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Hi, my name is The_girl_who_lived!

Feeling low, 13 years ago I had a horseriding accident that lead to a severe brain injury. I was supported by my family to regain health and began pursuing a career in health care.

 A month ago, I had a CT that showed areas of 'brain shrinkage'. Due to difficulties with my mobility and cognitive functioning I have been placed on medical suspension from work. I'm really struggling to accept the changes that are happening to my body. I have trouble walking and become fatigued easily.

Waiting on the visit with the nuerologist is scary. Waiting for work to decided if I am physically able to work in the role I enjoy so much, is scary.

The long term affects of my previous brain injury mean that I do not cope well when there is a lot going on. I spend a lot of time in bed or on the sofa reading at the moment. I have no interest in seeing friends or doing things with my partner.

😔

Replies

  • emmarenshawemmarenshaw Member Posts: 712 Pioneering
    Hello @The_girl_who_lived a warm welcome to the community. I’m Emma, one of the Community Champions who are here to help and advise. Sorry to hear of your troubles. Perhaps you could talk to your partner about how you are feeling? The community and Scope team are always here should you need our support. We’re happy to help if you need us.

  • chiariedschiarieds Member Posts: 7,995 Disability Gamechanger
    edited November 2019
    Hi @The_girl_who_lived - Welcome to the community from myself too. I'm not surprised your feeling low; you have so much to cope with just now. When do you see  your neurologist, I hope it's soon?
    I'm going to recommend the following website. I'm sorry if you already know, but sending just in case. There's a section on relationships, & also help returning to work which may be useful. Please see: https://www.headway.org.uk/about-brain-injury/individuals/
    There's nearly always someone here to chat with whenever you want too. I'm a bookworm too; what do you like reading?


  • The_girl_who_livedThe_girl_who_lived Member Posts: 9 Connected
    Thanks for the welcome! 
    I am waiting on the GPs referral to go through to see the nuerologist,  I hoped to hear something this week but nothing so far!

    I have been in touch with headway  though I am finding it increasingly difficult to focus for long enough to get much out of the interaction. 

    I am re-reading the Harry Potter series at the moment, I loved the books as a child and I find it soothing. I have the latest Stephen King and the Book of Dust 2 on my bedside table, waiting until I can focus a little better before I read them. 
  • chiariedschiarieds Member Posts: 7,995 Disability Gamechanger
    Sorry it's taking longer than you'd hoped to see your neurologist.
    Might your partner look at the Headway website which might help?
    My daughter-in-law loves the Harry Potter books too, & has read the series several times! It is comforting to re-visit books you know. I'm in the process of reading books I don't think I may want to keep, to cut down on the number of books I've got, which I know I will want to read yet again. Must admit, even 'tho I love books, I've got to be in the mood to read them.....then I read 3-5 books a week! 'The tatooist of Auschwitz' is the next book I'm going to try. I like many sorts of books.
    Lovely to talk to you again.
  • emmarenshawemmarenshaw Member Posts: 712 Pioneering
    @The_girl_who_lived Sorry to hear your struggling with the Headway interactions at the moment. Perhaps somebody could assist you  with Headway things to make it easier for you. Ah! I’m watching the His Dark Materials series at the moment but, I need to get and read the books. I also love Harry Potter so much.
  • The_girl_who_livedThe_girl_who_lived Member Posts: 9 Connected
    Thanks for the suggestion about Headway. I will speak to my partner about it on his next day off.

    I am thinking about buying his dark materials as I haven't got access to BBC, is it good?
  • emmarenshawemmarenshaw Member Posts: 712 Pioneering
    @The_girl_who_lived No worries, let us know how you are getting on. Yes, it’s a great series.
  • AilsAils Member Posts: 2,268 Disability Gamechanger
    Hi @The_girl_who_lived and welcome to the Community.  It is nice to meet you.  I'm really sorry to hear of everything you have had to cope with and wish you well with your Neurologist appointment.  I hope your partner can help you with the Headway information.  Glad to hear you are enjoying your books.  My husband loves Harry Potter too!  Please keep in touch and let us know how you are getting on.  There will always be someone here to chat too and everyone is lovely and supportive of each other.  If there is anything we can help you with then please just let us know.  I look forward to seeing you on the Community.  All the best.  :smile:
    Winner of the Scope New Volunteer Award 2019.   :)
  • Adrian_ScopeAdrian_Scope Testing team Posts: 7,934

