I hate to do this four days before Christmas but thanks to my crippled hands I can't vent my frustration by punching walls so I am going to do it on here instead.
When I tell people I'm in pain, they generally accept it. Inevitably there are always those twats that think I'm moaning over nothing, or that I must be fine because I was fine yesterday. But in general people are very understanding about the pain aspect of my condition. However, when I tell people I'm tired it's a very different story.
When I say I'm tired, I don't just mean I feel a bit sleepy. I AM EXHAUSTED. Anyone living with RA, or any other chronic autoimmune condition for that matter, will tell you that they have a lot less energy than pretty much everyone else they know. Imagine what you feel like when you have the flu. Your body is using all its energy to fight off the virus, and all you want to do is sleep. Well that's what is happening in my body all the time...except its using all its energy to attack my joints instead.
I often have to nap in the afternoons, even at weekends when I'm not as busy as I am during the week. Sometimes I am so exhausted that I don't have the energy to walk from the sofa to the fridge to get myself a drink. I skip dinner at least twice a week because I am too exhausted to even turn the oven on or boil the kettle, let alone cook something from scratch. So I think it's fair to say that I'm a lot more than just 'a bit tired'.
I think part of the problem is that I do my best to live a 'normal' life. I love going out on nights out with my friends, and being the stubborn person I am I refuse to let my disease stop me doing the things I love. So I often go out with my friends when I should really be in bed sleeping, and therefore they think that nothing is wrong. Recently I was invited to go for a few drinks with some friends; however on this particular day I had been driving for about five hours which had used up all the energy my body had allowed me for that day and I was absolutely shattered. Not wanting to seem unsociable though I forced myself to go but I warned my friends that I probably wouldn't be my usual bubbly self because I was tired. Sure enough I barely had the energy to even put a sentence together, but I was pleased that I had made the effort all the same...that is until a few days later one of my friends told me that he thought I'd been really boring. Somebody punch a wall on my behalf please. Or him.
A similar incident happened the other day. Almost every day after placement I come home and have a nap. It doesn't get rid of the fatigue, but it does usually give me just enough energy to function for the rest of the evening. The day of said incident was no different. At about half past nine, whilst with some friends, I opened my mouth to start to say that I needed to go to bed but was interrupted by one of them saying, "DON'T tell me you're tired, you had a nap this afternoon!" Somebody punch that wall again please.
So thanks to my shitty disease my so-called friends think I'm boring and lazy when actually I'm ILL. If my friends display such a complete lack of understanding of my disease then I've got no bloody hope in getting complete strangers i.e. the rest of the population to understand, have I. If you're one of my friends and you're reading this and you recognise one of these incidents to be you, I don't need or want an apology. I just need you, and everyone else, to try to be a bit more understanding next time I tell you I'm tired. I'm not boring and I'm not lazy - I have a chronic illness...as much as I try to act like I don't.
Rant over. I'm off for a nap now.
Love,
Cat x
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