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Hi peeps this is why I am here.....

Emilyb81 Member Posts: 528 Pioneering
Won't let me do introduction post so I must be too old now lol so I'm making a general post I think....
  I haven't ever introduced myself I kind of just came on here joined up and have asked for help, advice and avoided doing introduction or explaining why I am here in first place not to be an a-hole but more cos I don't like talking about my own life as I don't think its all that important?! But I need to do things differently because this last few months has been so hard I have caused myself a lot of pain and I have been unable to get over it all partly because it is far from over as I'm still mid way through the process to hopefully sort it all out? And partly because my brain is so ridiculous it won't allow me to stop obsessing!! :disappointed:  So after I keep having little rants here and there and letting bits out on others posts I am going to just say what's happened and how I'm feeling etc and then hopefully I can leave it here rather than staying resentful and depressed about it all every single day?!.....
My name is Emily I just turned 40 this year I suffer from bpd, severe depression and anxiety, brittle asthma, copd, Gerd, ibs, tendinitis and many other rubbish illnesses that make my existence loads of fun! :lol: and I struggle with a lot of things in general....don't mean for it sound like I'm proud of my list of problems I just wanted to put it out there so people maybe understand things a bit better... 
Anyhoo I've been in receipt of income related esa for close to 20 years now and pip for 10 or 11 I believe? My current pip award ended in December but due to covid it was extended to when I could have reassessment? I spoke to pip in November 2020 when I found out about this and they told me I'd be contacted at some point in the future about when my phone assessment will be? While on phone I asked if there was anything I need to do or send in to help he asked if I had filled in a how my disability affects me form I said no I haven't had one? He looked and said there isn't one on system? So I said what does that mean and he just said ah well wait for the text or letter telling you about your assessment and take it from there? So I did I waited and eventually got a letter and text saying my assessment was going to be at end of  February! So I had the assessment.....and it hasn't gone well! 
I genuinely didn't think this would happen to me based on the fact I was already getting pip for 10+ years and my ability to do things has definitely gotten much worse in the last 2 years or so so I thought worst case scenario would be I could maybe stay on the same standard rate both? Or best case scenario I would be awarded enhanced both as I genuinely believe and feel after reading descriptors and knowing how messed up things are for me I should be getting! So to then get a decision in March literally 5 days after they got report saying sorry but we have stopped it all basically because you are fine and have no problem with doing anything! When I'd spent over 2 and a half hours explaining in detail how I can't do certain things and how I struggle with others? I personally find speaking about this stuff really hard so to go into details about it all was difficult but did it because I knew I have to or I'd be screwed as I rely on pip so much? It took me about 3 weeks of daily trying to get myself ready for the assessment call? It was haaaaard So to then get a letter saying basically I'd told them those things for nothing I was fine on the call not anxious at all and she had either not heard me or simply ignored me altogether? I'm not saying this is exactly what's happened but it's how I felt? Well it was very negative is only way I can describe it I mean I obsess over these kind of situations anyway I just can't switch off if I feel I'm being called a liar or feel I'm being wronged or someone else is I literally spend hours and hours of the day arguing in my head and repeating what I said in the phone assessment like a crazy person talking out loud to myself! I told her I can't even manage to walk 2-3meters to taxi door without being helped by the driver or my stick and in report she said she decided I can walk 200 metres unaided??? I told her I can't use Bath or shower and explained the many reasons why. She said she decided I have no problems using Bath or shower?!! I said I can't plan journeys myself and even getting into cars and doors shutting causes me a lot of anxiety and stress due to past trauma and it's the same in any transportation where doors have to remain closed or windows too its very hard to explain but I feel trapped and have to stop regularly to put my legs outside of the vehicle and try to calm myself down for a few minutes then I am normally able to continue the taxi journey? Luckily the company I use regularly knows about my many problems and are very understanding and add time onto my bookings because of these things? Never make me feel bad! Obviously I can't ask trains or buses to stop for me to put my legs out doors so I don't feel stuck?? So I avoid at all costs! The few times I've tried to get trains I've blacked out so anyway I explained all that and was told I don't have issues around travelling??? And another example of how wrong it is was she called me back half an hour after assessment had ended to ask me who had diagnosed my tendonitis (that has caused me to fall over 5 times in last 2 months alone) I said my gp she said OK just wanted to make sure she had got it down right? Then in report it says specifically I have no issues with any of my limbs??? There was more these are just a few examples it was so hard to read because It was  blatant she had gone against all I had said apart from 4 points on daily living needing prompting to eat and bathe apparently?! Then 4 points on mobility because of the 200 meter thing I think or maybe something else but in any case neither was enough for any awards so that was that! :disappointed: And I now have had to go through months of waiting for MR decision it took 3 weeks to even receive my letters etc and now 7-8 weeks on from that I'm still none the wiser! I wish if they were going to say no they would just do it so I can start tribunal process.... and I know il probably have to go to tribunal because they aren't likely to say their colleagues were wrong?! And I have to keep proving myself when the whole thing should of at least stayed the same as I was awarded it before and nothing had improved far from it? The whole thing just made me feel hopeless and pointless and just rubbish more rubbish and pointless than usual!! Also I knew I wouldn't be able to do what I need to anymore as I used most if not all of both pip awards for transport to and from hospital appointments etc so then the next envelope I opened after I'd finally stopped crying etc maybe 4 hours after the pip one was from esa saying because I have had a change in circumstances they were changing the amount of money they were paying me too so I lost another 70 pounds a week as they stopped the sdp I was receiving before too? So for someone who is already in a bad situation mentally to get 2 