Disabled people
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Feel like a fraud-hidden disability

Hi I’ve been considering for a while whether or not to write this and how to ask.
To me a disabled person is someone in a wheel chair, limited walking capabilities or mentally infirm.
NONE of which I want to be classed as or accept limitations.

I used to be out all hours and weathers with my job until I started with all over body pain and diarrhoea for weeks- at first I completely ignored the situation and it wasn’t until I soiled myself while out for an evening meal- only then I was prepared to accept there was a problem.

Fast forward and I’m at a point where I ‘m tied to the toilet for hours a day, shaking and about to get evicted as rent wasn’t being paid.

After thinking I had cancer I had cameras both ways which I found invasive and only glad no cancer found.

Years ago I applied for a blue badge as I couldn’t walk far and specialist sent supporting letter- I was turned down as didn’t fit criteria.

Fast forward and to my dismay I’m the prescription junky I vowed to never be, the simple fact being I cannot make it out the house without taking tablets or I’m stuck on a loo for hours.

I used to get Direct payments and I have managed to return to work in a limited capacity self employed, I still flake out from time to time and it takes me 2-3 hours to get out the front door each morning.

I’ve had several accidents where I couldn’t get to the toilet in time and planning a journey around a toilet isn’t fun.

Sadly my job is manual work as all I could get paid for, I avoid heavy lifting as I end up with hours on the loo and getting wet or cold my body seems to want to shut down on me.

So getting to my question I have written diagnosis  Autism / Fibromyalgia And my friend said I should re apply for a blue badge- I have been 100% honest and explained my toilet issue my main problem.
The nice person said my heath issues I’m Eligible.
My fear is being seen running for a toilet and being abused for using a blue badge, I know the issuing authority is aware of my concerns- but I still feel uneasy even though I have been 100% honest and not tried to make my issues worse than they are.

I’d rather park on a yellow line than use a bay, I just feel I will get abused or reported as seemingly nothing visible  wrong with me.

Really looking for someone with similar experience 

Replies

  • pollyanna1052pollyanna1052 Member Posts: 2,032 Disability Gamechanger
    Hi, I`m so sorry you`ve suffered all this stress and anxiety. So didn't you get the bowel issues sorted fully? Sounds like severe IBS or maybe colitis...I`m just going by experience of myself and other people.
    In trying to answer your fears of possibly being abused when using a disabled parking bay, with a valid blue badge is this.....
    You know your eligibility is true and so anyone who is inconsiderate enough, not to realise or accept, that NOT ALL DISABILITIES  are visible, then that is their look out.

    Do not stress yourself further about this........park in a disabled bay when the need arises. Don't park on double yellow and risk a fine.....do what you are entitled  TO DO.

    Best wishes and take care xxx
  • April2018momApril2018mom Posts: 2,869 Member
    Hello @WhileIBreathIHope

    Don’t stress anymore about this. Who are you seeing for your bowel problems? A urologist can help. 

    I have had the same issue. When my son is not with me I don't use his blue badge. 
  • woodbinewoodbine Community Co-Production Group Posts: 4,522 Disability Gamechanger
    OP never worry about what other people think, and just a thought are you claiming PIP ? sounds like you might be able to
    "Putting a child into care, isn't caring for a child" (T.Rhattigan)
  • WhileIBreathIHopeWhileIBreathIHope Posts: 216 Member
    I saw a consultant years ago after a months of housebound by a toilet and sleeping on or by the toilet,I had endoscopy both directions and polyps found but no cancer.
    I believe pancreatic function considered and they were going to do a diagnostic nuclear medicine- but that never happened.

    I used to get Direct Payments, an council funded advocate and a key worker prior to this on basis of my autism diagnosis. I had a gentleman who also worked at National Autistic Society come round- I didn’t realise how useful this was until it stopped.
    However as my health worsened and austerity began to bite I was forced while suffering incontinence to a CQUIN assessment after being stuck to a toilet all night as my Direct Payments were switched off and promptly back on again after a sham assessment .
    I videoed the visit and the advocate was disgusted as they tried several times to book an appointment and cancelled multiple times at last minute to try and split me from council funded and recognised advocate.
    I’M SURE THIS WAS ILLEGAL IN MANY WAYS.

    So while badly ill and having house visits from the doctor I got a letter telling me my condition had improved, how Autism is cured I do not know as life long and the fact I was housebound was conveniently ignored as direct payments cancelled and asked for any money remaining to be given back- told them to foxtrott Oscar.

