The Chrysalis Effect A Positive Guide For Those Caring or...

The Chrysalis Effect

A Positive Guide For Those Caring

or Supporting A Person in

Recovery From M.E., C.F.S. and

Fibromyalgia

The Chrysalis Effect T: 01883 712555 W: www.thechrysaliseffect.com E: [email protected]

I am so delighted that you have found this information. If you are reading this, you probably have someone you are close to struggling with a multitude of symptoms that have impacted on their life, and you are quite understandably seeking answers to your many questions.

The first thing to say here is to reassure you that no matter how difficult things seem right now, please know that it is absolutely possible to recover. The difficulty for many people over the years is the lack of education and information about what causes so many symptoms and the conflicting advice about what to do about them. This in itself causes real issues in the everyday reality of trying to support a person through the ups and downs of their illness. This information booklet has been created to help those caring for a person who is experiencing the symptoms that fall under the umbrella term of M.E., C.F.S. and Fibromyalgia.

It is a practical guide about recovery, not symptom management. As founder of The Chrysalis Effect, a not for profit organisation, I was ill for 6 years before recovering fully. I am certain that when your friend or relative began seeking help for their health breakdown they wanted to recover fully. Who would actually want to learn to live with symptoms that limit the quality of life for those and those that they love?

The trouble is that they may have come up against so many obstacles in navigating that recovery. In so many cases the real harm is done when people do not have recovery information and begin accessing books, websites and support forums that can create doubts about recovery; describing symptoms as long term and chronic with symptom management being the best that you can hope for. Sadly, this is where some people get stuck: pinning all their hopes on the elusive magic bullet and waiting for research to discover the ultimate cure.

What this state of affairs does to personal relationships and families can be far reaching, and that is why this booklet was created; to give you a full understanding of what you can do to avoid the pitfalls that you may encounter along the way and to get the support you need to create a healthy dynamic at home during the phases of the recovery process.

This guide is a collaborative work of a wonderful specialist team of practitioners who have seen up close and personal the impact on families and partners, in their day to day work in the field of supported recovery, and wanted that to change. I would have loved my husband, children and extended family to have had this support: it certainly would have saved them a lot of heartache. There are contact details and further resources included here if you have questions or need any further support.

So glad to be of help.

Elaine Wilkins BA, Hons, PGCE,

ILM, CMI Accredited Coach

http://www.thechrysaliseffect.com/


Symptoms Diagnosis and Approach As you may be aware, there are often a multitude of unexplained symptoms which will have prompted the person you are caring for to seek medical advice. This list will probably be very familiar to you. PAIN - Recurrent sore throats, swollen glands, aching muscles and joints, pins and needles, headaches or migraine, stomach/bowel pain, muscle pain. PERSISTENT EXHAUSTION OR FATIGUE - having flu-like symptoms. BRAIN FOG - Reduced attention span, short-term memory problems, loss of concentration, word-finding difficulties, inability to organise thoughts. SLEEP DISTURBANCE - Unrefreshing sleep, difficulty getting off to sleep, waking for long periods in the early hours, day/night reversal and hypersomnia. MOOD - Frustration, anxiety, panic attacks, low mood/mood swings, depression. PROBLEMS WITH THE NERVOUS SYSTEM - Poor temperature control, dizziness on standing up, hyper-sensitivity to light and sound, sweating, loss of balance. Nausea, loss of appetite, indigestion, excessive wind/bloating, cramps. Alternating diarrhoea and constipation. INTOLERANCE AND INCREASED SENSITIVITY - Bright lights, noise, odours, food intolerances, some medications, alcohol/caffeine, other substances. Many people will have been struggling for quite some time with these ever- increasing symptoms, whereas others feel that there has been a more sudden onset. The current trajectory in the UK for concerned patients is for their GP to arrange initial blood tests. These may very often come back with no obvious abnormalities. With no definitive answer at this stage, GPs will usually ask patients to see if their symptoms dissipate over the next 4 months. This is often where the difficulties begin at home. This approach can set up a lot of unspoken fears. The person who is ill feels disbelieved or is convinced that something has been missed and that there has been a failure to diagnose a serious illness. Trawling the internet is a normal response and with so much conflicting and damning information out there, this can drive an ever increasing fear, not just for the patient but for you.



