Having ME has made Lucy Dorey change her life for the better

Daily Echo: Having ME has made Southampton woman change her life for the better Having ME has made Southampton woman change her life for the better

SHE was living in New Zealand enjoying an outdoors lifestyle and working hard as a nurse when she first became unwell.

Lucy Dorey, now 44, started to develop allergies. Then she became extremely itchy and developed viral symptoms such as swollen glands.

She thought she was unfit and decided to do more exercise, but rather than making her feel better, she just became increasingly tired.

When she returned to the UK to live near family in Southampton later that year it took around five months for her to find a job, which forced her to slow her pace of life.

Then she got a demanding nursing job working with substance abuse. When her place of work changed to a factory estate, she began to feel increasingly ill. She cut down her hours but it didn’t help.

“I crashed completely,” she says. “I could no longer function, basically.

“I had extreme fatigue and I was really achy – I spent a lot of time in bed and could rarely leave the house.

“My head was very fuzzy and I couldn’t think straight – I couldn’t concentrate or remember things.”

Lucy suspected that she had ME – myalgic encephalopathy, a chronic illness that particularly affects the nervous and immune systems, also known as chronic fatigue syndrome.

The illness can cause extreme fatigue, pain, sleep disturbance and problems with memory and concentration.

But she says her doctor was dismissive of her symptoms and she felt pressured to return to work before she was ready. She then had to go off sick for several more months and eventually her company let her go.

By this point she had been diagnosed as having ME, which helped her to manage the condition. But it was when she discovered meditation that Lucy began to realise how important it was for her to drastically change how she was living.

“I began to appreciate really slowing down and overcoming a lot of the negative thoughts, worry and stress and to appreciate little things,” she says.

“It was really difficult for me to let go of my ambitions and the way I saw myself,” she adds.

“I didn’t accept it for a while. Then I relaxed into being ill, taking each day as it comes and focusing on what I could do rather than what I couldn’t – and somewhere in there I started to improve gradually.”

Lucy realised she needed a change of career. Having previously trained as a counsellor and really enjoyed it she realised this could be the right direction for her.

“Then I came across acceptance and commitment therapy – ACT. It’s based on mindfulness but is a combination with behavioural therapy.

“You work out what’s important to you in your life and take a step at a time towards that.”

Lucy followed the therapy herself before training and setting up her own business as a counsellor, mindfulness trainer and ACT therapist.

It has transformed her life.

“It really helped me stop and reflect, because having less energy, it’s even more important that I put what I do have into things that really matter to me.

“I think a lot of people don’t have time to reflect – they’re busy getting on with life and they’re sort of on autopilot.

“Now I feel good about my life,” she adds.

“I wouldn’t have wished ME on myself or anyone else but I feel like I’ve learnt an incredible amount through it.

“At times it was an incredibly crushing experience but now I’m finally able to see it as something that has taught me to really appreciate life and have more balance.”

Lucy has to be careful not to take too much on as she knows from experience that she can easily relapse and be left in pain and utterly exhausted. But she is learning to balance her work – which she loves – with other aspects of her life, including getting the rest she needs.

“I live really simply now.

I don’t like to have too much stuff. I may not be able to afford to go on long holidays, but some people are always working towards them, living for their holidays. I’m appreciating today.”

She adds that there is a lot of misunderstanding about ME.

“I’d say to anyone who has the symptoms, if you don’t have a GP who is understanding try to find one who does or be referred to the ME service.

“I think people find it really hard to understand ME and those of us who have it need to understand that.”

She believes that adapting is key to getting the most out of life if you have the condition.

“I don’t think there are any easy answers.

Work out what you can do rather than what you can’t and make sure you focus on things that matter to you.”

She adds that the mindfulness techniques that she has found so useful can help anyone to get more out of their life – whether they have ME or not.

“It reduces stress, helps with depression and can help enormously with anxiety as well as pain and illness.

“We all have a tendency to get stuck in thought processes that aren’t very helpful.

“Mindfulness offers a break, so we can start to experience more of the moment, not be thinking about the past or the future.

“It can help you feel more connected.

People look for that in all sorts of addictions, but by getting to know your own mind, you can solve quite a few of those needs.”

  • For more information about ME/chronic fatigue, visit meassociation.org.uk.
  • For more information on Lucy’s training and therapy practice visit evolvetrainingand therapy.co.uk

Lucy's simple mindfulness technique: 

“As you drink a cup of tea or coffee, take a moment to notice the colour, the light on it, feel the warmth of it, smell it and taste it as you put it in your mouth.

You will find you get distracted and think about something else, so then bring your attention back to the drink.

It’s a moment to be with what is here and right now, rather than being caught up in your thoughts and feelings.”

Daily Echo:

Comments (4)

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2:25pm Tue 18 Feb 14

Quizbook says...

We should all be more aware of ME and its effects.

ME is not the same as chronic fatigue, a term often used for a wide range of stuff the doctors dont yet know the cause of.

