Hi, my name is Academic12! — Scope | Disability forum

Hi, my name is Academic12!

Hi I have had schizophrenia diagnosis all my adult life but 7 years ago develioped prolapsed colon, alhtough it was profoundly prolapsed, which was discovered after three years, which were extremely tortuous, tests were despite chronically distressing, time and energy consuming, demoralising and I had to give up work, I can only present the tip of the iceberg and my descriptions of symptoms to the consultant surgeon were put down to schizophrenic ramblings and the delay of three years caused the surgery to be not as successful, in fact it didn't work at all as I was still opening my bowels up to 25 times a day regularly, often through the night so I lost sleep, and basically my sanity such as it was, but my main problem now is, as it has settled down a little over the past couple of years, i now only need to open bowels about 15 times but have to use a mini irrigation kit, presribed me by a nurse specialist, PIP refuse to recognise that not only can I no longer work, and I am 59 now, that I spend most of my daily life either on the loo or laid up exhausted on my sofa, well, I say that, my mind and body have compensated and ignore the pain, demoralisation and incapacitation and cope  just about, I do hobbies etc, and remain cheerful as much as I can, but PIP despite recieving thorough detail about how it affects me, my mental and physical well being, not particularly well as I feel sure you can imagine, they will not allocate points, while my mental health, don't get me started there as I was on depots for as long as I could be until at 58 I found I was so very unsupple I could no longer tollerate it as it hit a nerve wherever it was administered, and I spent two and half months virtually unable to walk about my flat or attend to my domestic chores, let alone get to the shops, and had to pay for private chiropractic treatment, I am needless to say now on a daily tablet, low dose, that is much more suitable and the agony or middle aged muscular issues that were present with the injection are now gone and on this low dose I am no longer inert or emotionally flat, can relate to people and not quite so overweight, but the bowels persist and I feel I should be getting extra help for the masses of extra toilet roll required, water rates from extra hand and clothes washing and bathing and as I say, and as they make a point of the effect of daily life and emotional wear and tear, so how best do you feel I can get it across to the PIP dept that I do need extra help not just for schizophrenia but the intollerable bowel issue as its obviously much more serious than straightforward IBS but I do sense an ignorance and also a lack of sympathy as without being trite, broken bones can be mended, but prolapsed colons are extremely tempramental I have that on authoritiy from one or two medical specialists I have spoken to and its not a pleasant malfunction to have to live with, and compounds my mental health and putting best foot forward does't always seem to go in your favour with them so I feel I can't win, effectively, any thoughts would be helpful.  Fiona

Comments

  • Academic12
    Academic12 Posts: 23 Member
    PS  Sorry but just to be clear, it was of course the symptoms that were tortuous and not the tests, these are of course essential but for some reason, they were not showing up the full extent of the problem for a long time till one particular type of test did reveal that I needed immediate surgery and had without a doubt for three years going by the extent of symptoms.
  • Academic12
    Academic12 Posts: 23 Member
    Sorry, i must add this as I don't want you all on the website thinking I am "brandishing a violin" over all this, I do do lots of hobbies whenever I can and would love to talk to you all about them at some point if that ok, cheers for listening though as wow it does get me down big time you know, sorry :'(
  • Liam_Alumni
    Liam_Alumni Scope alumni Posts: 1,105 Pioneering
    Hi @Academic12,

    Welcome to Scope's online community! It's great to have you here.

    I'm sorry to hear about the problems that you're having - it sounds like you're having a really tough time. 

    How long ago were you told that you have been declined PIP? Have you considered asking for a mandatory reconsideration?
    Liam
  • Academic12
    Academic12 Posts: 23 Member
    Hi, no i did get Pip just not the full rate and as i have two major illnesses i really felt i should but on the assessment breakdown sheet sent me they had not awarded points for the physical side of my ill health.
  • Liam_Alumni
    Liam_Alumni Scope alumni Posts: 1,105 Pioneering
    Hi @Academic12,

    Oh, apologies for the confusion! If you do feel like you could be entitled to more from PIP and are considering appealing then do consider having a look at our website for information on the DWP appeals process, which may be of interest to you.

    I hope that helps. Do let us know if you have any other questions! :)
    Liam
  • Academic12
    Academic12 Posts: 23 Member
    Thanks LiamO Dell, i will take a look .
  • Ami2301
    Ami2301 Community Co-Production Group Posts: 7,946 Disability Gamechanger
    Hi @Academic12
    Welcome to the community!
    Im so sorry to hear what you've gone through, I can't even begin to imagine how distressing all this is for you, however you strike me as a really strong woman! Looking forward to chatting more :)
    Disability Gamechanger - 2019
  • Academic12
    Academic12 Posts: 23 Member
    Hi Amy, thanks for your response.  I look forward to hearing some of your news too xx

Brightness