Me, myself and my M.E

My blog is here to show people how a chronic illness affects your life and how it can be restricting. I’ll be writing mainly on my bad days, when I feel I can’t do anything. Hopefully sharing stories with other sufferers may help someone.

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Lady Gaga

I totally feel for Gaga at the moment. As someone who suffers from chronic pain everyday it is hard to fit normal things into your life. I rest before doing anything and after and sometimes I don’t feel any different. Imagine the spoons analogy, today (instead of an infinite number), I am going to give you three spoons, that is to do everything, okay, well one spoon, used for getting up, another to get your breakfast, another to brush your teeth, oh shit I’m out of spoons! Yep, that’s what it’s like, your spoons are gone, you are fucked and you can’t do anything more until tomorrow!

So, when I say I’m going to do something, it is a huge undertaking and quite likely that I’ll be in pain both before, during and after any event. When I say event, I actually mean anything. Everything comes down to energy now, (or spoons) and I measure my life like that. There is no other way.

I don’t mind people wasting my time because it takes two to waste time, just don’t waste my energy. Get to the point and the energy we spend together is generally my choosing, that’s why my energy is cherished these days. I don’t want to listen or be involved in drama, it is very draining.

So whilst all you lovers of Gaga bemoan the fact that she will have done her best, believe me when I say she needs to rest. Knowing when you need to rest and pushing yourself with any chronic illness will make you suffer in the long term. It has certainly taught me who my friends are.

Over and out, the ginger one. Make love, not war. Xx

About last night…

PAIN: 8

FATIGUE: 8

WIRED: 8

Here I am laid in bed but in a lot of pain. All I wanted to do was go out last night and within an hour I took a painkiller and the pain was still there.

I tried to enjoy the music but couldn’t. I got sensory overload with the sound and the lights so I didn’t drink at all. I did everything I should have done and I still ended up in a lot of pain.

I had to come home early, earlier than I would have liked and yet I was only out for five hours. I think I’ve had about four hours sleep and it’s not real sleep. I don’t feel refreshed. I feel like my right arm is pinned to the bed. I can’t move it. My eyes feel like they are burning like I have flu, they can’t stay open but then I can’t go to sleep.

Today it is very doubtful that I will be able to do anything other than make a cup of tea. This is what people don’t see about M.E. They don’t the see the after effects. They don’t realise that I can’t stand up all night.

I can’t do the things that normal people do, yet supposedly there’s nothing wrong with me. This is why I don’t let people into my life. It’s hard to try and be normal when your body clearly isn’t.