"The way of the tired person":life rules for the perpetually exhausted. Jo Walker, Jan 27 2020, The Guardian

ladycatlover

ladycatlover

Senior Member (Voting Rights)
Australian lifestyle

https://www.theguardian.com/lifeand...rson-life-rules-for-the-perpetually-exhausted

Sometimes weariness is inevitable, but as one chronic fatigue sufferer has learned, when you can’t hit snooze on life there are ways of getting through it.

I’ve lived with chronic fatigue syndrome for a decade now, which means I’m practically a Professional Tired Person. I work tired. I travel tired. I go on dates tired. I mop the bathroom tired. Medical science still hasn’t worked out why this is (there are several boring competing theories), but I know I’m not alone. You don’t have to have a chronic illness to feel crappy in this modern life. Work, kids, existential dread – they all take energy. Which is why it pays to have some strategies for living a functional life when all you want to do is nap.
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Topped by a fetching photo of an exhausted kitten! :rolleyes:

Only put here to allow any Australian Members to make complaints if they feel up to it. Perhaps you could outsource complaining? ;) [sarcasm]
 
ladycatlover said:
Only put here to allow any Australian Members to make complaints if they feel up to it. Perhaps you could outsource complaining? ;) [sarcasm]
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We’ve seen it, and it really is awful. I’ve decided against writing a complaint about this, misguided though it is, because it’s written by someone living with the condition (or a condition). It’s really sad to see patients undermining themselves like this, but I think that’s really different to a journalist having done poor research. She’s writing using her language and understanding. The best we can do is continue to try to educate the patient community.
 
Before falling ill, I was chronically tired from the day I gave birth to my first child. I lived my life dragging my body around for 20 years. I was tired, but I had passions and joy in my life. And I was often happy.

Now I mostly feel miserable and suffering is my life companion. Oh how I miss those tired day...
 
Dechi said:
Before falling ill, I was chronically tired from the day I gave birth to my first child. I lived my life dragging my body around for 20 years. I was tired, but I had passions and joy in my life. And I was often happy.

Now I mostly feel miserable and suffering is my life companion. Oh how I miss those tired day...
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Oh yeah I had chronic fatigue for at least a decade before I got ME. Always tired. Never stopped. My GP didn't care much, did a blood panel and never asked any follow-ups, which I didn't bother because clearly he didn't care.

Zero comparison. It's insulting, actually. Like comparing the occasional easily-treated typical headache with daily crippling migraines.
 
Dechi said:
Before falling ill, I was chronically tired from the day I gave birth to my first child
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rvallee said:
I had chronic fatigue for at least a decade before I got ME.
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I've talked to some folks that, in retrospect, attribute their pre-ME experience of chronic fatigue / tiredness for years as early / mild ME.

But it doesn't sound like you @Dechi and @rvallee don't put your experiences under the ME rubric.
 
ScottTriGuy said:
I've talked to some folks that, in retrospect, attribute their pre-ME experience of chronic fatigue / tiredness for years as early / mild ME.

But it doesn't sound like you @Dechi and @rvallee don't put your experiences under the ME rubric.
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It was never disabling, so it's hard to tell. It did slowly get worse over many years so it could all be the same thing. But the difference is huge. Then again sometimes you get a mild flu that you can push through and other times you are essentially comatose for days. It's still the same thing even though it can have very different severity, up to and including death.

It was also pretty similar to normal tiredness, just all the time. Completely unlike the heavy dead feeling of ME exhaustion. Maybe also the same thing on a spectrum, but impossible to tell without reliable evidence.

No doubt with standard competent medical care we would know way more by now about whether they are related. Instead, my medical file likely got shredded after my GP since birth basically kicked me off and refused other appointments unless it's about unrelated things. Two ways of doing things, I guess.
 
ScottTriGuy said:
I've talked to some folks that, in retrospect, attribute their pre-ME experience of chronic fatigue / tiredness for years as early / mild ME.
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@ScottTriGuy in my case it was not pre-ME. Just life with kids, not sleeping a lot, a toxic relation and a very stressful and demanding job with extra long hours.

Even tired, I was doing weight lifting and training many hours a week up until I had ME. My body was responding very well to training until the first viral infection that triggered ME. I knew something was wrong when my thigh muscles started having lactic acid when climbing stairs and I couldn’t achieve my normal speeds when bike training.

This never went away, it kept increasing and today this muscle weakness has taken over my whole body. Some days I can’t even carry my handbag. Sometimes even lifting a fork is a challenge. Sorry I am digressing but even after 7 years it still feels surreal.
 
Dechi said:
Sorry I am digressing but even after 7 years it still feels surreal.
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It does. It feels very surreal, even decades in. Let alone when it first starts happening to you.

This is what's so dangerous about the article in the OP, however well it was intended. It's also a fundamental flaw in the BPS argument. From the start most of us just find it so surreal we do assume our perception must be off. That something relatively trivial can cost so much in terms of effort and recovery and so many of us automatically try to push through. It just doesn't work.
 
Sly Saint said:
interesting discussion on another forum
https://www.mumsnet.com/Talk/am_i_b...elp-me-understand-friend-with-chronic-fatigue
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It is. Some very understanding comments.

I find it interesting in that I was friendly at one time with a person with mild ME (she would class herself differently). She was financially secure and pensioned off work. She could afford to run a car, was well enough to drive and went out nearly every day. She used to go to various classes that lasted 3 or 4 hours, driving herself there and back.

A group of us used to go on long weekends away at special venues. Some of the people there were much, much more unwell and trying to survive on ESA or just DLA. Most of us just wanted a break, but she constantly wanted to talk about "this illness". She moaned more than everyone else put together.

Snag was she was out and about more that the rest of us put together too. It often used to cross my mind that she must give people a wholly misleading picture of what living with ME was like.

Please understand I'm not saying she wasn't sick. She just had no concept of how relatively lucky she was and liked to moan about her life. A lot.
 
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