My daily routine living with . . . chronic fatigue syndrome

Imagine: you slip gently into the Land of Nod as a high-drive, progressive, active, healthy person only to awaken to an unexpected, uninvited invader. Under the cloak of darkness, it has stealthily and rapidly colonised your world, rendering you a useless, frustrated spectator in the brutish annihilation of your hopes, dreams, aspirations and ambitions. Your liberty and life as you knew and planned it, robbed and taken from you against your will. Just imagine!

Welcome to an insight into the life of someone waking up every morning to wage war on the invisible yet omnipotent tyrant otherwise known as chronic fatigue syndrome. You get sick, you don’t get better, as the days bleed into weeks, the weeks seep into months and the months normalise into years, you continue to disimprove.

Let me first articulate the insulting inadequacies of the name itself. It evokes a fluffy suggestion of nothing more than some sliding scale ranging from tiredness to exhaustion. It could be deducted from the name that a bit of sleep would cure all. However, even excess hours of sleeping fail to result in a refreshed awakening or even a sniff of a cure. A name has never failed a medical condition more degradingly.

CFS encompasses a vast and varied collection of symptoms which can at times be contradictory in nature – difficulty hearing/following a conversation yet any degree of noise can be painful, unbearable and nauseating. You endure a fatigue so debilitating you have near falling-asleep experiences while driving and toileting yet may lie awake tired but wired for hours. A light touch can leave you reeling in pain even more than that of a firmer touch. You crave the sun yet become zapped of energy and feel sunburnt despite being naturally sallow. Your duvet is a sadistic torturer inflicting unimaginable pain on your body but your intolerance to the cold prevents you from removing the offending stimulus. The list of contradictions is infinite and individual to each sufferer.

The facilities and services available for Sensational Kids

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‘Within my lifetime we could eradicate cervical cancer with the HPV vaccine and screening’

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Lane swimming: when time crawls by

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A wounded young man’s penis and scrotum transplant

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You don’t look sick

You don’t look sick yet your body feels as if it has done 10 rounds with Muhammed Ali. Your muscles, bones, skin and hair feel so brutalised it hurts to sit, stand, lie down, brush your hair, dress or even exist. Showering is not just an exhausting, dreaded chore – your body feels as if it is being attacked by millions of needles reigning down mercilessly.

There are days when your hair causes so much distress you would wish to opt for the Sinead O'Connor look. It seems as if your limbs have been replaced with those of an elephant. It takes Trojan effort to manoeuvre such lead heavy alien limbs. Those mini marathons are a long lost distant memory of the good old days. Your external appearance camouflages the struggle you experience trying to concentrate on anything. Your recall of basic words and friend's names elude you frequently. "What you call it, thingymejig and yolkymebob" becomes the new vernacular. Think Dory meets the Bermuda Triangle! With your dysfunctional concentration and diminished memory, you are rendered incompetent and begin to dread even basic social interactions. Once-small stressors now provoke disproportionate stress reactiveness in your system.

Even small, mundane banalities are insurmountable and you resent the excessively abnormal amount of your energy that it hijacks. Your fatigue is of a physical, mental and emotional nature from which there is no refuge. You are shackled by this unyielding demon.

Your exhaustion is further compounded by the energy it takes to lie. You lie by faking a smile to the world but this external denial of the war raging within pillages you of even more of your precious energy. The facade of pretending to be healthier than you feel is truly exhausting. “I’m okay” or “Fear of me” becomes secret code for: I am functioning with great determination on an empty fuel tank, at pain levels even Paul O’Connell would struggle to face down but I don’t want to appear to be a hypochondriac or allow myself to be defined by this misunderstood curse. The latter is one concession I refuse to make. Even breathing lacks spontaneity and proves a laborious but necessary chore.

It’s not difficult to understand why those around you mistakenly suspect that you must be depressed. You are forced to decline invitations, you are unable for meets-ups or even phone conversations, you become increasingly unreliable/unavailable/forgetful, in an attempt to conserve energy you speak as little as possible and it’s as if the humorous department of your brain has slipped into a coma.

You grieve for your ability to execute simple tasks, you grieve for the hellish present which makes you feel like the living dead, you mourn your now distant or lost friendships and relationships, you yearn for your able-bodiedness, your heart is crushed for the unattainable dreams and life plans your go-getter, high-drive personality expects of you, especially those limited by expiration dates.

Insomnia taunts you

In the dark of night insomnia taunts you. Your greatest fear becomes dying having never really lived. Let me be absolutely unequivocally clear, CFS is not a psychological illness. Positivity will not cure it. If willpower and positive mindsets alone could heal CFS, many sufferers would be Olympic medallists in their chosen fields from sheer positive mental attitude alone.

By now you have but imagined a mere micro-pixel in the true picture that is CFS. Despite its unrelenting assault, there is always hope. Yes, you are forced to compromise and make unwilling concessions but you must always convince yourself that bad times don’t last forever and that reinforcements are on the way. D-Day is coming and the light of liberation twinkles on the horizon. You must practise acceptance even if it is begrudgingly. Although your body is experiencing technical difficulties, give your inner Ninja credit for any effort or improvement made even if that was just to walk as far as your front gate and survive it. Trying to find the balance between pushing yourself and recuperating is a fine juggling act.

Turn your back on feeling guilty for all that you cannot do. Be thankful for the loss of insincere and toxic people who have exited your life and show gratitude to those who have stood shoulder-to-shoulder with you. These people are a rare and special breed for which no award would adequately reward them for their loyalty, empathy and compassion.

You must accept that life isn’t fair and allow faith to walk hand-in-hand with you on this journey that you are forced to take until the day when the subtle hint of feeling marginally better makes a flash appearance. Next-day regressions should not be greeted with hopelessness or fear that CFS is to be your forever foe. It might take years but eventually you will win small battles. That might have entailed you not falling asleep before the end of the trailers to a movie. Believe that there will come a day when you feel slightly better, as the days bleed into weeks and the weeks seep into months and the months blend into years, you continue to improve. Faith and defiance will be your trusted companions until that day. Remember every Goliath will meet his David!

I sign off with a heartfelt salute to all CFS superheroes and their courageous, self-sacrificing, unsung carers. xx

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