Fatigue Score for non spoonies

I recently read a very good take on the pain score, describing what each number actually feels like.  It got me thinking about the fatigue score too.  Everyone who lives with a chronic illness which has associated fatigue will probably be familiar with being asked to score their fatigue out of 10.  10 being the worst, and 1 being no fatigue at all.  I thought it might help people that have never experienced it to try and explain, from a non spoonie point of view, what it feels like.

If you aren't familiar with the "spoonie" term, theres a fab description of how fatigue feels, called The Spoon Theory which can be found on a website called But You Don't Look Sick.  Have a look.  In broad terms a spooonie is someone who suffers from chronic fatigue, and a non spoonie, well everyone else.  All of you lucky enough never to have experienced the spirit sapping feeling, like swimming through treacle, of fatigue.

So the list below is my attempt to describe how each number might feel to a non spoonie.

1. You hop out of bed feeling refreshed after a good nights sleep ready to face the world.
2. You've had a rotten nights sleep, and get up feeling really groggy and wanting to go back straight back to bed.
3. That feeling you get mid afternoon, after a busy morning and a big lunch, when you feel like you just can't do any more and want to put your head on your desk and have a nap.
4. How you feel after a busy day at work, when you get home and don't feel like doing anything but putting your feet up, you're shattered!
5. You cycle the 8 miles to work, do a full day, miss lunch because you are so busy and cycle home again in the rain.  By the time you get to the front door you just don't know if you have the energy to climb the stairs to get into the hot bath you crave.
6. Your legs start to feel heavy and every step you take is an effort, you start to feel pain all over, every movement hurts. You feel like you could just fall asleep where you are.
7. Walking feels like swimming through treacle.  The pain is now starting to take over,  Even sitting still hurts all over.  Its like that feeling you get when you have influenza, proper flu, not a heavy cold.  You hurt all over and just need to sleep.
8. Putting one foot in front of the other feels like too much effort to be able to manage.  The pain starts to take over your thoughts and you struggle to focus on anything else.  You just want to get home to bed, while you can still make it rhough the front door, trouble is you can't make it up the stairs on your own now.
9. Getting out of bed takes Hurculean effort, you can't even manage to brush your teeth, can't stand up for long enough.  Your head is too heavy to be able to hold it up on your own for more than a few minutes.  You'd read a book, but you can't make your eyes focus for long enough.
10. Your body has completely shut down, your legs just won't do what your brain tells them to.  You hurt all over and the pain is immense.  The one thing you need more than anything else is sleep, but the pain, stiffness and other stuff make it impossible to get comfortable enough to get any sleep.  You feel like it will never end.

I wrote this remembering my pre-spoonie days.  I haven't been able to claim a 1 since I began my journey into MS, and I can count the number of 2's I've had in the last 6 years on my fingers (probably one one hand).  A good day for me these days starts at a 3, and I'm often at a 4 by the time I get to work.  Most days I'm at a 5 when I leave work, but quite often well on the way to a 6.  Bad days mean getting up at a 5, or sometimes more, and can easily hit 7 or 8 by lunchtime, these are the days when I wonder how I manage to get myself home.

Thankfully these days I've learned to recognise the signs and know my limits, well most of the time, so I don't hit 10 as often.  But it still happens, and sometimes the MS has its own ideas and accelerates me straight to 10 for no particular reason.

So if you know someone with a chronic illness who suffers from fatigue, just remember you can't see any of the above happening.  When I start to hit the higher numbers I get really rosy cheeks, and someone will always tell me how well I'm looking, when I'm feeling at my worst, so far I haven't thumped anyone, mainly due to not having the energy!  Please remember fatigue is an invisible illness, and resist the urge to tell someone they don't look sick!