    I had terrible problems with DWP who cancelled my benefits for not attending a meeting they sent a cancellation letter to me and I kept letter as proof and had MP struggle to get reinstated -before I risked eviction for rent arrears.
    Fast forward to MP changing and DWP write saying I’m entitled to nothing and my father passed away at the similar time- it was awful time.

    My family run a business and I help out 1-3 days a week, though it has been very very slow so burning through what little I saved last year, so I have been selling some old possessions on eBay and made some things to sell.

    I currently get £327 every 4 weeks for old style DLA, I’m certain this is middle rate mobility and lower rate care or maybe other way round. Without this we would truly be in deep trouble.

    We used to get child/working tax credits, though an error on HMRC part they cancelled as if never eligible- rather than reduce any overpayment out of later payments- they demanded thousands back immediately from my partner- told me to mind my own business and send penalties and debt collectors letters from multiple companies while we complained repeatedly and are awaiting a tribunal we still get grief from HMRC.
    Bottom line my partner has nothing of value, earns £400 month Before fuel, insurance  etc so nothing to take and the car is mine.

    As you can guess all of this it is a miracle my partner and I are still together and I wonder how many relationships have broken down through austerity and callous DWP and HMRC behaviour.

    The best we have managed as a family holiday ( last one a decade or more ago ) is visiting relatives for a weekend in November.

    I’m hoping the item I sell on internet will cover some of the costs of children’s school trips, but our eldest is at secondary school and it seems constant drain for xyz.

    Sorry if I waffled on, but there isn’t anyone to talk to locally and easier to tell strangers than people we know as whole situation plain embarrassing.



  • 66Mustang66Mustang Community Co-Production Group Posts: 5,100 Disability Gamechanger
    I agree - you just have to think, “who cares what other people think?”. If someone wants to think you are not disabled going by how you look, that is their own problem.

    pollyanna1052 said: Don't park on double yellow and risk a fine.....do what you are entitled  TO DO.
    I believe a Blue Badge does entitle you to park on double yellows in certain circumstances e.g. as long as you are not parked dangerously or blocking traffic.
  • pollyanna1052pollyanna1052 Member Posts: 2,032 Disability Gamechanger
    66Mustang said:
    I agree - you just have to think, “who cares what other people think?”. If someone wants to think you are not disabled going by how you look, that is their own problem.

    pollyanna1052 said: Don't park on double yellow and risk a fine.....do what you are entitled  TO DO.
    I believe a Blue Badge does entitle you to park on double yellows in certain circumstances e.g. as long as you are not parked dangerously or blocking traffic.

    yeh, I know, but just to be sure I prefer not to park on them. Like you say `in certain circumstances`...so best to avoid them. x
  • 66Mustang66Mustang Community Co-Production Group Posts: 5,100 Disability Gamechanger
  • WhileIBreathIHopeWhileIBreathIHope Posts: 216 Member
    woodbine said:
    OP never worry about what other people think, and just a thought are you claiming PIP ? sounds like you might be able to
    If I’m honest the brutal stories in the news and my friend with multiple spinal surgeries and crumbling discs and spine got screwed over royally for 2 years before all reinstated.

    I’ve never filled the forms out and believe that Key workers, social workers and alike are used as gate keepers to any services- filling a form out yourself for DWP is as good as lying even if your not.
    First hand experience of DWP Atos Lima and Maximus Health lead me to believe that a social workers work years ago less likely to be challenged- I know at some point they will find a reason to lie and stitch me up, but live in hope a brown letter won’t arrive soon.

    Thank you everyone for replies, I feel a little less concerned.
    The rules you have been talking about I found this is helpful this afternoon.
    https://www.citizensadvice.org.uk/benefits/sick-or-disabled-people-and-carers/help-for-disabled-travellers1/blue-badge-scheme/using-your-blue-badge/

