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fibrobutterfly
fibrobutterfly Community member Posts: 7 Listener
Hi,
wanted to introduce myself, i live in Lancashire , I have a lovely supportive family and husband and it looks like im finally getting the diagnosis/treatment I should be getting after ten years of frustration and trauma.

I have fibromyalgia, cfs, me, epilepsy, arthritis, migraines and scoliosis . Ptsd and probably a few others still investigating 🙄🤷🏻‍♀️.
 
I did 4 years in the army reserves, 5 years working with looked after children and 30 years in finance, but can no longer work due to symptoms etc

i have an amazing grandson, who used to do bmx racing and now does scooter tricks😱🤦‍♀️

I feel in a more positive place as I am now being referred for specialists that actually believe me and understand my conditions👏.  

I have just asked for a pip application and thought it best to research some of the best sites for help and support with this and scope we’re coming up as really helpful, not just for pip, but support in general.  So here I am, I hope everyone is ok and look forward to joining this community 🥰🦋🙏

Comments

  • woodbine
    woodbine Community member Posts: 11,609 Disability Gamechanger
    2024 The year of the general election...the time for change is coming 💡

  • fibrobutterfly
    fibrobutterfly Community member Posts: 7 Listener
    Thank you, that’s really helpful, much appreciated 🙏
  • Hannah_Alumni
    Hannah_Alumni Scope alumni Posts: 7,912 Disability Gamechanger
    Hello @fibrobutterfly

    Welcome to the community! :) I hope you are well? 

    I love the Tigger profile picture <3 Are you a Disney fan?
    Hannah - She / Her

    Online Community Coordinator @ Scope

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  • chiarieds
    chiarieds Community member Posts: 16,098 Disability Gamechanger
    edited August 2023
    Hi @fibrobutterfly - & welcome to the community. As far as PIP goes, it's not about any diagnosis, but rather how your disability affects certain activities of daily living &/mobility the majority of the time.
    With your claim form give a couple of recent, detailed examples as to the difficulty you face for each applicable descriptor, i.e. when did it happen, where, what happened, did anyone see this, & were there any consequences to attempting/doing an activity?
    Say if you can do each applicable activity 'reliably,' i.e. safely, to an acceptable standard, repeat as often as one would reasonably expect, or if it takes you much longer than someone without a disability. See this mentioned in the link below, which is also well worth looking through.
    Just complete a few questions at a time, & you can always add extra pages at the end ensuring you put your name & National Insurance number on each page. You can also ring the PIP enquiry line on 0800 121 4433 to ask for extra time to complete the form, & you will be given another 2 weeks without question. Keep a copy of everything 'just in case,' & get a free Certificate of Posting from your Post Office when sending the form off.

    https://www.gov.uk/government/publications/personal-independence-payment-assessment-guide-for-assessment-providers/pip-assessment-guide-part-2-the-assessment-criteria


  • fibrobutterfly
    fibrobutterfly Community member Posts: 7 Listener
    Thank you very much, your are very kind 🙏
  • fibrobutterfly
    fibrobutterfly Community member Posts: 7 Listener
    Hannah
    i love Disney, I think I have scarred my children and grandson for life with Disney 😱. My son was even in an amateur ‘wizard of oz at the theatre recently and he was so good as the chief winkie!

    my friend called me tigger many years ago when I was organising charity events as she said I just bounce around, sorting everything. I’ve sort of lost a bit a bit of bounce and brain fog/ memory means I’m not so good at organising, but I like to think tigger is still there, resting with the occasional bounce!😁🐯
  • Hannah_Alumni
    Hannah_Alumni Scope alumni Posts: 7,912 Disability Gamechanger
    I love Disney too! <3 

    Aww I bet that was lovely to watch! Love the Wizard of Oz too! Well you know the wonderful thing about Tigger's? 
    They're bouncy, trouncy, flouncy, pouncy
    Fun, fun, fun, fun, fun!
    I have a stoma and I ended up calling him Stitch because like the Disney character he's a little unpredictable and does what he wants, but he's still good :) 
    Hannah - She / Her

    Online Community Coordinator @ Scope

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  • L_Volunteer
    L_Volunteer Community Volunteer Adviser, Scope Member Posts: 7,978 Disability Gamechanger
    Is there something, in particular, that might help at the moment @fibrobutterfly? P.S. I also love Disney and have fibro and chronic fatigue! Nice to meet you  <3
    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.
  • fibrobutterfly
    fibrobutterfly Community member Posts: 7 Listener
    Aww, thank you, I’m waiting for the pip form to come through at the moment, so once I have that, I will fill it in with my hubbys help and then may need to run ot by you if that’s ok?

    my other half has been amazing, but I think it’s taking it’s toll on him. He looks like he’s starting to go down the depression route, I can see some of the signs, similar to me and I ended up with PTSD. I think the worry of what we have had to go through to get this far has affected him too. 
    I’ve had cbt and it helped me a lot. I’ve tried to talk to him, but he says he’ll be fine, he just needs some time?
    he’s worrying about me and I’m now worried about him🙄
    is there a forum for family members that he can go to and I won’t access it? Maybe that will help?
  • fibrobutterfly
    fibrobutterfly Community member Posts: 7 Listener
    Thank you so much for your help and support and I hope you are having a good day today 🙏🦋🥰
  • Jimm_Scope
    Jimm_Scope Posts: 2,705 Scope online community team
    edited August 2023
    I hope you're having a great day @fibrobutterfly! Can I just say I love the profile picture, my dad would love it. He's a huge tigger fan, has a bunch of tigger plushie toys.

    edit: I just scrolled up and saw @Hannah_Scope and half the community got the picture compliment in  first  :|
    They/Them, however they are no wrong pronouns with me so whatever you feel most comfortable with
    Online Community Specialist

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    Opinions are my own, such as mashed potato being bad.
  • fibrobutterfly
    fibrobutterfly Community member Posts: 7 Listener
    Thank you, I love tigger and I always loved it when my friend called me tigger!  Lovely to have such positive comments from the community.  Really appreciate it, it’s how I always was and want to be again . I’m getting there 👍😘

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