Exhaustion: The difference between you and M.E

That awkward moment when you try to explain how exhausted you are and someone has the gall to turn around and say 'yeah I feel a bit knackered now too'... Nothing is more better at setting me off, whether it be an internal mental rant or an outward rant at the person, for even thinking they know what feeling 'knackered' actually is.

Today I am having a pretty crap morning, my carer came in, one of the new ones -she's nice, but knows my mum- and I have to drag myself out of my haven that is the comfy pillow filled nirvana that is my bed. Today is getting off to a great start <insert sarcasm here>, because the first thing I want to do is go straight back to sleep. I am pushed in my wheelchair to the wet room, I do my morning ablutions and I’m pushed back and I’m allowed to get back into bed today...yesterday I wasn't although I’m not letting that happen again. I am Shattered, I am mental Scattered all over the place, and yet I log onto facebook to check my messages and even after all the posts I have blogged I can tell that this one person hasn't read them. Do you want to know how I can tell? Because he makes a joke about my mental capacity and being stressed out first thing in the morning when my symptoms are usually at their damn worst. I sent back the obligatory sarcastic response and to be honest, I’m quite proud that I thought of it considering how foggy I am today, I’m mentally giving myself a pat on the back for that one.

But like I said in the beginning, people feeling tired after a long day at work, or tired and feel better after a 5 minute sit down and a cup of tea, someone who is supposedly so tired they are 'ready to drop' and yet can still go out for the night or stand and do a full cooked dinner, someone who is exhausted from walking to the corner shop and having to wait to be served.... THAT is NOT exhausted.

The only people I have any sort of exhausted/tired relation scale to is those that have run a marathon and then asked to do a full day of living, job, looking after the kids, cooking, washing yourself, everything that a person does in a 'normal day'. THOSE are the only people that get any smidge of an idea of where we are coming from.

This is what makes me wonder whether people actually realised that even though I am up and functioning, I am digging deep into reserves that are becoming shockingly low to do so. I had an awful nights sleep which is par for the course, I don’t feel any better for that nights sleeps, actually I’m starting to wonder if actually trying to sleep and failing miserably at it is becoming a waste of time and I should just plod on... logically and realistically I know I can't do this. I MUST RESIST THE BOOM AND BUST!!!! But people with M.E. don't get to wake up in the morning feeling refreshed, we feel like we've been dragged through a number of hedges backwards and gone through a round with Mike Tyson... (although I am sure that he would go easy on me should we even meet in person, the press he would get for hitting the wheelchair girl would be immense. Although... maybe that would get 'US' some publicity, ….maybe I’ll think about it, I’ll take one for the team :P .)

But 'Boom and Bust' to the thankfully uninitiated is where we have a 'good day' (BOOM) and think OMG I’m on top of the world, we get done everything or some of things that have been needed to be done and then the next day we are 'Bust'... back in bed barely unable to move and back where we started.... and we stay there, it could be a day back in bed, a week or months... all because of that one 'Boom' good day. We are stuck in bed because we are Exhausted. There is NOTHING left, no energy, no reserves, and DEFINITELY no spoons.

Now that the mention of 'Spoons' has come up.... I’m thinking a few of you that are reading for sheer curiosity are thinking 'what the fudgicle is she on about flipping SPOONS for?' Well let me guide you through the spoon theory my friends.

The 'Spoon Theory' started one day when a woman called Christine Miserandino, don't worry Christine I’m not going to print it in full, your copy-right is intact- sheesh, was sitting in a diner (she's American) with her friend and her friend asked what its like to have LUPUS (another invisible illness) and to explain how she felt throughout the day she gathered as many spoons as she could and gave them to her friend and told her that she would take away a spoon for every action or thing that needs to be done during the day. You can't borrow spoons without consequences, but you can if you want to feel completely even more DREADFUL than you usually do anyway. 

 So for our purposes we will say we have 9-10 spoons. 1 spoon is for getting up, 1 spoon getting to the bathroom, 1 spoon for a shower and another if you choose to shave (man or female for ease's sake). So that is 4 already. I'll give you brushing teeth for free, but then you need to get to the kitchen, a spoon, cook something, a spoon and get back to wherever you started, a spoon.... that is a grand total of 7 spoons right there. So you rest, but resting doesn't give you any more spoons really, it just conserves them for longer, for later, as long as you don't do anything... A.n.y.t.h.i.n.g.... so I have 2-3 spoons left.... That would be eating, getting into my pyjamas and then getting into bed.... This isn't really including little things, talking, thinking, emotions, picking a cup up, opening a bottle, things like that.

So Yeh. That’s the spoon theory. It usually gets a reaction. Because whereas we (people with M.E./LUPUS/Everyone else with an invisible disease or illness) we have to plan things out, we have to look over in advance whatever we do, for wherever we go. We have to ask the questions; do we use a spoon on shaving or do we use a spoon on doing our hair? Do we choose use a spoon on making food or having a friend around for a chat?

And the reality is, when ours spoons are up, so are we, once our energy is gone, so are we. That is exhausted, that is tired. Others can take that term lightly, but to us, that term isn't when we say we are exhausted, it means we are nearly on our hands and knees, and need help to do the basic of things. I'm on of the unlucky/lucky ones. I'm unlucky that I’m ill, but I’m lucky, in a strange sick kind of a way, that I’m ill enough to be able to have carers in three times a day at the moment to help me conserve the energy I would lose, on getting my university work done.

So go back to me and you and the difference between 'exhausted'. The picture at the top says everything. 'If I choose you over sleep, you better feel F**king special', that is true, because we could be using our energy on the basics, instead we are spending them on you, because we feel that you're worth it!

But don't take it for granted please. Because even though you are special and awesome sauce, and brilliant and funny and I enjoy your company, some days I just don't have the energy to give you and its not an insult, and please don't think it in any way like that, its just me being selfish for once in a VERY long time and putting myself before everyone else.

Thanks again to everyone who has read my posts, thanks to my friend Joan in Orlando who has spread it around the United States for me, and Thank You to Mike at Drayton Crier for letting me publicise this blog on his page. But most of all thank you to those who have read it, taken something from it and passed it on. I know its a difficult subject, but that’s why I’m writing it, for everyone out there to read and go through the good times and the bad with me, so that others don't have to.