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Fibromyalgia

Jenny62Jenny62 Posts: 14Member Connected
edited April 2018 in Invisible impairments
Just joined. I am in Gloucester SW UK

Replies

  • Lasian_ScopeLasian_Scope Posts: 660Member Pioneering
    Welcome to the community, @Jenny62!

    Would you like to tell us a bit more about yourself?
  • Jenny62Jenny62 Posts: 14Member Connected
    I have a disability one that is not visable. Fibromyalgia. I enjoy creative hobbies that keep me sane. Due to my condition, and no car, it is difficult for me to plan outings. Spend a lot of time solo. I would like meet up if there are any arts and crafts social events locally.
    Kind regards
  • Lasian_ScopeLasian_Scope Posts: 660Member Pioneering
    edited April 2018
    Hi @Jenny62

    I can empathise with finding it hard to plan outings when you don't have a car - it's hard to enjoy even local things when you've already used up your available energy for travelling! 

    Meetup might be a good website to find social events locally. Otherwise, I hope we can be a good alternative source of support and interesting chats for you.

    You might be interested in the discussion that the lovely @JennysDad has set up for members to post about arts and crafts. 

    Please do let us know if you have any questions  :)
  • JennysDadJennysDad Posts: 2,308Member Pioneering
    Hello @Jenny62 and a very warm welcome to you.
    Issues like personal protection, and the fact that we cover most of the nation, make it difficult to organize meet ups and social activities from this end. If I lived in Gloucester, for example, I might invite you to a social gathering that did not actually exist, in order to have my wicked way with you. And because the Scope community covers all disabilities and across the nation, organizing relevant support groups, administering and staffing them would be a tremendous task. Not that we don't want to do it, believe me! Are you familiar with Fibromyalgia UK? This is a link to their support groups page: http://www.fmauk.org/contactsmenu/supportgroups and it looks promising.
    And as Lasian said we now have the KaleidoScope Gallery, a place for members to post their own creative endeavours for others to share. It has not been around long, but I am hoping it will become better known. And you can also chat, there, about your own interests, techniques and so on. Kaleidoscope is here 
    I really hope something in this is of use to you and that we may get to know you better,
    Warmest best wishes,
    Richard
  • Sam_ScopeSam_Scope Posts: 7,732Administrator Scope community team
    Hi @Jenny62

    Welcome to the community :)
    Scope
    Senior online community officer
  • Jenny62Jenny62 Posts: 14Member Connected
    Totally understand regards group meetings. I will browse through the links.
    Kind regards
    Jenny62
  • JennysDadJennysDad Posts: 2,308Member Pioneering
    Hi @Jenny62
    I noticed yesterday that the Fibromyalgia UK site was presenting problems - it appears they've failed to update the program which checks that new posts are not from 'robots'. Have to trust they will get it back into operation soon.
    Very best to you,
    Richard
  • Jenny62Jenny62 Posts: 14Member Connected
    Hi Richard thanks for suggestions.  I am already registered with multi Fibromyalgia sites. I am at stage where I just accept and witb Dr's help living with it. These sites can be depressing as dwelling on the symptoms themselves.  Find it is better to mix with those from all walks of life. Kind regards
  • JennysDadJennysDad Posts: 2,308Member Pioneering
    Hi Jenny, @Jenny62. <3 
    Still here and listening.
    Warmest best wishes,
    Richard
  • Jenny62Jenny62 Posts: 14Member Connected
    Hi Richard, How old is your daughter Jenny, guess it is her in your photo 
    Regards
    Jenny
  • JennysDadJennysDad Posts: 2,308Member Pioneering
    Hi Jenny, @Jenny62. Good to hear from you.
    Jenny - my life, my love and inspiration - would have been 31 last August, but passed away 27 years ago at the age of four and a half. Her brother, I'm happy to say, is himself now 27 and is a continuing source of pride and joy.
    I was privileged to be the primary carer for both my children.
    Jenny was born with massive disabilities which only began to reveal themselves at the end of the first traumatic week of her life, and it is my experience of her and of our life together that has brought me here. For that I am very thankful.
    And before you apologize :smile: for inadvertently reminding me of my loss, believe me it does not matter. It is not something I have any difficulty referring to.
    With affection,
    Richard
  • Jenny62Jenny62 Posts: 14Member Connected
    Hi Richard, Life is a gift.  Jenny made an unforgetable impact on your life,  as our children do for different reasons. I raised my three children on my own. Two in their 30's whose dad took his own life through drugs. My third whose dad and I had relationship issues now 26. 
    My children have been my life now they have theirs. Haha
    It helps to talk. 
    Thank you
    Jenny
  • JennysDadJennysDad Posts: 2,308Member Pioneering
    Lovely to talk to you too, Jenny. @Jenny62 ; Any time.
    Richard
  • charlenecharlene Posts: 555Member Pioneering
    HiJenny,  I have fibromyalgia too. Prefer to be on multiple disability site as I don't like dwelling on my problems.  This is a very friendly site.
    When the going gets tough, the tough get going.
  • Jenny62Jenny62 Posts: 14Member Connected
    Hi Charlene, Seems to be more folk have Fibromyalgia, the title itself umbrellas so many symptoms. Find treating worst ones helps. Worst is never knowing what to expect day by day so rarely commite to any events. I wish you well. Regards
  • debbiedo49debbiedo49 Posts: 2,891Member Disability Gamechanger
    Welcome
    💜🏴󠁧󠁢󠁳󠁣󠁴󠁿
    I am a fibro warrior !💜♏️
  • Jenny62Jenny62 Posts: 14Member Connected
    Thank you debbiedo49
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