I am a 46 year old female and have lived with ME/CFS since 2011 – although I was only officially diagnosed in 2014.
I often look back on my life and wonder how a motivated, on-the-go, highly organised HR Consultant, Trainer and Facilitator with a passion for life and people could become what I am now.
We were living in Shanghai, China when I first fell ill. I had just started working part time for the same company my husband works for when I fell ill with fevers, headaches, severe weakness & exhaustion and massively swollen glands in my neck and under my arms. I never recovered. I quit my brand new job as I was incapable of concentrating for long periods and couldn’t deliver on project deadlines.
Over the next few months, I was transferred from doctor to specialist in Shanghai for endless blood tests and the exclusion of every illness known to man. My heart was fine, despite the diabolical chest pains. My blood was fine despite the dodgy readings. No viruses were identified and no one could explain why I was so exhausted that taking a shower required that I go back to bed for the day. I had to go to a hairdresser in the housing estate we lived in, to get my hair washed. Out of desperation, my British GP in Shanghai referred me to a British physician in Hong Kong who did another battery of tests. One test came back positive – Epstein-Barr Virus aka Glandular Fever (it apparently has a high false-negative/positive reading so that is why they hadn’t picked up on it in Shanghai). Given the time that had passed since I first fell ill and that I hadn’t yet recovered the physician speculated that I had “post viral fatigue” and assured me it would clear up in 2-5 years.
A year later we were transferred to New Zealand and two years after that to Australia. I was still battling epic exhaustion, swollen glands and chest pains but by now IBS, sleep problems, neuro-muscular spasms, sudden muscular weakness, allergies, sensitivity to light, sensitivity to strong smells and pain were added to the list; not to mention my personal favourite “brain fog”. I was utterly bemused and confused by my situation and couldn’t believe it was possible for one person to feel so awful all the time. I thought I was losing my mind.
My health worsened in Australia and my GP there discussed my case with her colleagues who suggested she refer me to The Chronic Fatigue Clinic at The Alfred Hospital in Melbourne. My GP conceded that she did not know a lot about ME/CFS but felt this was my best option. It took four months to get an appointment at the ME/CFS Clinic. After a lengthy interview with Dr Oldmeadow he advised me that I hadME/CFS and explained what the medical world did and didn’t know about it. The list of what was not known was very long indeed. I was devastated.
Post my diagnosis I did what any good A-type personality does, I vowed to research the illness and find a cure. (A note for the newly diagnosed – researching with brain fog is like herding cats). I still laugh at my naivety.
Whilst in Australia, I:-
Went to the Active Health Clinic where I worked with an exercise physiologist on a Graded Exercise Therapy (GET) Programme. My limit was walking for two minutes. But that all stopped when I gradually became housebound and bedbound again. GET has since been largely discredited.
Consulted a homoeopath – but most of the stuff we tried made me ill due to my gut problems.
Consulted a psychologist to help me come to terms with the fact that I had a chronic illness from which I may never recover from.
Started using an ME/CFS App to monitor my activity (physical, cognitive and emotional) and my symptoms so that I could find my post-exertional malaise (PEM) triggers and find my energy baseline (any activity in excess of that baseline would worsen my symptoms).
Joined Emerge Victoria – the support foundation for people with ME/CFS in Australia. On their recommendation, I did an online course on managing Chronic Fatigue and Fibromyalgia based on the book by Bruce Campbell. For the first time I felt that I had some “tools” that I could use to “manage” this diabolical illness. “Pacing” and “living within my energy envelope” became my new mantra.
Joined a wonderful Australian support group on Facebook and for the first time realised I was not alone. We share our highs and lows, our brain fog comedic moments, our frustrations and joys, compare notes on what medicines and therapies have worked for us and what hasn’t, what snake-oil salesmen and charlatans are to be avoided etc.
My life now is structured around planning for an activity and recovering after that activity. I can rarely spontaneously participate in anything. Doing my hair and make-up before going out is not a possibility. I can do one or the other, otherwise, I have to start early in the day and rest before going out. I battle with dizziness so I can’t always drive myself. I used to love reading, now I battle to read and recall a magazine article. I ran for the South African club when we were living in Thailand, now a conversation involving more than two people takes intense concentration and leaves me in a twitching exhausted mess. Staying upright and walking for any length of time dramatically worsens my symptoms so I now use wheelchairs in airports and browsing around shopping malls. Unless I improve significantly I will never work in the HR field again so I am no longer able to contribute financially to our household. In short, everything has changed.
I am blessed with a wonderfully supportive husband who only sees what is possible. We plan holidays and activities together and he is often more practical about my abilities or lack thereof. We try to focus on what I can do and compensate for what I can’t. So we live life differently than before – but we still live.
In January 2016 we were transferred back to South Africa. I am thrilled to be home, but saddened at the lack of support for South Africans with ME/CFS. I hope through sharing my story we can educate South Africans about this illness and through creating awareness, facilitate the establishment of support services and better medical care.