viewpoint may be the best model for you to adopt as you face the CFS challenges of the months ahead.

You will have to take some form of viewpoint to avoid becoming a totally helpless victim to a seemingly uncontrollable ailment.

Your doctor will test you and note your body, mind and emotions anomalies. They are very real. He or she may prescribe medicines and therapies – orthodox and alternative.

However they may all be caterpillar medicines and treatments. Your body has the wisdom to normally run your growth, digestion and healing. Yes – some germs and things like cancer can defeat it. But CFS is not a terminal illness. It is something different.

The key question (if you are undergoing a deep, internal metamorphosis) is - what does your future butterfly self need whilst you are in this chrysalis (CFS)? – medicines, supplements, Chinese herbs, rest, sleep, exercise, good diet, a holiday, immune system strengthening, massage, acupuncture, yoga, meditation, counselling, psychic healing – everything on the list – nothing but patience?

If you are currently sleeping 23 hours per day, these may seem strange questions at the moment but you still need a framework on which to build a model of understanding around what is happening to you. This is especially true for a teen missing “vital” school term(s). Why is this happening to you? What’s wrong with you?

I suggest you listen to your doctor(s) and then make your own decisions about what you are going to do to own your “healing”. I accepted some drugs and treatments and declined others. I also sought out a wide variety of alternative therapies.

What worked and what didn’t help? I have no idea.

All I know is that the other side of CFS is achievable but be warned – you will probably look at life and your priorities somewhat differently.

Did the caterpillar want or choose to be or know it was going to become a butterfly? No.

Did the metamorphosis happen anyway? Yes.

Could the caterpillar stop the metamorphosis process? No.

Is there an amazing bio-chemical wisdom at work during a metamorphosis? Yes – far beyond the understanding of the caterpillar and its familiar frame of reference.

Clearly you are not going to grow physical wings. You may end up with less physical stamina. But the main metamorphosis changes from CFS seem to be internal - how you think and feel about life.

Why do some people never get “better”? The doctors call them fallen trees – ie they fall over with CFS and never get up again.

Maybe they don’t “get better” because they insist on trying to stay as caterpillars. Maybe the CFS experience erodes too much of their spirit and their life puff – CFS is tough to beat.

Presumably not every erstwhile caterpillar survives the chrysalis experience to emerge as a butterfly.

Maybe they don’t take their CFS experience seriously – one person we know still smokes heavily and won’t exercise despite their chronic fatigue dragging on for years. Who knows? That is their challenge.

Your challenge is to figure out how you are going to approach and tackle your CFS.

Your choice of viewpoint

You have to choose how you view this unforeseen affliction.

1. Either you are sick – with what, caused by what?

2. Or – you have simply been diagnosed with this mysterious ailment called CFS. You are a victim and your recovery and future health and life is in question.

3. Or - here it is – the CFS metamorphosis that happens anyway – ready or not.

My advice is the viewpoint you choose will have a major effect on how you handle the challenging times ahead of you. Always work with your treating doctor. You would be nuts to try and “go this alone”.

Summary

Right now you are:

· Surprised – you were not planning on CFS

· Angry – the timing is totally inappropriate

· Scared – what is happening to you

· Worried – you have lost partial control of your body, mind and emotions

Welcome to CFS. The life experience you feel you could have well done without.

Yes – you are not your normal self. You may never be an “A” grade caterpillar again.

But you are not ill. Don’t worry that the medical profession can’t completely understand CFS.

Accept you are on a journey of transition that is happening to you.

Work with your medical practitioners but own your CFS, experience the transition in becoming a butterfly - the new and different you.

You can’t ignore or resist the deep, internal changes – they are happening. And anyway – the world is awash with munch-munch-munch caterpillars. It needs more butterflies like you will become.

I hope this alternative model gives you a better CFS “explanation” or working model than much of the advice everyone will give you and the attitudes they may take towards you.

As I said, many months on the sidelines of the game of life will almost inevitably change your views on how you play the game again when you get “better” – as you will.

Your only job is to be patient and have understanding with the incredible wisdom that is guiding your bodily and mental functions – 7 * 24. It knows what it is doing.

You will be OK (but probably different) after this strange phenomenon called CFS.

Good Luck. See you on the other side.

Postscript

On the recommendation of a colleague, I recently read Robert Johnson's book - He - Understanding Masculine Psychology.

Johnson is a Jungian psychologist. It is a short book - 82 pages and very interesting.

On page 74, he is talking about the hermit within -

The hermit is the highly introverted part of one's nature that has been waiting and storing energy in a far off corner waiting for this very moment. Extroversion is the usual dominant of the first half of one's life and that is correct. But when one's extroversion has run its race and taken one on that very valuable part of life journey - then one must consult the hermit deep inside for the next step. We do this very badly in our culture and few people know how to draw upon the genius of their introvert nature for the next step. It frequently happens to a modern person that he is forced into his introversion by an illness or accident or paralyzing symptom of some other kind. The hermit is a noble figure and will serve you well if you can go to him in honour and dignity. There is little dignity left if one is dragged into his realm by accident or illness; but one way or another he will have you sometime about the middle of your journey - dignity or no dignity.

The bold text is my addition. Does it sound familiar? !!!!

Another angle for your consideration - what has your inner hermit got to tell you at this stage of your life journey?