    Scope community team

    Welcome to the community @The_girl_who_lived. I'm glad you found us.
    You might be interested in our Book Lounge. Can't wait to see you around! :smile:
    Senior Community Partner
    Scope

    Your feedback is really important to the development of the online community, so please remember to complete our online community annual survey
  • chiariedschiarieds Member Posts: 7,995 Disability Gamechanger
    Hi @The_girl_who_lived - Just wondering how you're doing, & if you've had a neurology referral yet. Have you managed to get back into reading the books you have?
  • The_girl_who_livedThe_girl_who_lived Member Posts: 9 Connected
    Still waiting on my neuro refferal! Trying not to stress about it too much as that often sends me spiralling into anxiety.

    Also trying to focus on my upcoming appointment with occupational health tomorrow 🙄 struggling with feelings of sadness, just at the thought of being told I will no longer be able to work as a carer. 

    I don't know what my life holds for me anymore, something I am struggling with! 
  • chiariedschiarieds Member Posts: 7,995 Disability Gamechanger
    Hi, I do hope you get your neuro referral soon. It's lovely to read you work as a carer; I'm sure you're missing it. Please let us know how you get on tomorrow. I'll be thinking about you.
  • Adrian_ScopeAdrian_Scope Testing team Posts: 7,934

    Scope community team

    Hope the appointment went okay @The_girl_who_lived. Fingers crossed for you. :smile:
    Senior Community Partner
    Scope

    Your feedback is really important to the development of the online community, so please remember to complete our online community annual survey
  • The_girl_who_livedThe_girl_who_lived Member Posts: 9 Connected
    The appointment was okay, the therapist and I both agreed that work is still not something that I am ready to go back to. 

    I feel okay about this! OH is putting everything down to post-concussion syndrome that's knocking me for six because of my previous trauma. 

    Having a quiet night with my cats and a Modern Family binge 😊


  • chiariedschiarieds Member Posts: 7,995 Disability Gamechanger
    So at least you've got that out of the way, & it's good to read you're OK with it, so can now relax! Thank you for letting us all know how it went. Enjoy the rest of your day.
    :)
  • Adrian_ScopeAdrian_Scope Testing team Posts: 7,934

    Scope community team

    Having a quiet night with my cats and a Modern Family binge 😊
    You can’t go wrong with Modern Family! Have a great week @The_girl_who_lived. Let me know if there’s anything you need from us!
    Senior Community Partner
    Scope

    Your feedback is really important to the development of the online community, so please remember to complete our online community annual survey
  • The_girl_who_livedThe_girl_who_lived Member Posts: 9 Connected
    Wondering if anyone can offer any guidance after attending a welfare meeting at work this morning?

    I have been taken off my medical suspension and instructed to obtain  a sick note ASAP. Unsure why this has happened, I am struggling with my  speech and thinking at the moment so did not ask during the meeting. 

    SSP will not cover the cost of living, unsure if I am going  to be able to receive any further help whilst I am recovering?

    Also, I am 'classified' as disabled in australia, where my accident happened. Unsure why that is not retained here?

    *apologies for my ramblings today, bad brain day*
  • chiariedschiarieds Member Posts: 7,995 Disability Gamechanger
    Hi again. I'll see if @poppy123456 may be able to help you, as I'm sorry I can't answer your query. Any word about your neuro referral yet?
  • The_girl_who_livedThe_girl_who_lived Member Posts: 9 Connected
    I have popped down to citizens advice this afternoon who have set up an appointment for me in the new year. Small steps! 

    Chased up neoroligical appt today as had to speak to surgery about fit note work has demanded today. The Dr who made the refferal is off so I have been told I need to ring back on Friday to find out what's going on. 
  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    HI and welcome,

    There's no disabled register here in the UK any more unfortunately.

    The fit note will entitle you to 28 weeks of SSP. Whether you'll be entitled to claim Universal Credit alongside this will totally depend on your circumstances. UC is a means tested benefit and if you live with your partner you'll need to claim this as a couple. If he works then of course it will depend on household income, whether you're entitled to anything.

