Online Recovery Programme Session 5

Where We Are Now

How are you enjoying your morning pages?

Or are you writing, 'I have no idea why I am writing this?' That’s what we all did when we started doing them. But now it’s really enjoyable dumping all that stuff and then starting the day, full of hope, excitement and not thinking about all those negative things, as we have left them in our journals.

How about the emotional ladder?

Have you been moving up the scale? That's something to just keep being aware of, and know it’s a ladder, not a long jump! One step at a time is what it’s about. That really helped me as I was reading these books saying think positive! Yet I felt far from happy. When I realised I didn’t have to feel happy, I just had to find a way to feel a bit better than I did, then a bit better that that, life started to seem a bit easier!

This week we have a great interview with Linda Cairns who has a powerful recovery story and gives some great tips.

How many times have you asked yourself ‘why have I developed this condition?' You see others who seem to take very little care of their health and yet they do not develop any symptoms.

Well today you will learn about what pre-disposes us to develop a chronic exhaustive condition and shed some light on why some of us are prone to suffer from M.E. symptoms.

But first we revisit the 6 Phases of Recovery and focus on Phases 3 and 4.

• Ending destructive relationships
• Learn to say no and mean it
• Letting go of guilt and perfectionism
• Committing to tackling the nutritional and physical changes required
• Integrating healthy exercise like yoga

Developing a balanced life will become an absolute priority. This is the transformational phase where health begins to improve incrementally, when you are having more good days than bad and you may start to think about a new direction or career.

Once we begin to have a vision of how we want our future to look we have a purpose again, which is vital for our health.

Care has to be taken as recoverers enter Phase 5.

We read the books, and discover the horrors of sufferers needing a wheelchair and living on benefits. The percentages are given showing the scary odds that this is how it is and how your life is to be.

We read stories in these books and on the forums about loss. Jobs will have been given up and normal roles like parenting or just being a friend are now impossible. The isolation is so damaging, especially when those around you don’t understand it or can’t deal with it.

Sufferers need guidance and the right support dynamic. We speak to the parents of children suffering with M.E. and they are totally lost, not knowing what to do for the best to help their children. Whole families become defined by the sufferer's situation and life as they once knew it gets hijacked.

The immobility really bites in this phase and causes a knock-on effect if left to continue and acute depression often follows. It is essential to get movement back into the body and that is why we invite experts on healing and movement to speak to our recoverers.

These include osteopaths Gary Weir, Michaela Webb, specialist M.E. and Fibromyalgia Yoga teachers like Jane Montague Wenche from Yoga Life Studio and Alexander Technique teachers like Barbara King.

Their essential input helps those who have been immobile for a long time to re-introduce movement in a gentle and supportive way, so the fear is taken out of moving.

This is the phase in which a sufferer craves a cure and looks to the medical profession for answers or tries an endless round of therapies and treatments that they give up on because they do not get the quick fix they are desperate for.

This is one of the most challenging phases to get through, because people are left to flounder and the stress of symptoms and the consequences of the condition will have stripped away much of the life they had before they got sick.

This phase can last a very long time if it is not intercepted by someone who understands the phases. New symptoms emerge as the sufferer withdraws into a world of M.E.

The only respite may be support groups who may focus on the symptoms rather than recovery. It is at this point that sufferers can get stuck, give up and resign themselves to a lifetime of living with a chronic condition and their attention may turn to attending workshops for chronic conditions, to manage symptoms and fundraise for a cure.

A sinister development that can happen is that some people get very angry and bitter and they are so convinced that a cure has to be found by the medical profession that they actively attack anyone that says you can recover.

We can totally understand this and get attacked by people who are stuck in this belief pattern. They reject any possibility that their emotions, mind set or lifestyle will have contributed to the condition.

When someone is unwilling to take some personal responsibility, it is sadly impossible to help.

To move through this phase the sufferer has to be willing to shift their focus from either searching for an external cause like a flu bug or virus or waiting for the medical profession to come up with a definitive cure.