absolutely unfair and life changing decision letters back to back the same day (or even week) is not good and I just wasn't able to process it properly I was alone, distraught, unwell and I was being told I'm now going to be unable to even cover my rent (I can't have housing benefit here) so I pay my own rent! Also can't attend hospital specialist appointments either so my case will get shut as it has in past if I can't attend as too unwell so not being able to get there will be another reason to have to start all over again with referrals and waiting lists etc!! As I was now losing 700 a month overnight!! And I know its the wrong decision and I know I am entitled to this help as I keep saying because I was given it twice before no questions asked?! First assessment was in my home and the second didn't even happen because they had enough evidence etc?? So it was even more frustrating in my head because I just don't understand how they can't see they are then saying the previous times should not of happened then??? I should of never been given any pip?? That's not right!! It felt like I was literally being punched in the brain?! Also my heart was pounding my ears too I couldn't see properly everything was kind of white and seeing stars as I call it my breathing was so bad I was in full on panic mode!
I don't know why I'm saying all this I guess I just want or maybe i need people to understand I am not normally a negative person I am normally non existent? I don't go anywhere, see anyone, speak to people or have an opinion on anything much because I think the world would be a better place if I wasn't in it most of the time? So I keep having these little rants or moan ups as I call them because I am trying so hard to keep my feelings inside as I always do but for some reason each time I see/read about others going through so much stress and aggro due to similar things happening to them it just keeps coming out sideways? It's like it's happening to me all over again? I have previously been a person who supports others if they are struggling and ignore myself completely so I hate seeing me going on about myself on other people's posts etc?! I then beat myself up massively because I need to shut up I tell myself that constantly?!  I don't know its just a lot to handle and I am posting this now to get it all out once and for all? I feel I have been treated unfairly and I'm not just feeling sorry for myself! It is a rubbish situation? It caused  me relapse big time with self harm etc and I know people will say its not their fault and I'm not saying me being unwell is because of them I've been like this a looooong time! However I do believe that more needs to be done about these decisions being thrown out to people without any thoughts about how getting them may affect someone? Taking pip away from someone who has had it for over 10 years is not something they should just do overnight like that? And the fact esa also didn't think to even wait a week or two to hit me with another rubbish situation is beyond me!! How on earth is it OK to do that to someone who is already struggling? I know there's probably no point me moaning and I am still going through the process like everyone else and I hope and pray it all gets sorted out asap for many reasons! But since I have been here I've been told and have now told other people that calling dwp liars and attacking the way they do reports etc isn't helpful to our claims and I get that but why do they get to keep doing it?? If we make a mistake they take money away from us fast? Yet these people are allowed to keep doing the same things over and over again causing many people who are already poorly to get worse and we have to just go along with it because it's the only way to get pip? And I am just fed up of reading it! I mean I know that nobody applies for pip thinking they aren't entitled to it? And I understand not everyone is going to get good news after an assessment? But I genuinely believe in my heart that something needs to change in how people are treated like they do not matter at all and almost tested to see how much they really need or want pip? The people who are already at their most vulnerable and lowest point being forced into a worse situation it just doesn't seem right!
And also again surely if someone has already been on it and their situation has not changed/improved then they should just be awarded again? I don't understand how that isn't obvious! I mean I do believe and I have probably said it before in one of my many moaning posts on others enquiries I believe my whole situation is like it is because they had no pip form from me no evidence whatsoever and didn't ask me to do any? So obviously my claim was always going to stop and the man in November would know how important a how my disability affects me form is or I think people said it's a pip2?? And then maybe this could of been avoided? And I hope it is for others who are being re-assessed? I also feel so bad for new claims who are ignored in same way I was in assessments because it has to be one of the most frustrating feelings I have experienced in my life!! Anyhoo I had to get it all out as I have done in bits always on others posts! And hopefully I will stop doing that now? And I'm sure people have got better things to do than read all of this drama! But as selfish as it may sound it is more to try and stop my mental health going any further downward? I have no idea how to stop thinking about this whole thing its literally on my mind daily a lot of the time no matter what I am trying to do or how hard I try to distract myself! And like I said before whenever I see someone else struggle with the same things it keeps playing over and over in my head!
So I pray making this post will finally help me to shhhhh internally and externally ??? sorry I know this is a long post /story! But getting it out is better than keeping all locked away in my head it's already full of nonsense lol! Thankyou to everyone who has reached out to offer support and advice since I joined it has been very helpful and nice to know there's a place or places people can go and not be judged etc! Take care and stay safe! ?❤️?


  • janer1967
    janer1967 Member Posts: 16,473 Disability Gamechanger
    Hi there 

    It is good you have opened up to how you are feeling and I hope this helps you 

    I won't go into your PIP claim as I know you have made many references to this and discussed with others in similar situations  

    Just want to say we are around to support you where we can 

    Take care 
  • Emilyb81
    Emilyb81 Member Posts: 528 Pioneering
    Thank you @janer1967 I do feel better getting it all out and going to contact my gp tomorrow afternoon if I haven't heard back from mental health people again ?? so I will get out of this hole hopefully! Take care! 
  • leeCal
    leeCal Member Posts: 6,503 Disability Gamechanger
    Good luck with it @Emilyb81 ?

    “This is my simple religion. No need for temples. No need for complicated philosophy. Your own mind, your own heart is the temple. Your philosophy is simple kindness.” 
    ― Dalai Lama XIV

  • Emilyb81
    Emilyb81 Member Posts: 528 Pioneering


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