Hi, I'm AnnetteBoden! I have CFS and am considering applying for PIP + blue badge. — Scope | Disability forum
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Hi, I'm AnnetteBoden! I have CFS and am considering applying for PIP + blue badge.

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AnnetteBoden
AnnetteBoden Community member Posts: 2 Listener
edited August 2021 in Start here and say hello!
Hi My name is Annette
I am a self-employed integrative psychotherapist by profession. I have suffered from CFS (diagnosed 1996) and fibromylagia for many years (diagnosed 2009 but symptoms many years prior crossing over with CFS)
Recently my struggle has worsened and I have had to reduce my working days further to 3 and just 6 hours per day tops.
I am struggling financially due to this as my husband does not work due to ill health although neither of us claim benefits. This seems unsustainable now as I am increasingly getting weaker and cannot do ordinary things such as cleaning, walking etc.
It is a hidden disability as people think i'm fine and just a bit scatter brained with the brain fog, or unreliable because I have cancelled so many events last minute, so I have lost a lot of friends. Family try to understand but lots of advice doesn't help and being told I overdo things -I cannot reduce my working hours any further, and I love my work, it is my life's work and my souls purpose.
I am a very positive happy person normally and have much gratitude for the life I am given but as I get older (56 now) and have arthritis also, I cannot do any of the normal things I used to do.
I am for the first time considering PIP and a blue badge as I struggle to get upstairs and can only walk a very short distance without feeling my legs go to concrete. I cannot lift shopping bags easily and have to have help or unscrew jars in the kitchen, wash my hair, brush my hair-it does make me feel quite inadequate.
There seems to be such negative jusdgement on CFS and fibromyalgia but I am hopeful that the research into 'long covid' will help our understanding of chronic/life limiting conditions that are 'invisible' to the eye.
Thanks so much for taking the time to read my first post-I hope to be much more positive and upbeat and I do a video blog called'keeping it real' as I am always looking for ways to improve my quality of life through food and mindful self compassion etc and I do share a lot with my clients on what I find helpful.
I also wondered if scope can help you fill out pip and blue badge forms?

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Comments

  • janer1967
    janer1967 Community member Posts: 21,964 Disability Gamechanger
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    Hi and welcome to the community 

    We can't help you actually fill out the form but can give advice to help 

    Look in our pip section for further information 

    I would also try a benefits calculator on gov website to see what other benefits you can get 

    You can work and get uc for example if you don't have savings over 16k 

    You claim as a couple and as your partner doesn't work you could get benefits 

    You may be eligible for the carers element as well if you care for your partner and also he may get the lcwra element once assessed 

    Any further questions just ask 
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  • Lee39
    Lee39 Community member Posts: 68 Connected
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    Welcome :)
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  • chiarieds
    chiarieds Community member Posts: 16,103 Disability Gamechanger
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    Hi @AnnetteBoden - welcome to the community, & thank you for telling us about yourself. As far as PIP goes, it's important to understand that it's not about your diagnoses, rather how these affect your ability to do/attempt certain activities of daily living, & how these affect your mobility. Have a look through these activities/descriptors, reading the notes at the end about reliability, e.g. can you do an activity safely, repeatedly, does it take you longer, etc. Please see: https://www.cambridgeshire.gov.uk/asset-library/Personal-Independence-Payment-Descriptors-and-Scores-April-2021.pdf
    PIP is also about how you are on the majority of days. Please do come back with any questions. :)
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  • AnnetteBoden
    AnnetteBoden Community member Posts: 2 Listener
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    Thankyou all so much for your warm welcome and kind support ??I will follow up on all you have shared and I am so grateful ?
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  • poppy123456
    poppy123456 Community member Posts: 54,186 Disability Gamechanger
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    HI,

    If you're on low income then look at claiming UNiversal Credit. As you live with a partner then you'll need to claim as a couple. If you have savings of more than £16,000 you're excluded from claiming. A claim for UC will end any tax credits you may already be claiming.

    If your partner is claiming Contributions based ESA or any pension then these will be deducted in full from any UC entitlement. Use a benefits calculator to check entitlement.
    I would appreciate it if members wouldn't tag me please. I have all notifcations turned off and wouldn't want a member thinking i'm being rude by not replying.
    If i see a question that i know the answer to i will try my best to help.
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  • Cher_Alumni
    Cher_Alumni Scope alumni Posts: 5,741 Disability Gamechanger
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    Hi @AnnetteBoden and a warm welcome to the community from me too, how are you doing today?

    Thanks for telling us some more about yourself and what a lovely photo too!  If you want to add it as your profile picture, just visit this 'edit profile' page, scroll down a little and upload :)

    I hope the information about benefit entitlement has helped clarify what you might be eligible for.  Please do ask away with any questions you might have.

    Also, it sounds like you have lots of lived experience and knowledge from managing your Chronic Fatigue Syndrome and Fibromyalgia so feel free to get involved on the community wherever you like.  For instance, perhaps you might be able to help others in our Invisible Impairment category? (There's no pressure, just an idea!)

    When you have time, I'd love to know more about how you implement self-compassion and mindfulness into your days too.  It's something I've dabbled in, but definitely need to work on to make it a part of my routine!

    Take care and it's lovely to meet you.
    Online Community Co-ordinator

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