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ME took my personality... I was too tired to have one

11 May 2016

Health Care

11-17 May is Chronic Fatigue Syndrome/ME Awareness Week.

Life in the fast lane

Before her chronic fatigue syndrome/ME diagnosis (CFS/ME), Jo Redfearn, 41, from Leigh-on-Sea, was the living embodiment of the Type A personality - competitive, ambitious and impatient.

Jo would regularly do 10k runs before work followed by a spot of strength training. She had a work hard/play hard attitude and her motto was "if you don't sweat it's not exercise". Basically, Jo was always busy, energetic and a fun loving "party" girl.

In January 2014, after Jo had been pushing herself and her body to the limit, she was struck down by a virus which was the onset of CFAS/ME. Literally overnight, talking or making a cup of tea became daily challenges. 

CFS/ME mainly causes persistent fatigue (exhaustion) that affects everyday life and doesn't go away with sleep or rest, but there are other symptoms including pain in muscles and joints, headaches, digestive problems, difficulty concentrating (brain fog) and generally feeling unwell. It's estimated around 250,000 people in the UK have CFS/ME. Anyone can get the condition, although it's more common in women than men.

"I was Mrs Hyperactive - I was known for being very enthusiastic and hyperactive throughout my life, "Jo admits. "I've always been that one who's quite bouncy and lively but CFS/ME took away my personality because I didn't even have the energy to have one."

CFS/ME was 'in the post'

It's only now that the brakes have been applied and Jo has reflected on the months leading up to her illness, that she readily admits CFS/ME 'had been in the post'. Jo pinpoints the onset of labrynthitis in February 2013 as the start of a downward spiral in her health that was compounded by several stressful life situations including family and relationship problems and the threat of redundancy at work.

"In January 2014 I was still recovering from both a stressful year and labrynthitis so I got a severe virus it completely floored me," Jo recalls. "I've had flu before but this was instant and my body stopped working properly from that moment on.  I tried to get up and 'at it' and do things: fly to Ireland and go to my best friends 40th, go out for dinner with my friends - I was pushing myself saying 'oh come on, get rid of the virus' and it will go… but it didn't."

Help is available

Jo was referred to the Essex Chronic Fatigue Syndrome Service run from Southend Hospital. The service assesses people holistically (Biopsychosocial) identifying what physical symptoms they may have, how these symptoms are affecting their lifestyle and how these changes have affected them emotionally.

The service will look at activity levels helping to pace energy, resolve sleep problems, diet, stress and relaxation and help people to understand how their thinking can affect how they feel and what they do.

Their aim is to work with you toward recovery using guidelines recommended by NICE (National Institute for Health and Clinical Excellence). Jo had one-to-one sessions with their occupational therapist, Selena Walters, and their cognitive behavioural therapist (CBT), Linda Simpson.

"The crux of the support was giving me the ability to deal with the stress of having this condition as it was exceptionally traumatic to suddenly have a body and brain that didn't work properly," Jo recalls. "CFS/ME affects the nervous system and I knew that if the nervous system is not in a calm state then it will not be in a healing mode because the body will constantly be in a state of stress or 'fight or flight' mode, so it was a priority to calm this in order to heal.

"We also did a lot of CBT to deal with the trauma of the previous year and the build-up to the illness. I also blamed myself for getting ill so Linda and I worked together to shift that blame and to recognise that it wasn't my fault - that was a very heavy burden to lift."

Linda said: "Jo is a more likely candidate to develop CFS/ME because of her perfectionism and living life at a 150mph - the Type A personality.  It's a combination of life stresses and often a virus is the final straw. I sometimes use the analogy that CFS/ME is like being burgled and the alarms are set off but when the burglar leaves with your treasures, the alarm is still on. So a virus can enter your body, leave but your body's alarm is still on."

Dealing with the stigma of ME

CFS/ME sufferers have to deal with the social stigma of the illness and reluctance from both the public and professionals to accept the illness even exists. Jo soon discovered that having an 'invisible' illness meant that people found it difficult to understand what she was dealing with and why she wasn't acting like her old self.

"My friends and family are used to the fun loving, outgoing Jo and they didn't really comprehend what it meant to have CFS/ME so I felt had to justify and explain my illness and actions a lot." Jo admits.  "If I had been in an accident, for instance, had broken bones and been told it would take years to recover from this then I'm sure the 'get well soon' cards, flowers and sympathy would have been flowing because people can understand that. That wasn't the case.

"The majority of people have the connotation that CFS/ME means you're just a bit tired so should just have a cup of coffee and crack on. The reality of having a neuro / immune disease is far, far different from this but it's such a complex illness that I can understand why people don't appreciate the seriousness of having CFS/ME and its life-altering effects.

"My mum and my sister took the time to research and comprehend the condition, were a shoulder to cry on (many, many times!) and most importantly took time to listen. This support has been invaluable.  Many others seemed to think I was being a hypochondriac and it appeared they lost interest in the fact that I was still so ill after so long!

"Unfortunately, this has fundamentally changed the relationships I have with some people in my life. My advice would be that if you have a friend or family member who has CFS/ME, take time to try to understand it and listen. Your interest alone will mean the world."

More empathetic

In some ways CFS/ME is the worst and best thing to happen to Jo. The worst because it's the antithesis of everything she stood for and the best because of her commitment and drive to overcome it and improve her overall health.

"In retrospect, the changes I've made have actually improved my life, even though it was hideous having CFS/ME," said Jo. "I would never wish it on my worst enemy. In terms of how it has changed me, I think the number one thing is that I have much greater compassion for others. I especially have a huge amount of empathy with other people with invisible illnesses."

Recovery is possible - be your own medical detective

Jo is a perfect example of how you can overcome this debilitating illness. Jo has harnessed and reined in her Type-A qualities and now uses them to find the best combination of treatments that work for her. In her own words, she has become a 'medical detective'.

"Always believe that recovery is possible," Jo proclaims. "But you have to stop putting the responsibility of getting better on somebody else and having the expectation that somebody else is going to 'fix' you. You've got the power to do it and you just have to start one small step at a time. Don't think that your body is working against you; all the body is trying to do is get to that homeostasis - it wants to get better. So work with it, listen carefully to it and be patient.

Jo is now a nutrition & weight management specialist who also works as a health improvement practitioner within the NHS, helping people with weight management issues and to stop smoking habits.

Jo shares her recovery tips 

  • Nourish and hydrate yourself. Ditch the junk and eat as clean and green as possible. Avoid stimulants like caffeine and sugar - these are fake energy.
  • Get into a routine and put some structure into your day. This will enable you to see improvements.
  • Practice good sleep hygiene and keep a regular time to go to bed and get up.
  • Allow for some "me time" every day. Rest, relax, restore energy and calm the nervous system. Use meditation, deep breathing, listen to music or just sit in "nature" and be quiet.
  • Do something that brings you joy every day. Laughter is tricky when you feel so ill but it is very healing.
  • Remember that a good day is just a good day and not necessarily a recovery. The nature of CFS/ME means it fluctuates so don't overdo it. Small steps are key to recovery.

The Essex Chronic Fatigue Syndrome Service, runs from Southend Hospital and can be contacted on 01702 385247. You can also email them at cfsservice@southend.nhs.uk.\


PHOTO (l-r): Jo Redfearn and Linda Simpson (cognitive behavioural therapist (CBT).