Wednesday, 27 July 2011

Apt Description of CFS

I've pinched this from another blog, because it's so accurate. Click the title of this post to view that blog. The only quibbles I have with it are that it forgets the constant agony in our limbs,  I wouldn't have deleted the nausea part, and I certainly wouldn't say 12 years is the maximum .. sadly.


A LOT of people with Chronic Fatigue Syndrome struggle to describe their condition or its symptoms. I don't have that problem.

It's a relatively simple equation, it just needs a bit of imagination. Think back to the worst hangover you've ever had.

The one when you get home at 4.30am, barely able to stand and then your alarm goes off seemingly before your head even hits the pillow to tell you the hardest working day of your life is about to begin.

Now take that hangover, delete the nausea, and turn the headache down from a Spinal Tap 10 to the irritating hum of a Level 5.

As you stagger from your bed to get dressed, imagine that the top layer of your ensemble for the day is a 20kg lead blanket that you will wear like a shawl over the back of your neck, top of your shoulders and top of your back.

Now imagine yourself with no sleep, slouching under the weight of the blanket walking 10km to work, to ensure that you are completely out of energy, with a list of 40 names and 40 phone numbers that you are to memorise by the time you get there.

Fast-forward to 3pm, when you are praying to a merciful God for just five minutes of sleep as the weight of the lead blanket feels like it is collapsing your lungs, you recall about six digits from the 40 phone numbers and none of the names and your boss isn't happy about it.

You ache all over and the last three grams of your energy are being used to stop yourself from grabbing something sharp and plunging it into the chest of the 55th person who has got on your nerves that day.

Take that mental image of yourself at 3.05pm on the worst day of your life, and imagine how you feel, physically and mentally. Welcome to the wonderful world of Chronic Fatigue Syndrome.

The good news is, with CFS, you don't have to wait until 3.05pm to feel this way.

When you have it, this is how you wake up every day, whether you have had eight, nine, ten or two hours' sleep.

Everything you do in your daily life is now a major event, and takes massive amounts of effort and energy that you just don't have to give.

Summoning the energy to swing your legs over the edge of the bed and stand up? It may as well be the a Marathon.

Even holding a conversation, without your mind wandering off and your eyes glazing over to make it seem like you don't care - even when you do - takes immense concentration on every word. By the end of the chat, you are physically drained.

Even finding out you have Chronic Fatigue is exhausting.

Doctors have no way of actually testing for it, so they test for everything else first, and rule them out one by one.

You're depressed, take these drugs. You have iron deficiency, take these pills. You have a brain tumour, have this scan. You need more/less red meat, water, caffeine, exercise, stress, alcohol, sleep.

When they finally decide it's Chronic Fatigue, they tell you there is no cure and you'll just have to wait it out, anywhere between six months and 12 years.

Big Bad Al

Waiting Waiting Waiting

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