Friday, 26 April 2013

Who am I? and what is CFS/ME?

Who am I? Some days I have no idea - and not because I'm confused and going through some deep life changing transition but because I can't think past a wall of fog.

I have a condition confusingly named CFS/ME which stands for Chronic Fatigue Syndrome/Myaglic Encephalomyelitis. It has a number of names but due to it's complex nature, no-one really knows exactly what it is and so CFS/ME is used to cover all possible angles in terms of symptoms and seriousness.

Because it is a very serious condition and you underestimate it at your peril. I have had CFS/ME for 4 years now and did just that until the start of this year (January 2013) where 2 weeks into my second term at university my body finally could not keep up with the demand and gave up. I have since been fighting for some kind of control over symptoms and for some kind of life at all.

I am a 19 year old student studying psychology at a university in Surrey. Before I relapsed I enjoyed trampolining, gymnastics, baking, reading and singing. Since my relapse, I have been unable to do these regularly and sometimes even reading is beyond me.

The general journey (for want of a better word) of this illness is that something occurs to trigger it (such as a viral infection, stress, multiple bereavements -or sometimes it just occurs with no apparent reason) and the body suddenly, as in literally overnight, goes from healthy to on the brink of collapse from the symptoms below. Through careful lifestyle management and other possible methods, the body gradually, slowly, gains some strength and health. From this point, it is very possible that someone with CFS/ME may relapse back into the state they were at first if something triggers it. Or they may be immensely lucky and never relapse. Or they could relapse again and again. Unfortunately the relapse is much more common. Some people never fully recover from this - the research suggests this number is very large but the research is in its early days.

Please just stop for a moment and imagine a life where your body is too weak to do basically anything (sitting up in a chair feels as tiring as running hard) and what that means for your day to day, let alone your hopes and dreams. Life becomes full of 'oh that looks great... apart from... I can't do that'.

I do not intend this blog to be a constant rant of the negatives, but rather an education and raising of awareness for those who have CFS/ME or know someone who does.

Here is a quick, brief list of symptoms that I will describe further in a future post as there a lot of them and they deserve a proper explanation.
Extreme, debilitating fatigue          Concentration and memory problems        Pain          Post-exertional malaise      Immune deficiency        Sensitivity to sensory experiences and toxins       Food allergies and intolerances         IBS       Mood swings and irritability      Muscles weakness      Sleep problems including unrefreshing sleep.
The list of symptoms goes on for longer than this list but these appear to be the most common, salient ones.

Thank you so much for reading!

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