Claire Fabb (Director of Style by Yellow Button) and I used to be neighbours in the beautiful Northern Beaches of Sydney many years ago. We enjoyed tea catch-ups and kids swimming lessons as new mothers with our first babes.
Fast-forward 10 years, and although I’d moved away and hadn’t seen Claire much, we have both been through some strikingly similar experiences, namely being struck down with Chronic Fatigue Syndrome.
My story is similar to Claire’s in that I faced some very stressful times in both my professional life and personal life, and after barely being able to get out of bed due to extreme fatigue and body aches and pains and numerous tests, I was soon diagnosed with Chronic Fatigue and Fibromyalgia by my GP. I was practically on bed rest for a year. That was 5 years ago. Thankfully I am much better now but I will never be ‘normal’, as is usually the case with all CFS sufferers. I continue to suffer from fatigue and sensitivities, and have had to completely change my life.
Claire and I recently caught up when she asked me to be a wellbeing contributor on Style by Yellow Button, and as I’d recently moved back to Sydney, we were long overdue for a catch up. This is when I discovered her ordeal and battle with CFS. We decided it was only fitting that my first article here be on the very thing that had changed both of our lives since we were last neighbours, Chronic Fatigue Syndrome.
If you or someone you know has suffered from Chronic Fatigue (CFS), you have probably heard some of the ancient beliefs such as it’s all in your head, or that you should just snap out of it. If only it were that easy.
Believe me, when you suffer from CFS, you would probably do anything in your power to get better; you wouldn’t wish it on your worst enemy. And it’s not just the overwhelming and debilitating fatigue, but the Fibromyalgia which often accompanies it. Fibromyalgia causes horrendous body aches and pains, and personally that was almost worse. You know that awful feeling you get when you have the flu? The one that makes you ache from your head to the tips of your toe nails? The one that makes you feel like you’ve been hit by a bus and you’re going to die? That you are just so thankful will only last a week or so? Well imagine that all the time, for months and months and months, often years and years and years. It’s really not something you want to experience. That is what Chronic Fatigue and Fibromyalgia is like.
So what is this horrible and debilitating illness Chronic Fatigue Syndrome knocking down all these healthy and capable men and women like Claire and I?
The latest from the medical world says that CFS, otherwise known as Myalgic Encephalomyelitis (ME), is a complex neuroimmune condition with a multitude of symptoms related to the immune system, gastro-intestinal system, endocrine and cardiac systems and to the brain.
Since 1969, ME has been classified as a neurological disorder by the World Health Organisation.
Myalgic Encephalomyelitis means:
So what causes ME/CFS? The short answer is, we still don’t know.
There are often multiple factors involved such as:
- an infection
- severe physical or emotional trauma
- exposure to chemicals
- a genetic predisposition
The symptoms of ME/CFS are varied however the primary and overwhelming symptom is extreme fatigue as a result of minimal exertion, which is usually long term.
Other symptoms include:
- body aches and pains
- recurrent flu like symptoms
- sore throat
- gastrointestinal problems such as abdominal bloating and pain, irritable bowl syndrome (IBS), food and chemical sensitivities
- dizziness and balance problems
- body temperature issues
- neurocognitive dysfunction – short term memory loss, confusion, disorientation, impaired concentration, and a sensitivity to external stimulus i.e. to sound, light, noise and emotions.
The severity and duration of symptoms vary from person to person, but usually require extended periods of bed rest and at times require wheelchairs for mobility.
So what should you do if you have CFS/ME?
If you do have chronic fatigue you have probably already discovered that our doctors don’t have all the answers yet, so sufferers have a tendency to try anything and everything to try and get better. Some things that seem to help are:
What should you do if you know someone that has CFS/ME?
The first thing to recognise is that the person knocked down with CFS/ME may well have been a very capable person and may feel completely uncomfortable about asking for help, so you probably need to use your best judgement and step in where you think appropriate.
For example, making meals, doing school drop offs or picks ups for kids, helping with laundry, helping with grocery shopping. Helping with all the every day things that take energy is a great start. Also driving them to and from medical appointments, taking them to the park if they are able to get out to sit in the sun, and just to be there to talk and be a support, are all great ways to help.
There is nothing more depressing than being sick with no end in sight, so we can all use good friends and family support during these times.
For further information you can visit www.emerge.org.au
The Mindful Mentor