I've been struggling a little bit lately with a feeling that people don't understand what I mean when I say "I'm tired". So I'm going to attempt to explain what it is I feel.
My "awake" time
You know that feeling when you can barely keep your eyes open because you're so tired? Or when you've had a few late nights and get to Sunday afternoon and just have to have that nap?
That's me when I'm "awake". It's not always quite this bad, but at least half of my day is with that feeling.
So if that's me awake...what is my "tired"? This one is a bit harder to describe, but I'll give it a go...
My "tired" time
This is more the feeling you would get if you've pulled an all-niter, had a full day in the office where you've had to sit through numerous meetings and remember a whole list of facts and figures, then gone and run a marathon. Your body aches, your mind is mush, you can't process anything that is going on around you, you feel dizzy and downright exhausted. You get so anxious that if you don't go to sleep right now you're pretty sure you'll start to cry.
This is me when I'm tired. This usually hits me at about 9pm.
So if I say I'm tired, or if I bail early on a party (if I get to it at all), or if I suddenly shut off halfway through a rehearsal or dinner...this is why. This is how I feel.
Showing posts with label awareness. Show all posts
Showing posts with label awareness. Show all posts
Sunday, June 30, 2013
Friday, May 17, 2013
The beginning of awareness
This blog is more of a personal mapping of my journey with ME/CFS. Having ME/CFS I can't be sure that I'll blog regularly, but at least I'll have somewhere to go if I feel the need to write about my experiences.
I’ve recently been diagnosed with Myalgic Encephalomelitis (or as it’s more commonly known, Chronic Fatigue Syndrome). Since the diagnosis I’ve faced a range of reactions from people. The most common response I’ve had is “Oh I reckon that’s what I have. I get really tired”. Whilst I don’t doubt that these people do get tired, it is disheartening to realise that so little is known about the syndrome that the general public just thinks it’s a matter of simply being tired. Considering the name of the syndrome, this is not surprising.
ME/CFS is in fact a multi-system disorder. In order to get a diagnosis, the patient needs to show a range of symptoms across the immune system, endocrine system, nervous system, digestive system, reproduction system and cardiovascular system. These symptoms vary from patient to patient with varying levels of severity. I personally exhibit around 25 symptoms, with most effecting me on a daily basis. And I’m one of the lucky ones with what would be considered a somewhat mild case. There are people with it who end up housebound or even bedbound from it. So despite the seemingly simple name, it is in fact, quite debilitating.
Over the 10 years of me having this disorder, I’ve lost a number of friends as a result of me being too sick to go out. Where people might see me as being lazy or anti-social, I am actually struggling to function on a basic day-to-day level, and trying to face the added symptoms and stresses that come from being up past my ideal 8.30pm bedtime.
So without harping on about all my symptoms and struggles, I just want to help spread some awareness around ME/CFS and hopefully get people to stop thinking of it as just being tired or lazy. May is awareness month. So this is my bit to help spread awareness and understanding about a disorder even the medical community are still grappling with.
I’ve recently been diagnosed with Myalgic Encephalomelitis (or as it’s more commonly known, Chronic Fatigue Syndrome). Since the diagnosis I’ve faced a range of reactions from people. The most common response I’ve had is “Oh I reckon that’s what I have. I get really tired”. Whilst I don’t doubt that these people do get tired, it is disheartening to realise that so little is known about the syndrome that the general public just thinks it’s a matter of simply being tired. Considering the name of the syndrome, this is not surprising.
ME/CFS is in fact a multi-system disorder. In order to get a diagnosis, the patient needs to show a range of symptoms across the immune system, endocrine system, nervous system, digestive system, reproduction system and cardiovascular system. These symptoms vary from patient to patient with varying levels of severity. I personally exhibit around 25 symptoms, with most effecting me on a daily basis. And I’m one of the lucky ones with what would be considered a somewhat mild case. There are people with it who end up housebound or even bedbound from it. So despite the seemingly simple name, it is in fact, quite debilitating.
Over the 10 years of me having this disorder, I’ve lost a number of friends as a result of me being too sick to go out. Where people might see me as being lazy or anti-social, I am actually struggling to function on a basic day-to-day level, and trying to face the added symptoms and stresses that come from being up past my ideal 8.30pm bedtime.
So without harping on about all my symptoms and struggles, I just want to help spread some awareness around ME/CFS and hopefully get people to stop thinking of it as just being tired or lazy. May is awareness month. So this is my bit to help spread awareness and understanding about a disorder even the medical community are still grappling with.
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