FAQ’s In Conversation with Linda Jones – Survivor of Chronic Fatigue Syndrome
What is Chronic Fatigue Syndrome, and more so, why should we care?
Chronic Fatigue Syndrome (CFS) is another term for it is Myalgic Encephalomyelitis – it is a long-term condition in which individuals suffer from extreme fatigue and unrelenting exhaustion that is not helped by rest. Imagine living with permanent jet lag, combined with an extreme hangover that never ever leaves you. And you don’t know why this happens, or how to treat it.
Describe how it physically affected you?
The main symptom is a debilitating fatigue, but there are many others including pain, brain fog, dizziness, nausea and sleep problems. For me personally, I lost six years of my life. I remember bits, but not most of it. I lost my home, marriage, everything. I felt exhausted as I never had before, so much so that I couldn’t straighten my fingers and my legs would shake if I tried to stand up. I had such deep exhaustion that I had to crawl up the stairs on all fours to get to bed most nights.
Why is there such little awareness of CFS as a serious illness?
The persistent lack of information and evidence surrounding CFS has led to a history of negative stigma around it. It is a condition that can go undiagnosed for years as patients often face disbelief and dismissal from doctors and those closest to them, which further damages their mental health. My GP was lovely and tried to support me, but had no idea what to do when I was finally diagnosed with CFS/ME. The private consultant I visited told me it was ‘in my head’. Even today it continues to be a condition that many practitioners do not understand enough to diagnose and treat properly.
However, as we continue to see more cases of conditions like CFS, as well as an increase in other immune-related illnesses plague individuals in our highly stressed society today, we need to relook at how we define fatigue.
Fatigue by definition means “extreme tiredness resulting from mental or physical exertion or illness.” So, of course, it seems preposterous that happy, healthy individuals could experience crippling fatigue without exerting themselves or having an underlying condition to those outside their world.
Who can suffer from this?
Chronic Fatigue is a condition with more than 20 million sufferers worldwide, with over 250,000 in the UK alone. Seemingly healthy patients suffer from unrelenting exhaustion and pain while often becoming extremely isolated, depressed and anxious with the sharpest and fittest of men and women often brought to a staggering halt because of it. I was a fitness fanatic driven by a high pressure corporate life, and reached a point where my memory was so fragmented, I struggled to even string a sentence together.
Aside from sufferers of CFS, conditions like Cancer, Fibromyalgia, autoimmune disorders and many more show Fatigue as one of the most prominent symptoms. Living through a global pandemic and a rising economic crisis is yet another cause for the increasing reports of exhaustion and burnout making Linda’s cause more relevant now than ever.
Does it take a toll on Mental Health?
Absolutely. The self-doubt and frustration at the sudden inability to perform basic functions can cause intense anxiety and dissonance. Sufferers are also plagued by societal pressures and judgement from those around them. It’s not difficult to imagine your boss telling you to “sleep it off”, or your family telling you to “stop being dramatic” if you complain of constant tiredness.
Research shows that over 50% of those diagnosed with chronic fatigue syndrome develop depression after onset. These numbers are only part of the picture as thousands go undiagnosed while suffering from feelings of anxiety, isolation and depression.
At what point did you decide to take your care into your own hands, and how did you personally overcome this?
CFS is a disease and illness that can’t be treated with a magic pill and it’s one that never truly leaves you. Shortly after seeking treatment and relief, it became clear to me that there simply was not enough research and information available to CFS/ME patients and that the only way I would survive it was to take care of my own treatment. For me, it was really a wakeup call – my body was trying to tell me something, multiple things.
With no help from doctors, after heavy research, exploration, and self help groups, I formulated a holistic treatment plan for myself that focused on nutrition and mindfulness first and foremost. I cut out wheat, dairy, gluten and started eating more nourishing foods and vegetables to cleanse my body. It was a combination of a lot of things that finally led to signs of improvement, including meditation, cranial-sacral therapy, and tai chi.
