7 June 2015

So I have mentioned this mystery health issue I have quite a bit lately, CFS. What is it? What causes it? And what can be done about it?

CFS – Chronic Fatigue Syndrome, sometimes known as Yuppie Flu, it is very closely related to Myalgic Encefemalitis and Fibromyalgia.

As the name describes, it is being chronically exhausted, to the point of even getting up to have a glass of water or trying to read a book being too much energy. It normally attacks young, industrious and busy people (thus its other name being yuppie flu) for seemingly no reason.

A little bit of background, I actually was a CFS patient from 2006 to 2009, 16 -19 years old it turned me into a old person. Going from a healthy teenager with the world at her fingertips to suddenly being bed ridden was awful. I relented and gave in (because unlike other illnesses, CFS cant just be overcome by the power of positive thinking and pushing through it) and just rode it out. Amazingly I slowly recovered to about 80% of my previous health and energy and have enjoyed a relatively normal life for the past 5 years.

What causes it?

Until (very) recently nobody knew. Thus it was merely known as a syndrome, the medical fraternity’s way of saying “we dont know what you have, why you have it, and we’re not even sure that you’re really sick

What can be done about it?

Until very recently, there was nothing to be done about it, doctors would pretty much send you home and told you to rest it off. A few disbelieving doctors would tell you to try exercise it off. So practically nothing, just a life sentence of being just short of bed ridden.

However, things have changed!

12 June 2015

I was re diagnosed with CFS only a little over 2 weeks ago again. I have been (as you know) getting more and more tired lately, even with doing simple and easy things. I have also has an extremely stiff and sore neck and back. So other than my frequent visits to the doctor in hopes that something can be found and fixed, I have been for a full blood works test (which all came back completely normal) and going to the physiotherapist my back and neck. At my last visit to the physio (who happens to also be a very dear friend of mine), I had to fill in a very detailed questionnaire , a few mechanical tests were done along with a bit of poking and prodding of my lymph nodes and I got told that I have Chronic Fatigue Syndrome (again).

Remembering it from before, all I wanted to do was burst into tears; I would rather have been told I have cancer and 6 months to live, because in my past experience with this insidious disease, it would be better to be dead – in my opinion. In agony and desperation I asked my friend and physiotherapist if, since I had it 5 years ago, there have been any medical advances in this particular illness. As she answered, I again nearly burst into tears, this time though, tears of joy, because YES, it is now treatable!

It is not treated by operations, nor medication, rather it is treated mechanically! Confused, sad and yet super relieved, I was told to book another appointment and look into reading a book called  “The Perrin Technique

CFS has again affected my life quite severely. My family, who are so kind and understanding, have thankfully taken up a lot of the slack I have had to release in my day to day activities. Sadly my pioneering has taken a severe turn for the worse and I am just waiting for the circuit visit later this month, but it seems very much like I will have to take a 6 month break from pioneering. Lastly, it has also affected my overseas trip, my family are very much wanting me to postpone my trip, and sadly I have to seriously consider that option due to my illness – not that I don’t want to go, because I really really really really want to go!

And that, my friends, is all I have energy today to write. If you or anyone you know has CFS, please read that book and find a physiotherapist or an osteopath who can help. I will tell you all more about it soon.

Now I spend my days sitting, reading or writing or just biding time in the garden. Pale and tired, but this too shall pass.



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