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Hi from Wiltshire

mudmud Member Posts: 20 Courageous
Hi, I've just joined this forum after spending so long reading discussions here that I exhausted myself! I'll come back another day with my own questions. :)

So just briefly, I have chronic pain and fatigue plus some specific cognitive problems, from various different conditions some of which are diagnosed and some not. I'm not bothered about diagnosis, I choose to learn to manage instead. I also believe I have PTSD but have never sought a medical opinion - started to, but had to prioritise other things; I've never mentioned PTSD in a benefits claim.

I gladly disengaged from the DWP after getting zero PIP when they switched me over (from an indefinite award of DLA) a few years ago. This was the best thing I've ever done for my health, apart from getting out of a poisonous marriage that was making me more instead of less ill. Circumstances (long story) have now forced me to apply for PIP again, and that's why I'm looking at disability websites all over again. Frankly all my instincts AND all my logic tells me it's the wrong thing to do. I want to find a way to get out of doing this. There are other things I need my time and attention for, which also would help my health rather than impacting it the way dealing with The System does.

Meanwhile I'm struggling to keep my spirits up - which I'm very good at, as it's the essential in order to survive living alone! But between time spent on this so far, and having to think about it every day, I am feeling the despair and fear. I'm aware that I look well, sound well, and even online I appear well from the way I write. When I'm less well, I don't get out or get online or get on the phone, so it isn't seen.

For some reason I didn't find the Scope website before - perhaps because someone told me about Benefits and Work and I used their guides for DLA and PIP. But looking at threads here, it is lovely to see how you give each other so much moral support along with good practical advice. Glad to have found you.
"I'm sorry that this was such a long letter, but I didn't have time to write you a short one." - Blaise Pascal

Replies

  • Imogen_SteeleImogen_Steele Member Posts: 42 Courageous
    Hi @mud
    welcome to the community. I’m sorry to hear that you’re feeling low at the moment. This online community is a great place to find support and advice as well as make new friends. I myself have just  applied for PIP and so understand how stressful the process can be. How are you doing today?
  • mudmud Member Posts: 20 Courageous
    Thanks @Imogen_Steele, today I'm just knackered having spent too long at the screen! Managing day to day would be easier if I didn't muddle things and forget to take breaks... in normal life I get it right but anything out of routine and I start making mistake. And knackered makes it hard to stay cheerful. Don't worry, I'll be all right if I sleep ok tonight. Thank you for your welcome.
    "I'm sorry that this was such a long letter, but I didn't have time to write you a short one." - Blaise Pascal
  • April2018momApril2018mom Posts: 2,869 Member
    Hello @mud

    One way to remember things is to write them down in a notebook or on my phone. Feel free to look around the website and contribute to our discussions too. If you have any other questions do not hesitate to ask! Welcome to Scope and thanks for telling us your story as well. 
  • emmarenshawemmarenshaw Member Posts: 712 Pioneering
    Hello @mud welcome to the Community.
  • mudmud Member Posts: 20 Courageous
    Thanks for the welcome, @April2018mom and @emmarenshaw :)

    Yes, I couldn't manage without my phone for reminders through the day - that should be, *didn't* cope before I had a smartphone. Remembering to take breaks is different, though - I don't notice the timer beeping, or notice and switch it off then immediately forget. Some days I do get it right!
    "I'm sorry that this was such a long letter, but I didn't have time to write you a short one." - Blaise Pascal
  • Chloe_ScopeChloe_Scope Scope Posts: 10,652 Disability Gamechanger
    Hi @mud and a very warm welcome to the community, it is great to have you here!

    I am sorry you aren't feeling too good at the moment but I'm glad you have found us. Please feel free to keep having a look around and let me know if there is anything we can do to help you. :)
    Community Partner
    Scope

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    Complete our feedback form to help us to improve your community.
  • Connie00Connie00 Member Posts: 255 Pioneering

    Hello @mud    :) 

     

    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 trust you are having a good day today. I do understand how hard it is to look at the avenues of PIP I do hope you find some answers through our forum.

    its also very hard to find the time to get the right diagnosis, but it is worthwhile, 

    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

    Have a good day

     

    @connie00   :) 


  • mudmud Member Posts: 20 Courageous
    Thanks @Chloe_Scope and @Connie00 , it is so nice to feel welcomed.