Within weeks, I was able to climb up stairs again. With time and many relapses, my road to recovery became more tangible, and it inspired me to become a health practitioner and start a small support group from home. This ended up getting funding from the National Lottery and turned into the Salus Fatigue Foundation charity.
What is the Salus Fatigue Foundation?
It is a charity that champions for awareness, nutrition advice, support and pain management for those suffering from fatigue. Thousands of people suffer from fatigue as a result of conditions like cancer, fibromyalgia, autoimmune disorders etc. of which many could even secretly be victims of Chronic Fatigue Syndrome. Fatigue as a symptom is very often dismissed as psychological or self-induced or an ‘overreaction to tiredness’ by doctors and peers. This is exactly what led me to fight for the cause of those living with burnout, exhaustion and constant tiredness, and provide a platform for them to address, understand and manage their symptoms.
How does the Foundation work?
We function as a space that provides all relevant knowledge, news and advice on fatigue and how to manage living with it. As opposed to articles on google, or books on fatigue, our Hub’s (explained below) content is designed and delivered by a team that has had first hand experience in dealing with Fatigue and has a decade worth of insight and anecdotal experience to share which brings immeasurable value to the process of recovery.
The Foundation has recently launched its new ‘Wellbeing Hub’, how does this differ from what the Foundation has been doing to date?
The hub has been specifically designed to provide helpful day to day management tips for people experiencing fatigue. It functions as a 90-day course and is broken down into 13 different modules which will be released week by week to encourage users to pace their learning and make lifestyle choices which can be realistically maintained over time. My first-hand experience taught me that the most common mistake people (myself included) make is taking up too much work after feeling a short period of relief from pain. This leads to a relapse and dampens the drive and spirit to keep trying. The Hub works as an assistant in your day to day life to help you slowly take on each aspect of your stressors, one by one.
Can anyone experiencing fatigue-like symptoms sign up to the Hub, or is it only designed to help people with diagnosed disorders?
Absolutely! Anyone experiencing fatigue-like symptoms can/should sign up in order to find ways to improve their condition. I believe in early intervention and prevention vehemently. I can spot a detrimental lifestyle from a mile away because I used to have one! We need to make a change in the way we live our lives, and it’s never too early. You don’t have to wait until your exhaustion physically stops you from going to work. Most of us are far from a state of wellbeing even without being diagnosed with disorders!
Is there anything in the UK that you know of right now that runs a similar Hub like this?
The Hub is unique because we are experts in the field of Fatigue Management, through the teams own lived experiences, working with people over the last 10 years, evaluation of our work, team of professional Health Practitioners and two the GPs on our Board of Trustees. Fatigue and Burnout is extremely difficult to identify and diagnose early on, treat and allow for return to normal life. We connect with people, understand, engage, support and educate people to improve their health extending to their families and friends. We know our stuff! We take people on a journey week by week to incorporate a gentle lifestyle change and therefore encourage them to adopt healthy habits linking into creating a long lasting life time change.
This Hub seems a remarkable advancement for sufferers of chronic fatigue, how have you found the response to it so far?
The Hub has been a lifeline for many where we can reach out to people on a global level. During the world’s current Covid crisis all will benefit from content inside the hub as Fatigue / Exhaustion / Tiredness is having an effect on everyone’s lives.
What our members say:
“My energy is starting to increase through making some small changes to my lifestyle”.
“I love the journey you have taken me through a week at a time inside the Hub. I feel like I am not on my own and a part of the Salus family through using the FaceBook Community”.
“I can’t Thank You enough for sharing your expertise and knowledge to help me make the changes to my health”,
“Salus you have inspired me to keep going – the videos are easy to watch and facts sheets are useful to keep me on track”.
What is the single most important thing you could tell a chronic fatigue sufferer from your own very personal and humanising experience?
It’s a tough journey and it takes time to recover with small steps. Have hope, feel inspired and believe that you will get your life back. I have, and so have many more so you can do it too!