Once a person has taken the decision to do what is necessary themselves, that is when everything changes.

Phase 4 will include:

• Eliminating behaviours and beliefs that hold you back
• Looking at your lifestyle, diet and emotional health before the crash
• Examining your emotional triggers
• Identifying what causes you to feel stressed.
• Ending destructive relationships Learn to say no and mean it
• Letting go of guilt and perfectionism
• Committing to tackle the nutritional and physical changes required
• Integrating healthy exercise like yoga

Developing a balanced life will become an absolute priority. This is the transformational phase where health begins to improve incrementally when you are having more good days than bad and you may start to think about a new direction or career.

Once we begin to have a vision of how we want our future to look, we have a purpose again which is vital for our health.

Care has to be taken as recoverers enter Phase 5 which will be covered in Session 7. Hopefully, by now you can see more clearly where you might be or have been at different stages of your health crash.

We are creatures of habit. We naturally resist change and choose to stay comfortable and we would rather feel uncomfortable doing what we know than be honest and stop doing it. 

That is why:

• We stick with a partner or spouse we are unhappy with
• We say yes when we really want to say no
• We work at a career we don’t enjoy, or study for degrees that we don’t really want to do or were someone else’s idea!

Why?  

Because even though the impact of any of the above is extremely negative, it can seem preferable to the fallout of facing up to the truth and telling someone: 'I can’t do this anymore'. 

Ask the legions of professional coaches and change management consultants who deal head on with the resistance to change. People continue to do things even though they are miserable because they think the sky will fall in if they own up.

What has this got to do with M.E.?

Well, denial can only last so long before it has an effect. The result is stress and add to that other factors like long working hours, poor diet and emotional upset, and you have a recipe for stress overload.

We will deal with exactly what happens inside the body when we have been exposed to long term stress in Sessions 7 and 11 and 21 but briefly, a stressed system produces hormone imbalances that detrimentally affect the immune system.

With an impaired immune system it is easy to see how viruses and/ or system overload can be the catalyst for a domino effect and your health fails, causing the myriad of symptoms that is termed M.E.

Babies aren’t born with M.E. but children suffer the symptoms. What stresses a child’s system so much that their natural vitality is lost? It’s a great question and one that a colleague and one of our experts Linda Cairns faces every day in her work with children.

‘Without fail there is a trigger that underpins the illness and many, many times there is an expectation of that child achieving something that they perhaps would not have chosen themselves - illness can serve as an unconscious escape route.’ 

The M.E. Profile

The payoff of a debilitating illness is that people can’t make demands on you. You can avoid doing things that no longer serve you and of course it is the illness that gets blamed rather than the person. 'I am sorry I am just not well enough’ is hard to argue with.

If you are wanting to avoid the fallout of telling someone something that they won’t want to hear, or want to avoid guilt or upheaval, then illness takes care of that.

Before we focus on our behaviours around work and study let’s take a step back and get familiar with the M.E. Profile – the characteristics and learned behaviours that pre- dispose someone to develop a chronic exhaustive condition.

‘The A Type Personality’

People who get M.E. symptoms are usually without exception very busy, very dynamic people. They are the A Type Personality who are often the ‘drivers’ and ‘strivers’ among us.

Does that describe you? Overachievers, perfectionists and over-givers are prime candidates for a breakdown of health.

The overachiever can become addicted to work or sport or simply taking on far too much. We are familiar with the term workaholic yet there is very little recognition of just how much this can destroy health.

This can be also be true of children and young people who are studying very hard or putting themselves through a punishing schedule of extra-curricular activities. In many cases we see people who are overextending themselves in both arenas.

‘A Types’ often have control or perfectionist issues holding impossibly high expectations of themselves. Working to the point of exhaustion is a form of self -abuse. Putting everyone else’s needs before your own is the same.

Often this group won’t allow themselves any rest until they have helped everyone else and feel selfish or guilty if they think about their own needs. Rest is only allowed when they have achieved perfection or are completely exhausted.

