Ok, so I've hit a wall.

As many of you know I sustained a TBI in Oct 2013, I seemed to recover miraculously and was running again, going to concerts, back at work, I was feeling very poitive. However, the past few months things have taken a major nose dive; one of my best friends has cut contact, I have no idea if my partner and I are even a couple anymore, he won't give a difinitive answer when I ask him whats going on, we barely see each other anymore, I started to find my job harder to do and then the charity manager (who was extremely supportive of me and a wonderful woman) left and a new one started. The new one, not so supportive, within a week I hit a wall and have been signed of with stress ever since. 7 weeks so far, I went back for a few hours and cried the whole time. So was signed off again, I have since resigned and won't be going back. I then get a letter from DWP to say my PIP has been stoped because after another assessment I no longer qualify. I have been marked 0 for things I said I struggled with, even communicating; during the assessment I could barely speak because I was so anxious my brain wasn't functioning properly. I. Know I can appeal, but I could really have done without the added stress and worry. I'm just so fed up and depressed, I'm trying to stay positive but my positive supplys have run out. I feel so lonely and a shell of my former self. I just don't know what to do any more.

Sorry for the moan, I just had to get it out and I know you guys get it xx

21 Replies

  • sorry to read this! you could try applying for E,S.A (Employment support allowance) that should give you more flexabilty,hubby and i have found that,that way you can look for work that hopefully will suit you better,afraid i cannot give you any realionship advice! hope everything turns out for the best xx

  • Hi Jennaberri

    You don't need to apologise for letting it out I'm reasonably sure that if haven't all done it already we certainly will at some point.

    I guess you are a very self reliant and competitive person with yourself.

    It can be really difficult for partners to deal with. One of the first things I did when I was getting speech back was tell my hubby to back off cos I needed to do it on my own. Interesting times.

    It may be time to consider counselling both for you and as a couple because the genuine accepting of how we've changed mkes a lot of difference as does including your other half .

    If you can't do that then try to take some time out and prioritise what it is that you want and is achievable.

    Hoping you get relief soon



  • It seems to be a common thing, bouncing back into everything then the realisation hits that things are not so great after all.

    Get yourself refered to neuro psychiatric folk who can help you with difficulties you are facing.

    It's so dis heartening when you hit a brick wall but if you take the time to recover at a slower pace and ease back into a working role at a pace you can manage, you may find a more workable life.

    It is sadly something that can happen, bouncing in and out of work. I'm not sure if you have looked at the sheets from headway. They were very helpful for me when I needed to see the folk at the job centre. I got ESA. It was work related activity group I was pu into.

  • Hi there. What's ESA please?

    Vicky x

  • employment support alowence

    being replaced wiv pip personal indipendent payment

  • Hey love, I'm so sorry to hear all the trouble that you are suffering at the moment with work and your on off partner.

    I can't give you any extra advice than others have all ready told you, but the one thing I think I could help you with is your relationship, if he's not giving you a definite answer with if he wants to be with you or not, I think you should take a break from him, and concentrate on you and you alone.

    Hope that helps? Lisa85 xx

  • Please do not apologise. It seems all aspects of your life are causing stress and unhappiness. My neuropsychologist saved my sanity and really understands my problems. My relationship was very strained about 18 months ago. I stayed with my son for three months. It was not just my BI, there were other issues with his family I could not cope with. My partner did come to sessions with neuropsychologist, and it helped. Perhaps to reduce stress you do need to know what is happening in your relationship. Personally this would increase my anxiety, the unknown.

    I would apply for ESA and, and perhaps contact local Headway group or CAB have benefits advisors to help. I have just completed my PIP assessment, as moved from DLA to PIP. The form is a nightmare, and my neurologist said most people are not receiving PIP when they should be, and most of his patients are having to go to tribunal . I have an ATOS doctors appt at end if August and dreading it.

    I thin having three majors issues in your life must be stressful. I hope by dealing with issue one by one , your life will improve. I hope you can gain professional support and this will help. If your partner cannot give you an answer, perhaps as painful as it is use all your energy on you, and not worrying about your relationship. it is a very lonely place, without a job, BI and a stress of a relationship status. Believe me I have been there, but I have come through. I now live on my own, have a voluntary job and two years ago my life was very bleak. If you want to chat any time I am here or message me. Please contact Headway, you feel better with professional support

  • Sorry to read that you had a tough time, you have had wisdom to come through it.

