Saturday, 16 January 2016

I'm Crohnly Sleeping

A difficulty I find in explaining my condition to outsiders, is the mere idea that it doesn't 'go away'. I don't refer merely to the base fact of it being incurable - more the daily symptoms that plague sufferers on top of the disease itself. 

For me the worst of these is Fatigue. 

Fatigue is not 'tiredness'. It's an intense, overwhelming and chronic exhaustion that never leaves no matter how much sleep you get. 

I go to bed early, getting my 8 hours wherever I can, I try to take naps when I'm able; it's all fruitless. Of course there are things that can be done to help combat it; like vitamins, healthy diet, alleviating stress and B12 shots; but again for me none of it helps. It's hard then to explain this utter exhaustion to someone who has never felt it. 

Without a word of a lie, I genuinely feel like I need to go straight back to bed the minute I wake up
How do I explain that I am shattered when it's my day off and I've literally done no more than reach for a biscuit at regular intervals? All that follows is a stream of "You've got a cheek!" and "Listen to lazy bones here!" style retorts (repeat to fade). Or worse, I'm met with genuine irritation from the other party involved - as if I don't have a 'right' to be tired. 

I cannot (calmly) express how humiliating and shaming it is to be called 'lazy' due to something out with your control. 

Feeling constantly awful and exhausted is HARD WORK. So too is holding down a home and a full time job on top. If then I want to sit and do nothing for a few hours I'm not 'lazy'. Does the same apply to you? If you've worked all week and want to enjoy a lie-in or a long nap on the couch - are YOU lazy? 
I sometimes feel perhaps if I were hungover and lounging ("dying LOL!") on the couch all day it would garner more respect and even sympathy than wanting to take a break from being steamrollered by an incurable disease. 

Please don't get me wrong though, I don't want sympathy. I certainly don't demand respect for something thrust upon me either. 
Perhaps just a little understanding though? 
When I tell you I'm exhausted, I'm EX-HAUS-TED. Not because I've done a million and one things and need a lie down, but because I've done one thing: WAKE UP. That in itself is all it takes to floor me. 

You know that feeling you get when you're awakened too early and you can't quite focus or shake yourself into life and spend the rest of your day one step behind yourself? 
That's EVERYDAY. And to sound like a teen drama for a moment: it totally sucks.  

In the end it means we generally play things down, because it's embarrassing to feel 'different' sometimes, for fear of sounding like a broken record, or (and my biggest fear) for being thought of as a hypochondriac. 
So if you ask me how I am and I tell you I'm 'tired', that probably means I am one blink away from falling into a 10 year hibernation. If I tell you I'm 'fine' that means I'm definitely not but there's nothing you can do about it, and if I tell you I'm 'good' it means things are OK. I'm coping and you needn't worry. Just don't applaud me for feeling 'better' too soon because I'm not - but at least I'm AWAKE and that's all you can ask for now.

1 comment:

  1. I have MS and, like you, the fatigue is the worst of all the symptoms I experience - even the pain. Pain comes and goes, but the fatigue is constant. I too work full time, which is in itself a struggle. Fatigue doesn't just affect my body, it clouds my thinking and gives me cotton wool for brains. I feel like I've taken sedatives, I forget my words mid-conversation and I forget what task I'm working on - while I'm doing it!

    I tried explaining to people that I wake up feeling like I've just walked 10 miles through knee-deep mud, but they didn't understand. When people said "but you were fine yesterday/this morning", I would get annoyed and lecture them on "Spoon Theory". Now I just sigh and say, "I know. It's shit, isn't it(?)"

    It's impossible to understand fatigue unless you personally experience it. Even medical professionals, who are supposed to know everything about your disease don't fully understand it. They can't. It's definitely a "you have to experience it to understand it" kind of thing. I truly believe that.

    So, I say I'm fine when I'm not and grit my teeth when the ignorant comments invariably make an appearance, because I simply don't have the energy for a debate or argument on the subject. As a colleague is fond of saying, they're getting none of my pie chart!