A soft, sombre rain quietens the world beyond the glass. A cool evening breeze encircles the room around me. "What time is it?" I wonder aloud to no one in particular. Sitting up, I nudge the power button on my snoozing phone, "Not even eight!" I sigh and collapse back into the pillows, thinking of nothing and of everything all at once. As I gaze up to the ceiling, the electric lamp throws nostalgic light across the room and I am transported back a year.
I had not long graduated from the University of Hull and had moved back to the motherland: Birmingham. Whilst taking a break from Uni -I planned to return to academia to become a master in 2016- I started a full time job as a chef at a local gym. As my memory serves me, I don't recall ever stopping over those busy six months. Unfortunately, I wasn't allowing my body time to replenish its energy stores, and I certainly wasn't eating well; it's amazing how unappetising food is after you are surrounded by it all day. I was also struggling to shake a bad cold that had been clinging to me for a while. Lo and behold, on the way back from London on an overcast evening in November 2015, I began to feel extremely unwell. Here follows my story -one of many out there- of invisible illness.
Earlier this year I was diagnosed with Chronic Fatigue Syndrome, a debilitating condition that has turned life as I know it upside down. Myalgic Encephalomyelitis, to use its medical name, is an illness which affects 250,000 people in the U.K alone; an illness for which there is currently no cure. Chronic Fatigue Syndrome usually develops between the ages of 20 and 40 -although I have read of others who are outside this threshold- and is mainly seen in women; thank you X chromosomes. Unsurprisingly, the main symptom of this illness is -you guessed it- fatigue. I feel it imperative to clarify (for sufferers and non-sufferers alike) that the level of fatigue experienced by those affected is not merely a tiredness that goes away with rest: it is a state of being which makes the mind cloudy, the body ache and renders the legs useless. Happily running alongside the fatigue component is a plethora of other symptoms, all of which vary person to person: vertigo; muscular and joint pain; headaches; photosensitivity; poor memory and concentration; achy muscles; muscle weakness; depression; anxiety...the list goes on.
As a moderate level sufferer who is mostly housebound, the symptoms which plague me the most are the ones that affect my head and legs, respectively. Once written down, they become not too dissimilar to an item from the devils pantry. See if anything takes your fancy:
Vertigo: Enjoy walking? This little cracker is sure to make travelling from A to B a trippy experience.
Brain Fog: This delightful delicacy makes concentrating on something near on impossible and ensures all things fuzzy.
Hyperacusis: This dish is sure to make the sound of your own voice grate on you.
Disassociation: Can't wait until the weekend to escape the throes of reality? Ordering this powerful beauty comes with a side of cold water for you to splash on your face.
Muscle weakness: This exciting refreshment will have you judging where you can next sit down.
All joking aside, I'm still getting used to the daily onslaught these bad boys serve me. This level of being out of control often leaves sufferers terrified of leaving the house; something I myself have been working on with meditation and very gentle yoga exercises.
The quintessence of Chronic Fatigue Syndrome is a gem hidden in the acronym of 'PEM', and is something every sufferer strives to avoid. Post-external malaise is the name given to the highest achieving symptom of Chronic Fatigue Syndrome, and usually occurs when the sufferer has done too much within the limits of their illness; for me, this would be a fifteen minute walk. Overdoing it results in the heightening of all other symptoms, and can leave the sufferer bedridden for some time. It is the worst thing I have ever experienced in my life; fear of it adding a nervous edge to attempting anything remotely normal.
The only recommended treatment for CFS is Graded exercise therapy (GED), Cognitive behavioural therapy (CBT), and medication to aid pain, sleeping and depression. Needless to say there are mixed views on both: if mild exercise aggravates symptoms, GED may induce Post-external malaise; it's not all in our head, honest. As with any treatment plan, what works for one person may not work for another. I myself remain hopeful that through Graded exercise therapy I can slowly build up my activity tolerance, raising the bar of fatigue. With the added combination of a good diet, meditation, self-belief, alternate therapies -such as reflexology and massage therapy- to aid relaxation, it is possible to recover. While there may be a long road ahead of me (nothing worth doing is every easy) I am going to fight this illness with everything I've got. Now, if you'll excuse me, I'm off for a lie down.
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