    Regarding PIP Capita assess in some parts of the UK. i had a capita assessment recently. i dont know if this is just my experience but i thought it was ok. i am not sure if capita have been trained to be nice and even helpful

    the form i know is quite strenuous. i tried to be as totally comprehensive in it as was humanly possible as well as writing to the point system revealed in The Guide To PIP handbook on

    (i am honestly not trying to plug this website , its just that i think it can possibly help people)

    prior to assessment i thought be pragmatic and thought that if in any way i think that the assessment is not going awfully well, that i would make sure of it that the assessor accurately evidenced my disabilities. But, my apprehension was needless, because in a couple of places this assessor was actually supplementing what i said on the form, where it could have done with a bit of supplementing, and i guess endorsing it. i am a little surprised that i have to say fair play.

    i could see that she was subtly trying to catch me out as regards what i had said on the form once or twice, but you'll know what your disabilities are so it wont be possible to catch you out.

    if youve not photocopied your form, just try and remember what youve said on it, make a note of it, and go over it the day before your appointment.

    if i dont think that i am awarded the right amount of PIP i wil straightaway go to appeal. but the assessment went quite some degree better than i thought it would.

    take care

  • What is DLA PIP &ATOS please? I am new to this and have no help at all 18 months after a brain aneurysm so don't understand the related jargon! Or what I should claim or even who can help me contact what is out there. I would like to go to a support group to see how others manage. But there is nothing like that with the Reading or Henley group of Headwaty so I'm feeling very isolated.

    Best wishes Vicky xx

  • Hi Vicky

    Sorry for not responding sooner, DLA is a benefit for the disabled or those with a long term medical condition (Disability living allowance). It is being phased out and has been replaced by PIP (Personal independance payment), ATOS is the company that does the medical assessments.

    If you can pop down to your local Citizens Advice, that is what I did; they were very helpful and will even help you fill in forms and make phone calls (well they do down here in Plymouth).

    I hear you on the isolation, I feel it too. I have asked about possible meetings with peole like me but it wasn't recommended for me. It is so hard when life changes so quickly and your confidence has been knocked. This forum is a huge help, the only downside is we all live so far away from each other and can't meet up for a warm bevarage and a chin wag. We're all in the same boat but unable to reach each other in person.

    I wish I could help more xxx

  • Oh shame. You sound so stressed. I hope you manage to get ESA. How about appealing for you PIP, as it sounds like you may need it still.

    Good luck and all the best!

    Xx 😘😉

  • Dearest Jenna

    My heart goes out to you sweetheart - you have been through so much and deserve lots of love and support. Could you manage a visit to the Citizens Advice for your benefits entitlement help or is their a claimants union nearby. ESA is a great benefit and I am sure you will be entitled to this. When we have TBI I think it is very important to surround yourself with people who support and love you. We feel more vulnerable and sometimes you meet people who can't get their own heads around our silent trauma- sounds like your job was to much.

    You obviously have lots to give on so many fronts and are talented and thoughtful. Can you take a few steps back and in the silence maybe some answers will come to you about what sort of work you would like to do next and whether you think your partner is right for you. Be as loving and kind to yourself. Have you rung Headway and asked for advice on benefits.

    Maybe start the week by making a new claim for ESA - ONE STEP AT A TIME DEAR Jenna. We are here for you. Big hug brave and lovely woman- you take care xxx

  • I "failed" an independent medical assessment for a blue badge so I understand How you feel about having to appeal the decision. The fact that I had to appeal triggered depression that had been hovering in the background, mine was also because of an inability to communicate when the assessor asked at first factual questions I could answer. He then said "over to you" I knew what he meant but couldn't communicate why I needed a blue badge. I found out about" Voiceability" who could act as an advocate for you if you need help at an appeal.

    I hope you are soon are able to go back to doing the things that you enjoy and get your positivity back. You seem to have achieved so much in just 2 years since the TBI

  • What is voice ability. I am facing a tribune real now because I failed to let DWP know if my divorce status in the middle of my aneurysm. I also have no benefits and no counselling although I live alone at 66yrs old. I am active articulTe and intel legend and they seem to think I therefore am fine. I am so far from fine I could just give up And die on many days. See another effect is up and down times for me. Some days I can do things - others not a chance.

