1. Guest, the 'News in Brief' for the week beginning 7th September 2020 is here.
    Dismiss Notice
  2. Welcome! To read the Core Purpose and Values of our forum, click here.
    Dismiss Notice

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

Discussion in 'General ME/CFS News' started by ladycatlover, Jan 28, 2020.

  1. ladycatlover

    ladycatlover Moderator Staff Member

    Messages:
    2,937
    Likes Received:
    15,139
    Location:
    Liverpool, UK
    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.

    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]
     
    Mij, shak8, Frankie and 9 others like this.
  2. Trish

    Trish Moderator Staff Member

    Messages:
    25,690
    Likes Received:
    126,022
    Location:
    UK
    Dreadful article. The author seems to have no idea what CFS is. She is describing chronic tiredness.
     
    shak8, Dechi, MEMarge and 12 others like this.
  3. Diluted-biscuit

    Diluted-biscuit Senior Member (Voting Rights)

    Messages:
    469
    Likes Received:
    2,839
    What a surprising article from the guardian!

    *looks round for that sarcasm emoji*
     
    ScottTriGuy, ukxmrv, Michelle and 8 others like this.
  4. chrisb

    chrisb Senior Member (Voting Rights)

    Messages:
    2,825
    Likes Received:
    19,185
    The side link to "Five ways to stop feeling tired all the time" may have been a clue. A tatty article.
     
  5. Esther12

    Esther12 Senior Member (Voting Rights)

    Messages:
    3,686
    Likes Received:
    30,218
    I don't think that it would be a good idea to make a complaint about something like this. The Guardian has done so much worse!
     
  6. alktipping

    alktipping Senior Member (Voting Rights)

    Messages:
    559
    Likes Received:
    2,879
    existential dread is that something suffered by navel gazing idiots with to much idle time on their hands . it has never been important we exist simply by chance there are no hidden and deep reasons for our existence . imho .
     
  7. Simone

    Simone Senior Member (Voting Rights)

    Messages:
    341
    Likes Received:
    3,347
    Location:
    Australia
    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.
     
    Joh, Michelle, Sarah94 and 11 others like this.
  8. ScottTriGuy

    ScottTriGuy Senior Member (Voting Rights)

    Messages:
    652
    Likes Received:
    5,836
    Location:
    Toronto
    Are you (or someone) able to reach out to the patient / author privately to educate her?

    ETA: @Simone
     
  9. Snow Leopard

    Snow Leopard Senior Member (Voting Rights)

    Messages:
    2,084
    Likes Received:
    13,324
    Location:
    Australia
    C'mon, the photo is the best part of the article! :emoji_cat2:
     
    shak8, alktipping, Trish and 2 others like this.
  10. strategist

    strategist Senior Member (Voting Rights)

    Messages:
    2,990
    Likes Received:
    29,613
    This is a nontrivial health problem even if it's not chronic fatigue syndrome.
     
    Sarah94, ladycatlover and alktipping like this.
  11. Simone

    Simone Senior Member (Voting Rights)

    Messages:
    341
    Likes Received:
    3,347
    Location:
    Australia
    There is at least one person looking at doing this. We think it would be better coming from one person than a deluge, which would feel like an attack, which would be unhelpful and pretty traumatic.
     
  12. Dechi

    Dechi Senior Member (Voting Rights)

    Messages:
    551
    Likes Received:
    2,789
    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...
     
    alktipping, shak8, Sarah94 and 6 others like this.
  13. rvallee

    rvallee Senior Member (Voting Rights)

    Messages:
    4,611
    Likes Received:
    35,956
    Location:
    Canada
    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.
     
    alktipping, shak8, JemPD and 4 others like this.
  14. ScottTriGuy

    ScottTriGuy Senior Member (Voting Rights)

    Messages:
    652
    Likes Received:
    5,836
    Location:
    Toronto
    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.
     
    alktipping, Rosie, Dechi and 2 others like this.
  15. rvallee

    rvallee Senior Member (Voting Rights)

    Messages:
    4,611
    Likes Received:
    35,956
    Location:
    Canada
    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.
     
  16. Dechi

    Dechi Senior Member (Voting Rights)

    Messages:
    551
    Likes Received:
    2,789
    @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.
     
  17. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

    Messages:
    6,865
    Likes Received:
    40,273
    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.
     
    Mij, alktipping, JemPD and 8 others like this.
  18. Dechi

    Dechi Senior Member (Voting Rights)

    Messages:
    551
    Likes Received:
    2,789
    That’s exactly how I feel. Even though I know I am very ill, my brain keeps telling me I’m not. I haven’t found a way so far to not keep trying to push my way through it. That’s how we are wired to survive, so it’s probably impossible to turn off.
     
    alktipping, rainy, Mithriel and 6 others like this.
  19. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    Messages:
    5,097
    Likes Received:
    42,270
    Location:
    UK
  20. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

    Messages:
    6,865
    Likes Received:
    40,273
    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.
     
    Snow Leopard, Mij, Dechi and 10 others like this.

Share This Page