1. Sign our petition calling on Cochrane to withdraw their review of Exercise Therapy for CFS here.
    Dismiss Notice
  2. Guest, the 'News in Brief' for the week beginning 8th April 2024 is here.
    Dismiss Notice
  3. Welcome! To read the Core Purpose and Values of our forum, click here.
    Dismiss Notice

Opinions requested: strugglecare

Discussion in 'Relationships and coping' started by Nixxy, Jan 17, 2021.

Tags:
  1. Nixxy

    Nixxy Established Member

    Messages:
    24
    Location:
    Belgium
    Soo I wasn’t quite sure where to post this, but I figured here was the most appropriate?

    https://www.strugglecare.com/

    this website was advised to me to use. What do you think about it? I’m not sure how I feel about it.
     
    Nixxy, Jan 17, 2021
    #1
    Kitty likes this.
  2. Trish

    Trish Moderator Staff Member

    Messages:
    52,240
    Location:
    UK
    It seems to be someone's website selling books with catchy titles of the 'teach yourself not to feel guilt, shame, etc' variety. And some links to therapists' websites.

    There are thousands of books written every year telling us how to live our lives to be happier, richer, more fulfilled etc. I have read a few over the decades. Most are either common sense, or a pile of appealing seeming platitudes and anecdotes. A few gave me interesting insights, some were mildly interesting, most were patronising or forgettable, some left me feeling temporarily even more inadequate.

    I wonder why someone would advise to use the website. I think I would ask them why they advised it, and in what way it had helped them, and why they thought it was relevant to you - and whether they have a financial interest in it.
     
    Trish, Jan 17, 2021
    #2
    vsou, Louie41, wingate and 9 others like this.
  3. Kitty

    Kitty Senior Member (Voting Rights)

    Messages:
    5,354
    Location:
    UK
    The person suggesting it might be trying to be helpful, but appears to have little idea about ME. If it were me, I wouldn't waste any more energy on it.

    If it's someone important, you could perhaps respond with information about the reality of living with ME? I've found some of the stuff written by people struggling with Long Covid quite useful, in that it describes almost identical symptoms and challenges, but doesn't contain references to all the politics that ME has become burdened by. Family members, friends, and colleagues need to understand how hard it is to live with, but usually don't need to know the backstory in detail.
     
    Kitty, Jan 17, 2021
    #3
    Louie41, MEMarge, Binkie4 and 3 others like this.
  4. JemPD

    JemPD Senior Member (Voting Rights)

    Messages:
    3,951
    The link in your post takes us to the 'resources' section of the site - i navigated to the home page where the site purpose & what it's all about is better described. I looked briefly at one of the video clips... i think it's probably quite good for some people, especially non neuro-typical people who struggle with self care tasks.

    So it depends on the context in which the recommendation was made, & the reason for it. I think it's pretty irrelevant to ME *alone*, because the reasons for struggling are ones of energy rather than anything else, but if one is also autistic or profoundly depressed for example, it could be helpful

    FWIW i love Brene Brown's books
     
    JemPD, Jan 17, 2021
    #4
    Hutan, MEMarge, Nixxy and 2 others like this.
  5. Trish

    Trish Moderator Staff Member

    Messages:
    52,240
    Location:
    UK
    Thanks, @JemPD for pointing out the home page. So I modify my previous comment. There seems to be a specific purpose of helping people who are struggling to care for themselves of others, such as a child. I haven't looked at the videos, but can see from the titles that they may have useful practical tips.
     
    Trish, Jan 17, 2021
    #5
    MEMarge, Graham and Kitty like this.
  6. Wonko

    Wonko Senior Member (Voting Rights)

    Messages:
    6,682
    Location:
    UK
    Only read one 'article' but the colour scheme, layout, etc. used makes it unlikely I will read more.

    The site is hard work, with what I have read so far being so shallow as to not make it worth it.

    Might be worthwhile for carers or family to read, to gain a slight appreciation of some of the issues, but for anyone else, who is experiencing problems......doubt it's worth it.
     
    Wonko, Jan 17, 2021
    #6
    Trish, JemPD and Kitty like this.
  7. Nixxy

    Nixxy Established Member

    Messages:
    24
    Location:
    Belgium
    the context is a parenting group who wanted to help out because I said I’m losing motivation to do stuff because I always run into my body being to ill to keep the house at a certain level of clean.
     
    Nixxy, Jan 17, 2021
    #7
    Hutan, JemPD, Trish and 1 other person like this.
  8. Trish

    Trish Moderator Staff Member

    Messages:
    52,240
    Location:
    UK
    Ah, OK that makes sense. In practical terms, I am finding a robot vacuum cleaner helpful. As a parent with ME, accept all the help you can get, including, if you can afford it, employing a cleaner. Good luck.
     
    Trish, Jan 17, 2021
    #8
    Wits_End, Hutan and JemPD like this.
  9. Hutan

    Hutan Moderator Staff Member

    Messages:
    26,857
    Location:
    Aotearoa New Zealand
    Not wanting to take the thread off topic, but me too - they are quite expensive, but mine was my best purchase of 2020. It does a couple of runs a week and has been the answer to the drifts of dog hair that used to accumulate in some corners and under furniture. I still get a disproportionate satisfaction in seeing the rugs and floor boards looking freshly vacuumed, with the only effort from me having been the emptying of the dust collection container.
     
    Hutan, Jan 17, 2021
    #9
    Trish likes this.
  10. Wonko

    Wonko Senior Member (Voting Rights)

    Messages:
    6,682
    Location:
    UK
    The sooner they invent a robot to do that the better.
     
    Wonko, Jan 17, 2021
    #10
    Hutan, shak8 and Trish like this.
  11. shak8

    shak8 Senior Member (Voting Rights)

    Messages:
    2,219
    Location:
    California
    There are therapists listed in my locale via the site. Not very many. So this endeavor is in its early stages, I think.

    Therapists pay to be listed here and on psychology.com site.

    I think this is primarily a marketing tool (hence the .com address). Same info easily gathered by internet search.
     
    shak8, Jan 17, 2021
    #11
    Hutan, Trish and Wonko like this.

Share This Page