    Anyway nice to hear you.

    Vicky xx

  • Voice Ability is a charity that can represent you at a tribunal. They can act as an advocate and speak on your behalf. Before my brain injury I was a teacher and am therefore quite articulate Now I struggle at times but am better when writing things down!!! so I didn't think that I would have a problem answering the questions at an independent medical assessment until I got there and was asked an open ended question! When I phoned Voice Ability they said that they could represent me if I had to attend an appeal for my Blue badge in person. I googled them and other charities that are to do with brain injuries. This is where I found Headway. I wish you the best of luck if you have to attend a tribunal but as other people also suggested try CAB as well!

  • Hi.

    I'm very sorry to here about your trials & tribulations.

    Following my Brain Hemmorage in 1998 I was given the all clear in 1990/2000 following my Brain Surgery.

    This was great as I also returned to work full time (different job) and driving and much more.

    These were all told to my wife in Spain in 1998 "NO GOOD, NO GOOD"

    I was determined to show them all that I was & I'm still "ALIVE & DEFINATLY KICKING"

    Unfortunately in 2004/5 I started to get Stroke symptoms on my right hand side "GREAT"

    My original Stroke in 1998 took out my left hand side. Thus leaving me with "NO SIDES"

    In 2005 I was given Radiation (SRS) Treatment which "BLEW" my head off leaving me with more problems than before!!!!!

    I had to then go to Portsmouth for 3 months for some "Hyperbaric Oxygen Therapy" which worked straightaway but only lasted 12mts.

    My family thought I was messing around when I retuned for the weekends so much better than before.

    Mind you so did the couple at the B+B where I stayed Mon-Friday's.

    After 3 long years I found out that the SRS Treatment hadn't worked and that I needed further surgery!!


    This I had in 2009 & I was given the all clear again!!

    I have now spent 10yrs trying to get treatment for my "Chronic Pain"

    This from the onset I thought would be easy!!!

    I had initaly read somewhere that:

    Finding a doctor who would understand/treat my "Pain" will be very difficult!!!!

    I thought surely "NOT" they can put people on the moon so treating my Pain should be "EASY" My "G"" they was right "BIG STYLE"

    To date I have gone through 2 GP's, 4 Pain Consultants, 5 NHS Hospitals, 1 Private Hospital/Pain Consultant.

    I was told that the 1st Pain Consultant was apparently the "BEST" at the hospital.


    I said that I would'nt like to see the "Worse" one THEN!!

    I have now been refused by the NHS for:

    (DBS) Treatment & Funding" for my only hope off "Pain Control"



    Over the past few years I have been given every drug avalible for Chronic Pain with no joy to date so "Deep Brain Stimulation" is my only "Hope"

    I have had to take Early Retirement from work as I was unable to fore fill my role anymore.

    This was a godsend really as it was making me worse again!!

    I'm also unable to drive which again was a godsend as well.

    There is enough idiots on the road now so adding another one following a B/I isn't a good idea!!

    There is more important things to look after: yourself & Family & Freinds.

    We also had another child so she is/will always be my "Shining Light"

    I will fight always so it/they (NHS)won't beat me ever!!

    You need to keep strong/positive as things will get "BETTER" in the end.

    You now have us as your "New Family & Freinds" so keep Posted we will all help/Support you as much as we can!!! I hope this helps!!

    Sorry for the "Rant" but believe me it "Helps"


  • It all seems to happen at once! My theory is that when things seem so bad, they have to get better! Think you possibly were a bit euphoric after the TBI and at first everyone goes out of their ways to help , then a few years on people forget what you did actually go through. Talk to as many people you can about what is going on, its always better a fresh ear and advice. Is there a local free legal advice centre near you who could help you appeal to the DWP-it infuriates me how you are assessed in such a short time when they dont know anything about your life! Above all you have done brilliant and remind yourself how far you have come-if it was'nt for the bad times you wouldnt appreciate the good times so throw a few plates at the wall !!! x polly

  • hi,

    i am not sure on this , please check, but i think its the case that you have 1 month to say to the DWP, i am appealing your decision, if you want to appeal.