This period of waiting is exactly when they, and you, need reassurance and information about. What is causing the symptoms and what to do about them? We have included that in the next section. What Happens Next? If symptoms fail to improve of their own accord (which is quite usual), the concern and worry increases day by day, exacerbated by having to deal with the harsh realities of having a previously well and active person you care about unable to function in the way they always have. With most illnesses we expect a diagnosis and a treatment plan so we have an element of hope and control. In M.E., C.F.S. and Fibromyalgia, the worst thing is feeling at a loss, of not knowing what is actually wrong. Meanwhile, attending school, university courses or work might have stopped altogether. Social lives are put on hold and obvious issues like financial worries can start to bite. Then we have the impact on carer givers like yourself. So many people are thrust into taking on the additional domestic workload, plus a caring role - without clear guidelines on how to help in the right way. With no answers forthcoming, it is no wonder that most of us get it wrong. This is difficult enough if this happens to a couple or family whose relationship is healthy and happy. If there is already some conflict or stress in those relationships, this is going to put enormous strain on an already difficult situation.

Understanding the Downward Spiral or ‘Domino Effect’.

Adrenaline Cortisol

Sympathetic Dominance



The Domino Effect is how we describe the downward spiral of symptoms which happens in the body. As you can see from the picture above there is a stressor, or more usually, a combination of stressors that create a cascade effect in system after system: each symptom triggers the next. There is a final straw moment when a person tips over and crashes, and many sufferers with M.E., C.F.S. and Fibromyalgia know almost to the day when that happened. This tipping point is often flu or a virus which persists and drains all energy. Other stressors could be physical trauma from surgery or an accident, glandular fever or adverse reactions to vaccines. Commonly there will have been a period of prolonged stress prior to becoming ill and often a catalogue of accumulative factors including a history of suppressed emotional trauma, loss or bereavement.

Our normal HPA Axis response that calms the body after a short burst of stress becomes

desensitised and this leads to a continual stress response which affects the Adrenals - small glands which sit on top of the kidneys. Adrenal glands are responsible for our fight or flight response. When faced with a threat, the body’s chemical reactions allow us instinctively to either stay and fight, or to run away.

Adrenal Glands-The problem is that in today’s world, lives are fast paced and for some highly sensitive people the adrenal glands switch on and don’t switch off again. When in this state, people become so sensitive that the tiniest thing can cause a rush of adrenalin and release of the hormone cortisol. When this happens time after time, it has a cumulative effect and the adrenals become fatigued. In a stressful situation the body releases chemicals that can trigger increased heart rate and blood pressure, increased shallow breathing, dilated pupils, increased sweating, and shut down the digestive system. Cognitive function is impaired, causing poor concentration and your head can feel as though it is full of cotton-wool, memory is affected. This state is referred to as ‘sympathetic dominance’. The sympathetic nervous system when firing constantly leads to a feeling of being ‘tired and wired’ so sleep is usually affected and many people are exhausted as they cannot sleep at night at all.

It is usual for sufferers to find it really hard to get up in the morning because the cortisol levels rise when they should fall and vice versa. This is called day/ night reversal. The adrenals should be lower at night and higher in the morning so that you can begin the day.



The slowed digestion will generate the many gut issues so common in fatigue and

fibromyalgia. IBS and food intolerances will often become another problem. There may have been a poor diet prior to illness, processed or fast foods, sugary foods, coffee and alcohol are often consumed due to a fast paced lifestyle or to allay some of the uncomfortable symptoms as the body breaks down and becomes depleted. Can you begin to see why there are so many symptoms?

Thyroid - One crucial area, that is often not explained, is the impact on the thyroid gland

which is responsible for the body’s metabolism. This will be affected if adrenal glands are struggling. When it is not working properly the body gets slower and slower, people feel tired all the time, everything is an effort, and then people often struggle with maintaining body temperature. One sign is having cold hands and feet.

A knock on effect from having a compromised gut or eating a poor diet can be difficulty in fighting infections. 80% of the immune system is situated in the gut. This means a cold for a healthy person becomes something much harder to shake off for a person with ME, CFS or Fibromyalgia.

When the Immune System is imbalanced inflammation is caused in the body. It could be in the form of joint inflammation, gut inflammation or skin inflammation. All of these cause a lot of pain and take more energy than the body has to put right. When the immune system is in balance, the inflammation is reduced. Blood sugar control is a very important way of keeping energy levels up and on a constant level, rather than crashes and spikes. Feeding the body with slow releasing carbohydrates and a nutrient rich diet will help combat the highs and lows. Add to that supplements containing minerals and antioxidants and together these help to maintain a constant blood sugar level.