    I’m actually looking forward to the post which is a miracle, as I normally dread the next bill.
  • mike62mike62 Member Posts: 34 Courageous
    Hi @WhileIBreathIHope
    I went through a period around 2012-2014 where I got a stomach pain and had to rush to the loo quick as well. Twice I nearly passed out in a restaurant having not eaten very much all day till later on. I have dashed into disabled and cleaning in progress loos.
    It was running my life forcing me to stay in certain places and not eating anything for hours until I got home.
     A test showed I wasn't allergic to gluten and things. I then cut out sugary things like choc, sweets, cakes, fruit yogurts, coffee, sugar in coffee, tea etc. I worked in a school and had school dinners and cut out stodgy pies, pastry, packs of scones, bread, biscuits. After 5 days I got a headache and is normal as the body/brain has to adjust. I got caught a few times like you.   
    My situation improved so I'm less worried about going out although I don't push it. I don't eat desserts much when I go for meal even though I might fancy it.
    Not sure if my solution will help you but thought I'd tell you. Also pain killers for my trapped back nerves give me bowel trouble so I stopped them. Good luck.
  • WhileIBreathIHopeWhileIBreathIHope Posts: 216 Member
    mike62 said:
    Hi @WhileIBreathIHope
    I went through a period around 2012-2014 where I got a stomach pain and had to rush to the loo quick as well. Twice I nearly passed out in a restaurant having not eaten very much all day till later on. I have dashed into disabled and cleaning in progress loos.
    It was running my life forcing me to stay in certain places and not eating anything for hours until I got home.
     A test showed I wasn't allergic to gluten and things. I then cut out sugary things like choc, sweets, cakes, fruit yogurts, coffee, sugar in coffee, tea etc. I worked in a school and had school dinners and cut out stodgy pies, pastry, packs of scones, bread, biscuits. After 5 days I got a headache and is normal as the body/brain has to adjust. I got caught a few times like you.   
    My situation improved so I'm less worried about going out although I don't push it. I don't eat desserts much when I go for meal even though I might fancy it.
    Not sure if my solution will help you but thought I'd tell you. Also pain killers for my trapped back nerves give me bowel trouble so I stopped them. Good luck.
    Hi Mike, thank you for your reply, I have been through various tests and it was thought I had a wheat intolerance and I believe part of the issue was psoriatic arthritis drugs I had a prescription for and told I never had years later.

    I’d like to be cured as I’m sure most people would, I believe gut bacteria at one point were effectively poisoning me as I went through one point it was bad enough to be admitted to hospital and registrar or whatever they were called furious at junior doctor as thought I could be contagious-to be fair it was like a horror movie.

    I wonder from your description if possibly gut flora feasting on sugars in foods and producing an allergic reaction, I wonder if there is a safe way to modify them?


  • mike62mike62 Member Posts: 34 Courageous
    Hi again
    I read about gut bacteria, candida, sugar and all sorts. They thrive on sugar especially processed type giving rise to ibs. You get some speakers about many subjects. These are scientists, biologists, maths, space, finance, health, statins and loads of subjects. Generally about 20 to 60 minutes. Its free and great to learn things. If you go onto YouTube and type tedtalks bacteria then click a video you think may suit. I watch many of them.
    Some people have gone on a different diet so bad bacteria dies down and the different food feeds good bacteria.
    Love to hear what you see or cant get tedtalks working.
  • WhileIBreathIHopeWhileIBreathIHope Posts: 216 Member
    mike62 said:
    Hi again
    I read about gut bacteria, candida, sugar and all sorts. They thrive on sugar especially processed type giving rise to ibs. You get some speakers about many subjects. These are scientists, biologists, maths, space, finance, health, statins and loads of subjects. Generally about 20 to 60 minutes. Its free and great to learn things. If you go onto YouTube and type tedtalks bacteria then click a video you think may suit. I watch many of them.
    Some people have gone on a different diet so bad bacteria dies down and the different food feeds good bacteria.
    Love to hear what you see or cant get tedtalks working.
    Just a disgusting and yet interesting question:- I wonder if fecal samples have been cultured in a lab, to see the effects- relative told me of a chap who’s gut flora brew alcohol.
    just a thought there may be some academic research papers to be found
  • thespicemanthespiceman Member Posts: 6,408 Disability Gamechanger
    edited October 2019
    Hello @WhileIBreathIHope   Pleased to meet you. Sorry to hear what you are going through.

    Please may I suggest this organisation.

    Bladder and Bowel Association..

    https://www.bladderandbowel.org/.

    Often has a lot of information and advice on bowel issues and other guidance.

    Please if I can help with anything please get in touch.

    Happy to be supportive.

    Please take care.

    @thespiceman
    Community Champion
    SCOPE Volunteer Award Engaging Communities 2019
    Mental Health advice, guidance and information to all members
    Nutrition, Diet, Wellbeing, Addiction.
    Recipes
  • WhileIBreathIHopeWhileIBreathIHope Posts: 216 Member
    edited October 2019
    Thanks for the advice, received a Blue Badge Digital Service email saying it has been processed and valid 3 years and arrives 7 working days.
    tells me a code six long combination of letters and numbers- do these have a coded meaning as seems a little short for a full code?
    this will be life changing as I will be able to venture further without the risk of chronic stomach pains, cold sweats and a panic attack at real risk of getting caught short as repeatedly in past.
    thanks.
  • mike62mike62 Member Posts: 34 Courageous
    Hi @WhileIBreathIHope
    Yes I think I did read about gut fermenting to get alcohol. Scientist took fecal from one slim twin and injected it into her overweight sister and she lost weight.
    I also saw a good talk on tedtalks suggesting that gut bacteria controls the brain. His drawing and sketches are very clear and easy to understand (I'll send you the link if I find it). Talks about the billions of bacteria grow with their food e.g. sugar for bad bacteria.
    The bad guys push out the good guys and make the brain adicted to sugar. By going on a sugar free or very very low and then eating healthy foods the good guys have a chance to grow more than bad guys. But you have to keep this up for several months to kick in. Interesting subject.
    Regards mike
  • mike62mike62 Member Posts: 34 Courageous
    Hi I found the tedtalk video on you tube its your brain is not in your head. By Dr Gundry.
  • thespicemanthespiceman Member Posts: 6,408 Disability Gamechanger
    edited October 2019
    Hello @mike62   Pleased to meet you. The science of gut health is called Probiotic health.