Still, at least an article such as this is a step forward.
We should all be more aware of ME and its effects. ME is not the same as chronic fatigue, a term often used for a wide range of stuff the doctors dont yet know the cause of. Still, at least an article such as this is a step forward. Quizbook

6:16pm Tue 18 Feb 14

Joannemar says...

I am pleased to hear you have found ways to live with your chronic condition many patients really struggle with this horrendous misunderstood disease.

I was fortunate that after 4 years of ill health my ME/CFS was found to respond to antibiotics and this led my GP to consider Lyme Disease as a possible cause. My records showed a history of bites, bulls eye rashes summer flu' and migrating arthralgias before my condition became debilitating.

A research on the Internet led me to Lyme Disease Action website (LDA) from where I learnt information for patients and clinicians.

I have 'met' many patients with ME who have later found that they have an underlying bacterial infection- Lyme disease and that on long courses of antibiotics they have their health and life back. Here in Guildford there are a growing number of cases but of course the New Forest has been a known endemic area for tick borne diseases for many years and it can also be contracted in most countries around the World.

The science is still emerging on Lyme disease current testing can miss over 50% of cases not everyone is aware of the bite and half the people never get a bulls eye rash although if you do you are infected as it is diagnostic for Lyme Disease although frequently missed by doctors.

Public Health England were involved in research recently details on LDA website that has brought to light the many uncertainties in the current NHS/PHE guidance but as it will be at least two years to update that guidance patients and doctors can check current information on Lyme disease Action Website.

There is a really good book just published by Dr Horowitz - Why Can't I get better? Solving the mysteries of Lyme and chronic Diseases available through Amazon.

This book details many underlying conditions that the chronically sick patient struggles with and is as pertinent to those with ME as it is to those with Lyme disease.
I am pleased to hear you have found ways to live with your chronic condition many patients really struggle with this horrendous misunderstood disease. I was fortunate that after 4 years of ill health my ME/CFS was found to respond to antibiotics and this led my GP to consider Lyme Disease as a possible cause. My records showed a history of bites, bulls eye rashes summer flu' and migrating arthralgias before my condition became debilitating. A research on the Internet led me to Lyme Disease Action website (LDA) from where I learnt information for patients and clinicians. I have 'met' many patients with ME who have later found that they have an underlying bacterial infection- Lyme disease and that on long courses of antibiotics they have their health and life back. Here in Guildford there are a growing number of cases but of course the New Forest has been a known endemic area for tick borne diseases for many years and it can also be contracted in most countries around the World. The science is still emerging on Lyme disease current testing can miss over 50% of cases not everyone is aware of the bite and half the people never get a bulls eye rash although if you do you are infected as it is diagnostic for Lyme Disease although frequently missed by doctors. Public Health England were involved in research recently details on LDA website that has brought to light the many uncertainties in the current NHS/PHE guidance but as it will be at least two years to update that guidance patients and doctors can check current information on Lyme disease Action Website. There is a really good book just published by Dr Horowitz - Why Can't I get better? Solving the mysteries of Lyme and chronic Diseases available through Amazon. This book details many underlying conditions that the chronically sick patient struggles with and is as pertinent to those with ME as it is to those with Lyme disease. Joannemar

6:25pm Tue 18 Feb 14

Joannemar says...

I am not sure if links are allowed these are the ones related to my earlier post
Lyme Disease Action http://www.lymedisea
seaction.org.uk/

NHS Duets website showing Uncertainties http://www.library.n
hs.uk/duets/SearchRe
sults.aspx?catID=155
87&tabID=296

Dr Horowitz book Why can't I get better? http://www.amazon.co
m/Why-Cant-Get-Bette
r-Solving/dp/1250019
400

From the above link you can look inside the book to read some of the early pages well worth reading for those with Chronic diseases.
I am not sure if links are allowed these are the ones related to my earlier post Lyme Disease Action http://www.lymedisea seaction.org.uk/ NHS Duets website showing Uncertainties http://www.library.n hs.uk/duets/SearchRe sults.aspx?catID=155 87&tabID=296 Dr Horowitz book Why can't I get better? http://www.amazon.co m/Why-Cant-Get-Bette r-Solving/dp/1250019 400 From the above link you can look inside the book to read some of the early pages well worth reading for those with Chronic diseases. Joannemar

6:35pm Tue 18 Feb 14

Sirshocking says...

Good to hear your better with what you are doing. You should look at the bigger picture and change your diet to exclude sugar to one that is designed for humans. The western diet is the culprit for the majority of chronic illnesses and obese people. Going on an autoimmune protocol like the Myhill protocol or AIP to repair the damage and nourish the body will do you wonders and get you back to near where you were before. As a nurse I'm sure you would understand that.
Good to hear your better with what you are doing. You should look at the bigger picture and change your diet to exclude sugar to one that is designed for humans. The western diet is the culprit for the majority of chronic illnesses and obese people. Going on an autoimmune protocol like the Myhill protocol or AIP to repair the damage and nourish the body will do you wonders and get you back to near where you were before. As a nurse I'm sure you would understand that. Sirshocking

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