Hi I'm Nicola — Scope | Disability forum
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Hi I'm Nicola

NikkiJane94
NikkiJane94 Member Posts: 1 Listener
in Start here and say hello!
I was diagnosed with fibromyalgia last year in February. It was "brought on" after having a traumatic labour and delivery of my son Elliott. Whom we lost in September last year from a rare genetic disorder. Also Suffer with depression and social anxiety. Would like to chat with others who have similar issues or anyone who wants to chat about anything really. TTFN !
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  • Ami2301
    Ami2301 Member, Community Co-Production Group Posts: 7,945 Disability Gamechanger
    Hi @NikkiJane94 and welcome to the community! I'm so sorry for the loss of your son. There are many community members who have Fibromyalgia and I'm sure they will be happy to share their experience with you. Please let us know if you need anything :)
    Disability Gamechanger - 2019
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  • chiarieds
    chiarieds Member, Community Co-Production Group Posts: 12,477 Disability Gamechanger
    Hi @NikkiJane94 How old was little Elliott when you lost him? I'm guessing just a few months old. No parent should ever experience such a loss. I would be pleased to chat with you anytime, but feel those understanding Fibromyalgia, depression, etc. may better help you.
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  • Connie00
    Connie00 Member Posts: 252 Pioneering

    Hello @NikkiJane94

    My Name is Connie00

    I am one off the community Champion’s here at Scope.  it’s really nice to meet you.

    A very warm welcome to the Community.

    Thank you for reaching out to us, I am very sorry to hear about the loss of your baby son Elliott no parent should have to go through that, have you got close family that are supporting you? I really do understand what you are going through. my darling its very early days yet, let yourself grieve.

    I myself am a Fibromyalgia sufferer again mine was brought on by shock it was the loss of my new born granddaughter, we called her Angel.  in the same year we had four deaths all very close family Members, I can remember thinking, watching my daughter go through what she went through and watching my Granddaughter peacefully pass away in her arms four hours later, I was distraught, I wanted to go in her place. anything to stop my daughters hurt. I also have other underlying problems all from that very traumatic year 2008 I always say we survived that we will survive anything, 

    every year on the day she was born and taken we as a united family both sets of grandparents along with my daughter and son-in-law and their other two children  my daughter already had one child but went on to have another two years later after the loss of Angel anyway we all vowed we would celebrate that day every year, we wouldn't mourn it we would go to a theme park or to the beach for the day.have fun but we would remember her happily wonder what she would be like. we would let balloons off for her then all have a family meal, because this is what we do for every other member of the family. it keeps her memory alive. 

    The first three years were the worst for me, I was very upset very angry as well as coping with the Fibromyalgia. but there are Fibromyalgia support groups on line please take a look at these links I hope they help. and I am truly sorry for your loss

    https://community.scope.org.uk/categories/chronicpain

    https://www.nhs.uk/conditions/fibromyalgia/

    https://www.mencap.org.uk/advice-and-support/dealing-bereavement

    https://www.childbereavementuk.org/grieving-for-a-child-of-any-age

    I will always be around if you need me


    We are always here to lend support, help, and advise where we can,

    If we can be of any assistance to you please don’t hesitate to contact us

     

     

     

    @connie00   :) 


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  • chiarieds
    chiarieds Member, Community Co-Production Group Posts: 12,477 Disability Gamechanger
    Hi @NikkiJane94 - How are you? Perhaps I should have said more in light of reading Connie's post about losing her beautifully named granddaughter.
    We lost our youngest daughter, aged 23 months, the night we brought her home from Gt. Ormond Street over 30 years ago. Our family has a genetic disorder, which it's now thought she must also have had. She had severe breathing problems from birth, & had a tracheotomy at one week old.
    Life after that was never the same; it took a different path to that I'd imagined. Our little one is always in my heart, as I'm sure Elliott is in yours. As I've said to my eldest daughter, as long as we both live, she too will be there.....my eldest daughter imagines her sister being in her thirties; to me she's still 'our little one.'
    Our eldest daughter never falls out with anyone; always gives them the benefit of doubt....shows great empathy to others, as she feels life is sometimes way too short, because of her little sister.
    Just to let you know I do understand a part of the problems you're facing..... I celebrate our youngest daughter's birthday, & do that for those of my parents; I try to forget the dates I lost them. It must be so hard for Connie to have that date the same.....but what a wonderful way to celebrate her little granddaughter.
    Sending the most gentle of hugs to you, x
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  • Ails
    Ails Member Posts: 2,256 Disability Gamechanger
    Hi @NikkiJane94 and welcome to the Community.  It is nice to meet you and thank you for sharing with us.  I am so sorry to hear about the loss of your little boy.  That is tragic and I can't begin to imagine what you and your family went through.  You will receive lots of support on the Community, as you have found so far.  We all look out for each other and give one another so much friendship so please feel free to chat to us anytime.  There will always be someone on here to chat to.  You will meet many new friends on this great Community too and I hope you enjoy your time with us.  I look forward to seeing you on here.  If there is anything we can help/support you with then please just let us know.  All the best.  :smile:
    Winner of the Scope New Volunteer Award 2019.   :)
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  • Adrian_Scope
    Adrian_Scope Posts: 8,576 Scope online community team
    Hello @NikkiJane94 and thank you for finding us. I am incredibly sorry to hear about your son and I can only imagine the pain you've endured as a result. You're very welcome here and I hope this community becomes a source of support to you as it has to so many others.
    If there's anything you need, or anything we can do, please don't hesitate to ask.
    Community Manager
    Scope

    Tell us how to make the community better for you. Complete our feedback form.
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  • Connie00
    Connie00 Member Posts: 252 Pioneering
    Hello @Chairieds
    Thank you so much for sharing your story, that has come from the heart and how very brave to tell it with such compassion, it's not always about you didnt think you could help because you didn't have Fibromyalgia.  you brought to the table compassion understanding knowledge, and the fact you can talk openly about your loss. that's the wonder of this forum, being able to share,  

    thank you Connie00
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