    I've spent pretty much all day working on PIP and haven't the oomph to post questions this evening. I never can do "serious" computer later in the day (a bit of social computer, most days - takes lots less energy). I'll get there sometime soon. :)
    "I'm sorry that this was such a long letter, but I didn't have time to write you a short one." - Blaise Pascal
  • linlin01linlin01 Member Posts: 38 Courageous
    Hi @mud, welcome to the site.  My sympathies are with you - I've also got all over chronic pain and have been newly single these past 15 months following a long separation and protracted divorce.  I'm also re applying for PIP due to financial need. 

    My local council welfare rights officer came to my house and filled the form out for me as my hands were too sore to do it in a reasonable time myself.  Have you got anything like that where you live?  They said they will also help me with the other stages such as appeal if I need it.  The person who came to the house was kind and helpful and made me feel less daunted by the whole PIP rigmarole.
     
    I do my best also to keep cheerful - although its often easier said than done.  Keep up the good work!  :)
  • mudmud Member Posts: 20 Courageous
    Hi @linlin01 - sounds like we have a lot in common! I've been single six years, very happy about that but it took me seven years to get well enough to make it happen from when I first lost my health and saw his true colours. Great sense of achievement. ;) Now, dealing with solicitors again to get my maintenance increased as things have changed so much (and I fully expected to be earning at least something by now). And that's what has forced me to try again for PIP which I really am not up to doing, esp. if I don't win without appeal.

    Hadn't thought of asking the council. I'm hesitant to because I didn't have a great experience of their Soc.Services team back when I had an assistant. Also I started a dispute because I owe them money - that's on hold while I get through the solicitors+PIP project! Cannot do two things at once, even if each one is only an email every few weeks!! BUT I will find out if they do do something like this. It all depends on the individual, doesn't it, and it probably wouldn't be someone I used to know. Thanks for the idea.
    "I'm sorry that this was such a long letter, but I didn't have time to write you a short one." - Blaise Pascal
  • Adrian_ScopeAdrian_Scope Testing team Posts: 7,954

    Scope community team

    Great to have you with us @mud. I'm glad you stumbled across us.
    If you have any questions about PIP or anything else at all, please don't hesitate to ask. :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
  • mudmud Member Posts: 20 Courageous
    Thank you @Adrian_Scope , I'll be back before long with detailed questions about the PIP questions! :)
    "I'm sorry that this was such a long letter, but I didn't have time to write you a short one." - Blaise Pascal
  • linlin01linlin01 Member Posts: 38 Courageous
    Hi @mud, did you know that citizens advice will also help you fill in the PIP form?  They can help you with what to say and what to leave out.

  • Chloe_ScopeChloe_Scope Scope Posts: 10,652 Disability Gamechanger
    No rush at all @mud, we'll be here whenever you need answers. :)
    Community Partner
    Scope

    Tell us what you think?
    Complete our feedback form to help us to improve your community.
  • mudmud Member Posts: 20 Courageous
    edited September 2019
    linlin01 said:
    Hi @mud, did you know that citizens advice will also help you fill in the PIP form?  They can help you with what to say and what to leave out.

    Thanks, yes, I'm going to go to them. Way back they used to come to me, but they don't offer it any more - lucky I'm driving again!

    I need someone at the face-to-face with me, don't think I can get that. To be honest I can't remember whether I found out that I can't, or that I can. It's all in the notes I took but not in my head!

    Last time (about 2016 I think), I had an advocate who didn't know me at all, we met in the waiting room before my consultation, and I gave him a list of what I needed him to know but he didn't remind me to say things like "I can but it hurts" or "I can but I couldn't do it every day," etc. He didn't say a word throughout. I was so cross with myself for forgetting that kind of thing because I know perfectly well how to do it! but on the day I forgot.

    Really it cost me effort to make that list because I have difficulties organising information in that way, so it cost me effort and gained me nothing. That advocacy service is still the only available in this area - I will try and get hold of them as soon as I can, in case the problem was only having a few days' warning. (Mind you, I only had a few days' warning of the date, anyway.)

