Exhaustion

What does it mean to you?

I'd really love you to think for a moment. Is there a time when you could honestly say you felt exhausted? What had you done? How long did it take? How long did it last? How did you feel?

I don't mean a bit tired. I don't mean too many late nights or the pleasant aches of a day or two of heavy gardening. I mean burnout. The total inability to get out of bed or walk up the stairs or leave the house.

Maybe you had twins and suffered sleep deprivation for months on end. Perhaps you were a high flying workaholic who literally worked yourself into the ground. Perhaps you were struck down by a mystery virus that left you helpless and useless. If you've ever had major surgery, you might remember that even having a bath or walking to the nearby shop left you incapable of doing anything but going back to bed.

When someone with a chronic illness or disability says they're "exhausted" I think this might be the hardest symptom of all for able-bodied people to really understand.

There are countless auto-immune conditions like lupus or bowel disease that leave sufferers battling an almost constant exhaustion that can be worse than all their other symptoms combined. Many other conditions list exhaustion as one of the main symptoms including heart disease, cancer and lung disease. Medications used to treat illness or disability are often debilitating in themselves - chemotherapy, TNF-Alpha blockers, anti-psychotics - the list is endless.

I'm exhausted today. First a party, then a 3 year old who doesn't feel like sleeping at night, then a 260 mile trip to Cambridge for hospital, to say nothing of the endless articles and campaigns squeezed into the gaps have slammed me into the sofa. I'd be in bed if bed were an option. I'm sure those at Broken of Britain and other online disability groups won't mind me saying that they're exhausted too. The effort of making campaigns like One Month Before Heartbreak and Project V successful cost us all dearly and you'll normally find that for days afterwards, their twitter feeds go silent, their mails left unanswered.

We'd love to keep going. I can't tell you how much we'd all like to bang away at this 24/7 until our voices are heard, but we simply can't. And I do mean can't. Remember, my life's motto is "there's no such word as can't" but true exhaustion makes a lie of it. How will I collect my 6 year old from school later? How will I make lunch? Who will get the toddler dressed? Forget tidying or cooking or washing, I'll be lucky to make it to the loo. Literally. It's about 15 steps away - not even upstairs - but the effort seems inconceivable.

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I broadly accept the argument that most people are better off in work. Being unable to work is depressing. It makes you lose confidence in your talents and abilities. It is insular and isolating.

I am, however, still waiting for just one MP or minister or health assessor to tell me exactly how people with conditions that cause permanent debilitating exhaustion (not to mention all the other painful, debilitating or embarrassing symptoms they deal with) are meant to hold down a job. Often an attempt to mould our mutated genes into any kind of routine just makes things worse - we get sicker, we feel more exhausted and we put ourselves swiftly into a hospital bed. So no, work isn't always the best answer or even viable. 

Yet, it is these very conditions that are most often refused state support ( it's almost unheard of for anyone with a "long term variable" condition to get DLA for instance) They are the most likely group to be put into the Work Capability Support Group of ESA, meaning that they now have just one year to find employment that replaces their benefits or they will no longer receive any help at all. Nothing. Their entire ESA payment will be stopped. Nearly £5,000 a year stripped from worthless nobodies in the eyes of our society. 

Exhaustion holds all the cards. When it hits, you're incapable of doing a thing about it. I know you probably won't believe me if you've only ever known "a bit tired" but it's true. Our bodies use real exhaustion as the very last warning - "rest or you'll die." I'm really not using overly-dramatic or emotional rhetoric, it's just the truth. If we had nothing else to battle - and some of our battles are mighty - exhaustion would be enough.