This behaviour may stem from a family work ethic and is driven by feelings of not being good enough. In many cases though, it is due to taking on responsibilities too young.

We cover this fully in a future Session 23 about 'Expectation of Self’. Recovery can happen when we become aware of the tendency of perfectionism and release the hold it has on us.

It is great to get to a point where things can be okay or good enough without anxiety or need for them to be perfect.

How can you recognise your level of sensitivity?

In her work ‘The Highly Sensitive Person’, Dr Elaine Aron provides examples of characteristic behaviours, and these are reflected in the questions she typically asks patients or interview subjects:

• Are you easily overwhelmed by such things as bright lights, strong smells, coarse fabrics, or sirens nearby?
• Do you get rattled when you have a lot to do in a short amount of time?
• Do you make a point of avoiding violent movies and TV shows?
• Do you need to withdraw during busy days, into bed or a darkened room or some other place where you can have privacy and relief from the situation?
• Do you make it a high priority to arrange your life to avoid upsetting or overwhelming situations?
• Do you notice or enjoy delicate or fine scents, tastes, sounds, or works of art?
• Do you have a rich and complex inner life?
• When you were a child, did your parents or teachers see you as sensitive or shy?

Do any of those points sound like you?

It was a revelation to me that there were other people who felt like this and again and again, as we do this work, we find high levels of sensitivity are found among those who suffer exhaustive conditions.

Physically this may mean reacting to chemical sensitivities like paint, medications or metals. This is why amalgam fillings can cause havoc in some of us. What others can tolerate can be very toxic to a highly sensitive person.

We have all read about a teenager who tried a recreational drug just once and it killed them. Their peers may be able to tolerate the same chemicals regularly seemingly without ill effect.

The good news is once you are aware of your sensitivities you can respect them and stay well. We have also identified other contributory factors such as:

• Vaccines/the pill/antibiotics
• Viral infection
• Poor diet
• Lack of movement – or inappropriate exercise
• E.M.F.s
• Family dynamics…
• Major life event or suppressed trauma
• Relationship issues
• Pressurised lifestyle / career

However, although we will look at all of these in future sessions, in the next module we will focus on the last of these.

As we have discussed, this may not be about work as it is common for sufferers to have been high performers in a physical sport. The relapse cycle happens when you begin to pick up and feel better. You will push yourself too hard, too fast.

The little energy reserve you have accumulated will be used up before you realise it is gone. You will be running on empty and will simply relapse because you will not have changed how much you expect yourself to pack into a day.

The word frustrating doesn’t even cover it, does it?

The feeling that you will never be able to get back to normal can overwhelm you if you don’t fully understand why it happens. We explain this in more depth in Session 9 ‘The Importance of Your Endocrine System’ and once you understand the way energy is produced and how the ‘back up’ systems work, you will understand relapses and know how to avoid them.

So how do you change if you have been a person who does too much?

I made lists of everything I did or felt responsible for in a typical week. It filled two pages of foolscap paper- it was ridiculous. If you had advertised that job no one would have applied for it.

I also Googled the word ‘workaholic’ and was amazed to read descriptions that could have been about me! I learned that driven people don’t feel they are good enough. They feel they have to work more, do more, be more than others to feel accepted.

They will often define themselves by what they do, putting themselves and often those around them under severe stress. They thrive on hearing ‘Wow you are amazing I don’t know how you do it!’

My nickname was Wonderwoman Wilkins. So when I couldn’t do those things anymore who was I?

I also read about healing and realised I had to learn new ways to live if I were to get well and stay well. I had to learn the ‘Mars bar’ lesson of making sure I could work, rest and play.

I watched healthy people and saw how they set clear boundaries between work, rest and play. I saw how they would do their best and then let it go. Their focus was different from mine as they spent time doing nothing and enjoyed it.

Gradually, when you become an observer willing to learn new ways of being, these layers of self-discovery drift to the surface and allow you to make the bigger shifts that make the biggest differences to your health.

One day you will find yourself able to say that one thing that you had not dared to admit to yourself.