High Toxin Overload. When the body’s adrenals, thyroid, digestion, and immune system

are compromised, the body has to work extremely hard at functioning and removing the toxins from the body. This puts great pressure on the organ that deals with elimination and detoxification for the body. The liver becomes overloaded with toxins and does not work effectively. This is known as poor methylation. High toxin overload can also be due to heavy metal toxicity caused by amalgam fillings; this may need to be checked. It is essential that these are addressed at the appropriate phase of recovery, as removal can cause a relapse if not executed with the right protocols.

Poor Methylation affects the metabolic process which happens in every cell and organ in

the body. The body takes one substance and turns it into another so that it is detoxified, made safe and then excreted from the body. It takes place over a billion times a second in the body.

Mitochondria are a component in each cell in our bodies responsible for making the energy our bodies need to function. Mitochondria cells turn the food we consume into an energy source called ATP using oxygen and other nutrients. Poor mitochondria energy output causes the cells in the body to slow down because they do not have the levels of energy needed to allow the body to function at normal speed.



We can compare this to a car running efficiently. The engine is the mitochondria, fuel is the diet, oxygen is the circulation, heart and lungs, the accelerator is the thyroid, the gearbox is the adrenals, service and repair of the car is sleep, an oil change or cleaning the car is antioxidants, the catalytic converter is detoxification and the driver is the brain. All of the components in a car have to work in order for it to go, and it is the same with our bodies: all components have to function properly for our bodies to work effectively. When the biochemical reactions within our mitochondria become compromised, they have back-up systems. When these back-up systems are used up they take a long time to regenerate energy. This is one of the reasons for unexplained relapse after a seemingly good or energised period.

Blood Tests are all fine – or are they?

What has been a major issue are the inconsistencies in thyroid testing. Across the world the markers that decide whether to treat differ widely. If this test is insufficient it can mean a person struggles to recover: let’s briefly map out the role of the thyroid and why it is so important. When someone is struggling with an underactive thyroid within a chronic exhaustive condition the pituitary gland will send out a message to the thyroid to produce more TSH (Thyroid Stimulating Hormone)

TSH -> Produces T4 (inactive hormone) which produces Thyroxine (It needs Iron, Vitamin D, Zinc, B1, B6, Thyrosine, Vanadium, B2 and Vitamin C to do this)

T4 -> has to convert to T3 (active hormone). This can very often go wrong for those with M.E. and it can then affect the Reverse T3.

RT3 -> Can become high which stops the good stuff doing its job. Therefore, when testing for thyroid problems, it is vitally important to have a

complete set of blood tests. This should include; TSH - Is the pituitary working? T4 - Is the thyroid working? T3 - Is the conversion working? RT3 Thyroid antibodies - is there an autoimmune disorder present?

It is normal for testing to include only TSH, and maybe T4, so often results are lacking the full information. At The Chrysalis Effect we know how crucial a role the adrenals play in chronic exhaustive conditions, and how vital it is to address the adrenal function before addressing the thyroid function. You may have noticed that adrenal testing is not usually mentioned or commonly available within your GP practice. A diagnosis of M.E., C.F.S. or Fibromyalgia is usually given via a process of elimination, when all other possibilities have been ruled out. There is often a 4 month wait for referrals to see



if symptoms subside on their own. Common referrals through the medical route tend to be neurology, rheumatology, Expert Patients Programme, Graded Exercise Therapy, Cognitive Behavioural Therapy and/or a Pain/M.E. Management group. These tend to offer protocols aimed at managing and accepting limitations. Drug treatments The role of GPs is to alleviate suffering, and with so many symptoms these tend to be the most common medications offered:

Pain killers Paracetamol, Codeine, Tramadol or Diclofenac. Anti-depressants, for the depression that can set in and to boost levels of Serotonin

Noradrenaline and Dopamine - these are known as neurotransmitters which are the chemicals which carry messages to and from the brain which are thought to be low in chronic exhaustive conditions.

Sleeping tablets. Muscle relaxants. Antipsychotic medication as a pain reliever. Anti-convulsants, the same as used for epilepsy. Cancer drugs – most recently these have been discussed as an option.

The Chrysalis Effect and the Family Dynamics

Team One of the problems with M.E., C.F.S. and Fibromyalgia is that they are generally poorly understood. It can be hard for family members and carers to know the appropriate care and support to give, or where to access support for themselves. Recovery is faster when everyone concerned is informed of, and supported in, the recovery process. This is where the Family Dynamics Team can help. Wherever you are in your present caring situation, the effect of a long period of illness can be far reaching. Apart from the obvious effects on the person with the illness, relationships with family members, spouses, children, friends and all who are involved in the caring roles can be affected to a greater or lesser extent, depending on individual circumstances.

