Remaining politically neutral during General Election 2024


Under guidance from the Electoral Commission and Charity Commission, it's important that Scope remains politically neutral during General Elections.

While we understand that this period will see many passionate discussions and do not want to discourage open discussion, we cannot allow discussions which are purely intended to influence voting.

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fibromalagia

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greyhazy
greyhazy Community member Posts: 5 Listener
interested to talk to other people about his condition, thank you

Comments

  • Ross_Alumni
    Ross_Alumni Scope alumni Posts: 7,650 Disability Gamechanger
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    Hello @greyhazy

    I hope you are well, is there anything in particular that you want to speak about relating to the condition?
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  • L_Volunteer
    L_Volunteer Community Volunteer Adviser, Scope Member Posts: 7,981 Disability Gamechanger
    edited October 2021
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    Hi @greyhazy

    I also have fibromyalgia. Is there anything specific you want to know?  :)
    Community Volunteer Adviser with professional knowledge of education, special educational needs and disabilities and EHCP's. Pronouns: She/her. 

    Please note: if I use the online community outside of its hours of administration, I am doing so in a personal capacity only.
  • greyhazy
    greyhazy Community member Posts: 5 Listener
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    hello, thank you for your reply , i just would like to talk to other people that have it, as i feel a bit lost around other people that don't. i know there are so many different symptoms, i didn't really ever get a proper diagnosis, as my neurologist did not see me again since Covid and lock down. i could not got  through with the tests. (electrodes).
    so now waiting for ovarian op. 
    my life has slowed right down and i have to go at my own pace, it took lot of courage and to speak out to my closet friends and family as people did not understand.
    I have not worked for 2 years and on ESA, was lucky to have a good doc at the assessment although i never got the report.
    i look after my self best i can , just interested how other people manage?. i do have nerve pain, but try and use herbs instead which seem ok, but not always so i do take medication, but not together.
     just sleep , rest and mild exercise helps, but i struggle walking up hills, i use to walk a lot back in the day, the adjustment to your life is so difficult and the acceptance that i don't think i will ever get better, just good days and bad. thanks
    its a very difficult illness to explain to other people, i have read up a lot about it and don't think its ME
    I would like some recommendations of books to read please.
  • L_Volunteer
    L_Volunteer Community Volunteer Adviser, Scope Member Posts: 7,981 Disability Gamechanger
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    Hi @greyhazy

    Thanks for your response. Life certainly does change following the onset of fibromyalgia. However, it is crucial that you find what works for you. Unfortunately, fibromyalgia is a hidden condition so many people who have not experienced it struggle to understand. 

    In terms of talking to other people with fibromyalgia, there are a few of us on the Scope forum with fibromyalgia so I am sure you can talk to multiple people with fibromyalgia. You may particularly benefit from the disabled people forum which you can find at https://forum.scope.org.uk/categories/disabled-people, the ESA forum which you can find at https://forum.scope.org.uk/categories/benefits-and-finances, the dealing with chronic pain forum which you can find at https://forum.scope.org.uk/categories/chronicpain and the invisible impairments forum which you can find at https://forum.scope.org.uk/categories/invisible-impairments

    I personally manage fibromyalgia by resting, using a laptop instead of extensive handwriting and having warm showers and baths since the heat helps me. However, this is not extensive and may not be applicable to you. For example, I know others with fibromyalgia who find cold works better for them. 

    Some book recommendations include:
    • Fibromyalgia and myofascial pain syndrome: A practical guide to getting on with your life (Dr Chris Jenner)
    • Fibromyalgia: A guide to understanding my journey (Shelly Bolton)
    • But you don't look sick!: Fibromyalgia an invisible illness (Bette Brown)
    I hope you enjoy these books and that this post has helped you in some way! I will look forward to hearing from you again soon  :)
    Community Volunteer Adviser with professional knowledge of education, special educational needs and disabilities and EHCP's. Pronouns: She/her. 

    Please note: if I use the online community outside of its hours of administration, I am doing so in a personal capacity only.
  • greyhazy
    greyhazy Community member Posts: 5 Listener
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    thank you so much for your help, lots to read which i am grateful for. 
    yes a hidden illness, is so difficult, i got so fed up when people would say, "so what's wrong then"?
    it would be so much easier if i had a broken arm.
    not that i want one of course. being social is so very hard, my whole life has changed, it does feel like a lonesome journey .its tricky,
    I am grateful for the few friends and family i do have, .
    thank you for your advice. yes hot and cold is like that to, as i am going into menopause i fluctuate a lot,  and swelling and pain if i walk or stand for too long, or even car journeys.  that's when the nerve pain kicks in. must go now.
    thank you again.



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