    ... I say "That advocacy service is still the only available in this area" - it could be true, I don't know now... I shouldn't make statements at this time of night (8pm) so don't believe me! This is why I don't do paperwork in the evenings!! :D In the middle of the day I'm perfectly normal (well, sort of ;)) and could *be* an advocate, but it comes and goes. Thanks anyway for saying about the CAB. :)
    "I'm sorry that this was such a long letter, but I didn't have time to write you a short one." - Blaise Pascal
  • steve51steve51 Member Posts: 7,175 Disability Gamechanger
    Hi @mud

    Good Afternoon it’s great to meet you today.

    I am one off the “Community Champion’s”

    Yes I am also in the same boat (Ship)
    in regards to “Chronic Pain” & “Hidden Disabilities”

    I’m very very sorry to hear about your “PIP”

    Are you still going through the form’s???

    Do you have any help going through them???

    Is there anything that I can help/support you with????

    Sorry for all of the questions!!!!!! 

    @steve51





  • mudmud Member Posts: 20 Courageous
    steve51 said:
    Hi @mud

    Good Afternoon it’s great to meet you today.

    I am one off the “Community Champion’s”

    Yes I am also in the same boat (Ship)
    in regards to “Chronic Pain” & “Hidden Disabilities”

    I’m very very sorry to hear about your “PIP”

    Are you still going through the form’s???

    Do you have any help going through them???

    Is there anything that I can help/support you with????

    Sorry for all of the questions!!!!!! 

    @steve51





    Hi Steve, nice to meet you :) and sorry you're in this boat too! :)

    I haven't started my claim yet as I wanted to be fully prepared before getting into the 4-week deadline - and I have a weekend away coming up (seeing friends), so I'll wait till I'm recovered from that and then start the claim. Probably the first week of October, then.

    I think I'm as prepared as I can be - I have practised questions online, and kept a diary for about ten days. The CAB tell me I can't book an appointment until I have the form. I've researched, and they are the only advocacy available to me, and they can't attend the face-to-face with me. I might write a "typical day", have only just thought of that. I see my GP next week and will ask her to write something.

    But the next few days I have to dedicate to packing, planning a day to rest before that weekend so I want to get ahead with packing. Oh, I'm so disciplined ;) not at all in my nature!!
    "I'm sorry that this was such a long letter, but I didn't have time to write you a short one." - Blaise Pascal
  • yingtongyingtong Member Posts: 37 Pioneering
    Welcome to a moonraker,from a moonraker, when I transferred from DLA to PIP age uk in Devizes helped me with a great result.Good luck.🌕🌕🌕🌝🌝🌚
  • mudmud Member Posts: 20 Courageous
    Hi @yingtong ! (I only live here. :))
    Don't think age UK would have me yet. :)
    "I'm sorry that this was such a long letter, but I didn't have time to write you a short one." - Blaise Pascal
  • AilsAils Member Posts: 2,268 Disability Gamechanger
    Hi @mud and welcome to the Community.  It is nice to meet you.  How are you today?  I hope you are finding the PIP process a little easier.  If there is anything we can help/support you with then please just let us know.  Glad to have you on board and I hope you enjoy your time with us as there are lots of lovely, supportive people on here.  All the best.  :smiley:
    Winner of the Scope New Volunteer Award 2019.   :)
  • mudmud Member Posts: 20 Courageous
    Thanks @Ails. Yes, I'm finding people supportive. :)

    I got back yesterday from a weekend with friends, so today has been "cancelled" and tomorrow I have shiatsu (massage) and may or may not get my bag unpacked! Once recovered, then i'll start my claim.
    "I'm sorry that this was such a long letter, but I didn't have time to write you a short one." - Blaise Pascal
  • AilsAils Member Posts: 2,268 Disability Gamechanger
    You are welcome, @mud and very glad to hear that you are getting support from the Community.  I hope you enjoyed your weekend away.  Your shiatsu massage sounds lovely!  Enjoy!  Have a lovely evening!  :smiley:
    Winner of the Scope New Volunteer Award 2019.   :)
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