Can you relate to any of these? 1. Loss of normal family routine 2. Changing roles in the family 3. Increased demands on you and other family members 4. Financial difficulties from job loss and lots of ad hoc treatments 5. Unexpected carer responsibilities 6. Dealing with all child care responsibilities



For couples this may include: 1. Loss of social life/enjoyed shared or individual activities 2. Inability to plan future 3. Loss of connection 4. Loss of sexual intimacy 5. Impact on your emotional physical well-being 6. Having to hide fear from the person who is ill Any or all of these points can cause long term problems if not recognised and addressed. The Family Dynamics Team are experienced Chrysalis Effect Practitioners who understand the importance of ensuring that family members, partners and spouses are well informed and fully supported themselves.

Happy Talk When a person is ill it can insidiously dominate the conversation. It can literally take over a family or relationship. This is a common pitfall and one that must be avoided. Couples and families can forget that the illness is ‘part of life at the moment’ not all of life forever.

It’s good to be aware of what you can do to create as much normality as possible. Some families can cut off all social activities. The house becomes all about illness. This is not a healthy environment for recovery. Knowing how much care is appropriate is important. It’s really easy to fall into the trap of doing absolutely everything for the person, when they are in crash phase, and out of habit continuing

to do too much when they improve. This actually disempowers them and will ultimately lead to a longer period of illness and puts you under long term pressure. If this gets too embedded it can be insidious and slip into a co-dependent or enmeshed relationship which is not a healthy dynamic. Another issue that we see, is disagreement in families about what to do for the person who is ill. Everyone included extended family and in laws have an opinion. These arguments and tensions are completely understandable and can create an environment that affects everyone negatively. That is why it is so important to get informed and have a clear plan.

Top Tips for Carers and Family Members

Remember, recovery is completely possible. Reminding yourself and the person who is ill of this is very important. Immerse yourself in Chrysalis Effect recovery stories.

Make a rule not to talk about symptoms and illness all the time. This is one of the first things we ask recoverers to put in place with family and partners.



Keep a positive recovery focus even on the days that are difficult. This is a good reason to have support for you: someone at the end of a phone who can be objective and helpful.

There is no quick fix. Recovery takes time and commitment but is worth it.

If you have been caring for a while, changing the old approach will be inevitable to create new results.

Recovery is often faster when everyone is informed and supported.

Get clued up. There are sessions in the recovery programme specifically for you to access.

The team approach is much more effective and powerful than disjointed efforts. It is

important that everyone involved agrees on how you are going to support your loved one on their journey to recovery.

It is vital to take time out and do things just for you –

your health and happiness are paramount. Everyone in the family is entitled to have personal space, fun and the opportunity to lead their own lives.

The recovery process can take time and may not

always seem to be straightforward. Trust the process. If your loved one improves and then relapses remember to go back to basics – quite often the good habits and practices get dropped or forgotten as soon as someone starts to feel better.

Encouraging your loved one to sit out in fresh air and nature is very healing as long as

they are warm.

Gentle movement is very important. Yoga Nidra can be done while lying in bed. It is important to get professional guidance on appropriate graded exercise as a person recovers. It is essential people do not just lie in bed endlessly.

It is normal to experience many emotions. It’s really common to feel resentment, anger

or guilt if your life has been affected by taking on a caring role. Don’t be too hard on yourself if these feelings occur - acknowledge the feeling and then aim to put things into place to support you and the rest of the family.

Positivity makes a huge difference. Some days it can feel really hard. That is when you

can tap into the Chrysalis Effect community. There is a great Facebook supporters and carers group to get your questions answered.



When a person has been ill for a long period they lose confidence. This means they

secretly fear going back to work. This fear can be enough to generate a secondary gain. The person who wants so much to get better can be unconsciously in conflict with recovery. We do discuss this ‘elephant in the room’ in the programme, and help people to overcome this and rebuild a new career.

We know that recovery encompasses 8 key areas. Nutrition, Adrenal and Thyroid Function, Emotional Health, Relationships, Movement, Lifestyle and Pace, Life Purpose and Environment. This is why individual therapies and techniques can fall far short of what is required.

As people access this information they learn about a lot about themselves. They discover

what has not been working prior to their ill health. This usually involves one or more family members making some shifts and changes, as well as the person you are caring for. In the programme we suggest things that will accelerate recovery like adopting new eating habits, clearing any cluttered living space, to cease using computers and phones in bedrooms. It could be that some very honest conversations may need to happen. Honesty and letting go of unhelpful situations ultimately benefits everyone.