    i think its the case that 1st time round when DLA claimants are re-assessed for PIP that 30% dont get awarded PIP and have to appeal .

    the way that PIP is, it seems very specific in the way that the points can be awarded.

    so, although my disabilities are quite broad based, i have in some places specifically addressed the points system when applying for PIP.

    i cant 'promise' 'success' with the following guide that id recommend, but i 'think' that its going to help me.

    can you go to and register (top right corner) , this cost me about 20 quid.

    then type in search box 'members only guides'

    then scroll to members only guides in the menu on the left hand side

    then click on 'PIP' ---- A PIP Resources page should come up,

    click on ***** 'Guide to Claiming PIP' highlighted in blue and download.******

    then click on ***'Guide to PIP appeals', highlighted in blue and download******

    i am sorry that there is a lot going into the mix to make you feel down. as regards PIP , if i am awarded nothing so be it. i know its hard and i dont mean to preach but i am going to teach my boy value other things in life not money.

    my best to you

  • Hello Jeniberri.

    Like you my wall has been facing me for a while. An immediate good recovery gets difficult later I've found. It's all to do with people's expectations. They have no idea of the damage done to us and what effect that will wreak in us. And it WILL be major. I am finding that after 18months now. Our personality appears to change due to things that are wiped from our brain either permanently or temporarily so we don't react or come across as considerately or kindly as we did before. As we express our needs we appear selfish because our brain damage is not accepted... because we " recovered" didn't we? Why are we being peculiar, difficult, and selfish? A lot of my friends have cut contact and I am only beginning to realise its because I am no longer the Vicky all caring for them Wonder Woman I was! So I've let them down. It is very sad and hard for us because it is hidden damage and really not understood or even accepted by others at all. Particularly if we remain articulate. It goes against us because we can do more than gibber so we must be fine!! Sorry to rant. But I recognise your story Jenni. Can you ask your husband to research this disability (for that is what it is) and see if he can start to understand why you are so different. If he suddenly acquired a disability he would be "different" than before, with an awful lot to come to terms with too. Understanding from those around us is vital. Like you I don't have it yet but am just beginning to know I need to start to ask for those around me to try to see more than they WANT to see. I too have a tribune real to attend over my pension rights because I don't tell the DWP that my divorce had finalised due to having a brain aneurysm! Strange how DWP wasn't the first thing on my mind then heh? Life is tough and they make it tougher. But hang in there lovely and make a start with trying to see if you can get hubby to understand more, and any family you have too.

    Lotsa love xxx

  • Hi all

    Thank you for all your messages of support. I have managed to pull myself together a bit and, with the help of my mum, have managed to get some information together and write a letter explaining why I think the PIP decision is wrong. My Headway counsellor is putting together a report to send to PIP and ESA and she is going to help me apply for it (Vicky ESA is Employment Support Allowance). She is coming over on Friday to help with that.

    I have since found out that 2 other people have handed in their notice where I work, which makes me think it wasn't just the BI that was making things difficult. I'm still gutted because it really was my dream job and I was with them for 5 years, my final year project at university was inspired by my job and the plight of feral ponies. But on the flip side whilst I was in hospital and recovery my goal was to get back to my job, so I achieved that and managed it for just over a year. I accomplished a lot and am extremely proud of what I did, every day was a struggle mentally..... but I did it.

    I have been re-referred to clinical neuropsychology, the wait is long but now that I know I am on the waiting list I feel like I am being listened to. In the meantime I will continue seeing the Headway counsellor, who is fantastic.

    In regards to my partner (we're not married nor do we live together, been together 5 years), we went for a long walk on Sunday and he has called a couple of times to check i am ok. That has been enough for now, just knowing that he still cares. The past 2 years have been hideous for him too, his dad was being treated for cancer when I had my accident and he sadly passed away a year later (we were with him when he passed), he was his carer and left his job to look after him (and me for a while). He is now still unemployed and been turned down for a number of jobs. I just think its all too much for him.

    Soooooooooooooo I am feeling a tad better about leaving my job, I am going to apply for ESA and appeal the PIP decision. If I don't win then so be it, but, as with life in general I have to try.

    Thank you all again for your responses, we are each others beacons in the darkness of broken brains. xxxxxx

  • Hi Jennab. Hope it works out for you, like everyone else on here you deserve it, K

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