    We have in our guts stomach our bodies as you said millions of bacteria some good some bad some essential.

    This is something I am interested in as I know it finding an equal balance to maintain the level of bacteria. Often known certain foods are good to help the bacteria thrive the good bacteria.

    One of the science bits around this is the health of good bacteria helps the body fight infection and stimulates the antibacterial properties of any food you may consume.

    Antibacterial foods include Lots of fruit and vegetables. Like Onions, Peppers, Garlic, Leeks, Leafy greens, Citrus fruits and Apples, Pears.

    Other are Pulses, Beans and Yoghurt.  All the Med vegetables. Zucchini, Aubergines, Tomatoes.

    Certain diets and regimes offer a good balanced healthy choices. I used the Med diet and adapted to my own needs.

    The cuisines and cultures of Southern Italy, Spain and Greece, South of France helps against disease and major health  complaints.

    I had an addiction and turned to this diet and also much of the nutrition. That these countries offer.

    Now sorted I believe the combinations of Grains, Pasta, Pulses, Olive Oil, Herbs, Spices.  Low fat and lean meat plenty of vegetables and fruit plus yoghurt helps me.

    When you had a stomach and bowel issues, due to alcoholism. No one tells you that.

    Even clean after 12 years. Still have some issues.  Mental health is one .

    Yet with this diet, ended up being interested in the science of food.

    Obtained qualifications. Now use my knowledge to good use on here. As employers do not wish to know.

    I would recommend the books of Doctor Ian Marber who is The Food Doctor.

    Lots of interesting science and meanings and looking at nutritional values of food.

    Pleasure to talk to you.

    Please take care.

    @thespiceman






    Community Champion
    SCOPE Volunteer Award Engaging Communities 2019
    Mental Health advice, guidance and information to all members
    Nutrition, Diet, Wellbeing, Addiction.
    Recipes
  • mike62mike62 Member Posts: 34 Courageous
    Hi @thespiceman @mike62 here.
    Thanks for your interesting comments and book info, might buy that.
     I've read and agree with what you have written. Also just drinking water if a person has real bad bowel / ibs trouble. proper green tea (not twinnings stuff) can help. My wife is Japanese and she gets good tea. 
    After I got it under control I found I could sneak back into some naughty food but not go crazy. For example if I am going out somwhere in the morning I'll not have any breakfast. Also like to know if bathrooms are close by just incase.
    Some speakers have said that fasting helps to reset the stomach and gives the body a rest then eat the foods that you mentioned to promote good bacteria.
    I'm not a good cook to be honest and tend to eat simple but healthy food but do have treats aswell.
    I'm interested what food course you did, was it interesting and worth it? Seems like it.
    Do you think the UK & US have lost the plot with the diet that's eaten?
    Take care you as well @mike62
  • pcoventrypcoventry Member Posts: 149 Pioneering
    66Mustang said:
    I agree - you just have to think, “who cares what other people think?”. If someone wants to think you are not disabled going by how you look, that is their own problem.

    pollyanna1052 said: Don't park on double yellow and risk a fine.....do what you are entitled  TO DO.
    I believe a Blue Badge does entitle you to park on double yellows in certain circumstances e.g. as long as you are not parked dangerously or blocking traffic.

    yeh, I know, but just to be sure I prefer not to park on them. Like you say `in certain circumstances`...so best to avoid them. x
    Unless there are single yellow lines on the pavement next to them - you are allowed to park on double yellows for 3 hours - you can park in resident bays without a time limit. You can park in bays with no time limit on public roads.

    I was reported once because I pulled up on double yellows needing the loo ( we have disabled radar loos in the town centre) - A Police Officer asked to see my badge - and when he had he gave the guy who reported me a right stripping down and telling off. I just laughed and drove off.
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