Encourage creative and relaxing hobbies as they are a great distraction. Keep your own hobbies going.

Bring fun and laughter in your lives. We always suggest having favourite funny films or DVDs of loved comedians to help a person change state when they are low.

Celebrate any improvements, however small they might seem.

Stop reading doom and gloom websites, forums, and books that focus on chronic symptoms.

Recovery or Symptom Management?

Over the years, it really is sad to see how many people sit and wait for research projects to produce a single cure. In the meantime, people can get stuck waiting for a vaccine or external treatment. Our work is all about recovery. These illnesses are the result of physical and emotional stressors on the body. It stands to reason that when both physical and emotional causes are addressed, symptoms will recede. To understand more about The Chrysalis Effect approach, check out the 8 Essentials Guide.



8 Essentials Ebook: http://getyourlifeback.s3.amazonaws.com/8essentialsguide.pdf We thought it might be useful here to outline what your loved one will be up to on the recovery programme. The Chrysalis Effect Online Recovery Programme was developed by the founder who has fully recovered, and is designed to offer 24/7 support to anyone who needs it, regardless of postcode or country.

The Recovery Programme in Brief Recoverers have a dedicated membership area on the Chrysalis Effect website Weekly multi-media sessions are sent via email, to be completed in their own time. All sessions are downloadable and printable – they may need some support with

this, so they can access the content offline. There are expert specialist practitioner interviews included. Inspirational recovery stories Practical coaching tools and breakthrough exercises. Monthly live recovery webinars are a great place to ask questions. Recorded library full of recovery information. Closed Facebook forum for inspiring, uplifting comments, keeping it positive! A Supporters [carers] Facebook forum. Newsletters are inspirational, featuring new recoverers.

Recoverers can access The Chrysalis Effect Online Recovery Programme for 30 days absolutely free to see if it is the right fit for them. Clients fill in and submit a Health Profile. Carers like yourself, can submit a separate

‘Supporter Profile’ and have an opportunity to make contact with a practitioner for a

Health Profile Review with one of our Specialist Practitioners. This is a complimentary

30 minute review conducted over the phone. For some, the Online Recovery Programme is a self -awareness programme and they will follow it on their own as they work towards their recovery.

1 to 1 Support For others, they appreciate the opportunity to work one to one with a specialist practitioner alongside the online programme. This adds the benefit of the programme being tailored to their individual needs. Chrysalis Effect Practitioners take a team approach. When recovery is overseen by a CE Practitioner, if cross referrals are appropriate this will be suggested at the appropriate phase of recovery. This streamlines recovery support, removing the confusion of which therapy would help the most at any given time, be it seeing a Nutritionist, EFT Therapist, Hypnotherapist, or Massage Therapist etc.


http://getyourlifeback.s3.amazonaws.com/8essentialsguide.pdf


All practitioners will have undergone accredited training in wellbeing coaching, specialist training in physical and emotional recovery as well as being qualified in specific therapies. They are able to advise and offer packages of personalised support for those who would like one to one help. Please note that each practitioner is independent and does not work for the Chrysalis Effect. They will explain their costs with no obligation. We pride ourselves in taking a holistic approach, understanding that M.E., C.F.S. and Fibromyalgia are multi-faceted conditions which respond to a cohesive multi- disciplinary approach. We also recognise the impact these illnesses have on you and all those close to a person experiencing this health breakdown. It continues to be our mission to guide as many recoverers, families and partners as possible, to a life full of vibrant and joyful health. With heartfelt thanks and gratitude to the founding members of the Chrysalis Effect family dynamics team for creating this guide. Their deep commitment to supporting those who are dealing with M.E., C.F.S. or Fibromyalgia on a daily basis will transform the experience and outcomes for recoverers and their carers worldwide.

Founder Members of The Chrysalis Effect Family Dynamics Team:

Contact details can be found on the Chrysalis Effect practitioner directory.

Caroline Riley

TCE Specialist Cath Finegan

TCE Specialist

Jackie Webster

TCE Specialist

Su Winsbury

TCE Specialist

Tracy Cornish

TCE Specialist

Sara MacDonald

TCE Specialist Susan Gardner

TCE Specialist



‘Not all of us can do great things. But we can do small things with

great love.” Mother Teresa


https://www.goodreads.com/author/show/838305.Mother_Teresa

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