    As UC is a means tested benefit then it will also depend on savings/capital. Anything over £6,000 will reduce the amount you can claim and anything £16,000 and over and you won't be entitled to claim it.

    Do you rent or own your own home? Do you have dependent children? If you do have children and you claim tax credits then if you claim UC your tax credits will end and you'll receive everything as 1 sum each month.

    My advice here is to put all of your details into a benefits calculator and see what it comes up with, you'll need to enter your partners details that too, if you're living together.

    If you're not entitled to any UC then you maybe able to claim New style ESA if you've paid enough NI contributions in the previous 2 tax years from working BUT you won't be able to claim this until your SSP has ended. You'll be able to start a claim a month before, with a fit note and your SSP1 form but you won't receive any money until SSP has finished. New style ESA pays £73.10 per week and is payable for 52 weeks, unless placed into the support group and it's paid for as long as you remain in that group. Support Group pays £111.65 per week.

    PIP isn't means tested and it's not awarded based on any diagnosis. It depends how your conditions affect your ability to carry out daily activity based on the PIP descriptors. Evidence will be needed to support a claim and a face to face assessment is most likely. However, a claim for this could take several months. See link for more information.


    Hope this helps.




    Community champion and proud winner of the 2019 empowering others award. This award was given for supporting disabled people and their families for the benefit advice i have given to members here on the community.
  • steve51steve51 Member Posts: 7,175 Disability Gamechanger
    Hi @The_girl_who_lived

    Good Evening & Welcome ☃️☃️

    I am also one of the “Community Champion’s” here at Scope.

    I have also suffered a “Severe Brain Injury”

    This happened in Spain in 1998 at the age off 32.

    Mine was caused by a cluster of abnormal blood vessels (Brain AVM)

    You are following a similar journey as I undertook.

    “Headway” came in very useful whilst waiting NHS rehab.

    I have also seen more “Neurologists” than I have had “Hot Dinners”

    Work which I also ““Loved” had to be “Tackled” in the end.

    All off this was “Written Off In 1998”

    I was given “No Hope”

    I do hope that this makes “sense & is helpful”

    Please please come back to me if there’s anything that I can help you with????

    @steve51






  • The_girl_who_livedThe_girl_who_lived Member Posts: 9 Connected
    @steve51
    Hi
    Thanks for replying. 

    I am simply feeling like the life I have fought so hard for after my original injury is slipping away from me! After such a small blow to my head as well. This makes me feel incredibly vulnerable and the thought of running home to Australia and family is increasingly tempting. 

    With work, I don't know if I should simply be smart and walk away from working as a carer, as this is not something I will be 'fit' to do again for a very long time. Maybe ever, as noone knows how my brain will recover from this secondary incident. 
  • The_girl_who_livedThe_girl_who_lived Member Posts: 9 Connected
    @poppy123456 thank you for the information! I will process this when I am having a 'better brain day' 
  • steve51steve51 Member Posts: 7,175 Disability Gamechanger
    Hi @The_girl_who_lived

    That’s my Pleasure☃️

    Yes I have been in a similar situation myself☃️

    Going from a Manager for over 10yrs having to commute 100 miles per week.

    “Bang”

    Following “Stroke” I 1998 everything “Stopped”

    I was able to find a new job & started driving & had a 2nd child.

    Then in 2005 “Bang” everything went back to square 1 & worse!!!!

    I have got “going again”

    This “Won’t Beat Me”

    It has picked the “Wrong Person”

    I’m “Sure of That”

    I hope that you have had a “Good Day”

    Please please let me know if you need any help/support with your current problems???

    @steve51


  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    @poppy123456 thank you for the information! I will process this when I am having a 'better brain day' 

    No problem. It's an awful lot of information to take it and for this reason you maybe better off speaking to an advice agency near you for a full benefits check for the Universal Credit claim because this is the only benefit you'll be able to claim while receiving SSP. PIP is completely different and not means tested.
    Community champion and proud winner of the 2019 empowering others award. This award was given for supporting disabled people and their families for the benefit advice i have given to members here on the community.
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