I feel horrible even asking this, because most of the time, I'm relatively functional.
Some of the time, though, I'm not, when the fatigue hits hard, I can't do anything, I don't trust myself to make a cup of tea, because I can't guarantee I won't scald myself, and getting dressed just seems like far too much effort. I don't want to bleat, or whine, because I know that my impairments are relatively insignificant most of the time, it's just that sometimes, my head decides to factory-reset itself, and I'll be stuck in the armchair, staring into space, because moving either hurts, makes me feel like the room is spinning, or I panic-cage myself, that I might fall over.
I've had to come home from work a few times, because I either don't trust myself to make high-level decisions when I'm 'foggy', or because I'm over-stimulated by the noise, the smells, the PEOPLE.
Is there any point me making a claim for PIP, given that I'm mostly-functional?
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try E.SA more flexiable and you are more likely to get it.P.IP is more complex.sounds like you are "flooding" maybe a tri[ to youre g,p would be a good idea,hope you feel better soon xxx
I would definitely see a doctor to get this checked out. But it does seem quite normal. I had a SAH in March and I have just started back at work and sometimes find it hard..... But you should write or log all experiences down so that the doctors can assess you.
I have done a video blog about recovery so that it can help others with their experiences. Please do watch as I talk about fatigue.
I think everyone is individual so shouldn't compare. You have been through something and people who haven't don't actually understand.
We are always told that we are lucky that we are here. But others don't understand that we have been through something that has affected us. X
Do you see a neuro psychologist? My husband has one we can phone when required for an appointment, approx every 18 months. We spoke to his at his last appointment as his difficulties are similar to yours, though he gets fatigued quite often, just being in a busy supermarket can exhaust time. They said this was totally to be expects and wrote him a great letter to go with his PIP application.
If you do decide to apply may I suggest that you get someone experienced to help. Headway, or a disability organisation perhaps. They are complicated forms and hubby would not have put in nearly as much detail as went on it. Someone experienced can ask you the right questions to get ALL the information required, though you may not like what they have written as it can focus on the difficulties that you skip over.
What is now usual for you is not what is usual for someone without a head injury.
Thank you- no, I don't have a neuro-psych, I don't have any sort of after-care, and my GPs keep patting me on the head (not literally, I'd probably bite them if they did), and telling me I'm doing fine.
I'm in a curious situation, in that I'm back working full-time, so I suppose it seems a bit odd thinking about applying for benefits, for me, it's more about the assessment/analysis than the actual payment, sort of knowing whether I'm 'disabled', if that makes any sense? My SAH was in February, and I'm having one of the other aneurysms they found at the same time coiled next spring, I keep getting the 'wait until after...' response when I speak to my doctors, I do appreciate their point that my brain won't be fully 'healed' for up to two years, but it's exceptionally wearing on me, second-guessing every ache, pain, and twinge.
I'm over-sensitive to noise, smells, certain types of light, and I'm incredibly irritable, work are being really understanding, but I don't know how long they will put up with me walking out of rooms because someone is slurping their tea, or making a noise that annoys me when they breathe. I'm next-to-impossible. It's hard to explain to 'other' people that when I say 'brain fatigue' I don't mean that I'm tired, and that 'putting my feet up, with a cup of tea' isn't going to help the pervasive fog that comes over me from time to time.
I'm rambling. I think that what I probably need to do is look at a referral to Occupational Health, or whatever they're called, the anxiety is feeding the irritability, and, although I'm not acting-out the impulsive or irrational behaviours, I am still having the impulses, and it's a constant game of being-my-own-Mum, and telling myself not to do stuff.
I would suggest that you strongly ask your dr for a referral to a neuro psychologist rather than occupational health. In our experience the neuro psych has been so much better than anyone from any other dept. They understand head injuries completely.
Re work colleagues, look at Differently Normal website, this wonderful lady does key ring cards that explain the sort of fog and fatigue you seem to experience. Hubby has found them really useful rather than trying to explain repeatedly.
You are wonderful trying your best to work full time, can work give you your own room to work it, or could you work from home sometimes?
They should give you some support under disability rules, they should make reasonable adjustment to help you continue working. Possibly support from the disability advisor at the local job centre could help ?
I think that's my waffly, rambly point, that I'm not 'classed as' disabled, so I'm in this weird limbo, where I look pretty much the same as I did 'before', just a stone and a half lighter. The nature of my job means I can't really work from home, and there aren't any one-person offices.
My discharge from the hospital was a mess, nobody signed me out as such, and I had to ask the receptionist to print my discharge notes, after nearly four hours of sitting there, waiting for someone to formally discharge me. I suppose I slipped through the net in terms of after-care, there was a referral to a local rehab centre, but the lovely lady there seemed more interested in me colour-coding timetables for household chores than anything else, and discharged me after two appointments.
I don't know what's 'normal' or 'typical', and I appreciate that everyone's progress is different, I understand my GP assuming I'm fine because I'm not presenting myself in floods of tears, or trying to eat his post-it-notes. That's part of the problem with me, I'm analytical, and can be quite detached (essential, in my job, which can be horrific at times.), so I come across as 'OK', when I know I'm not.
I'm approaching ten months post-surgery, and 80% of the time, I do manage pretty well, it's the other 20% that's the problem, and the unpredictable nature of the episodes of fatigue. I need to see the GP about something else next week, anyway, I will ask about referral, and, if he tells me I'm 'doing well, considering', I'll eat his post-its.
You don't need to be "classed as disabled" to get support. You have had a medical difficulty, which has left you with certain changes, no matter how minor. Therefore you are entitled to the appropriate support, with you being the person who decides what support you would like.
You have rights, and the professionals should have given you a proper discharge, etc.
Even just going through the PIP questions might help you specific difficulties you are having compared to how you were before. You can then decide if to take it forward, or not.
Either way it is your right to make your own choices. Good plan to ask your dr for a neuro psych referral, it could be really useful for you.
Best wishes, and don't forget you are doing well getting back to work already. Therefore any day when you can't quite manage it is to be expected.
Wow reading your message, sounds like I could of written this myself. A the brain fatigue is so hard for people to understand, when it's on full steam I can't even answer people, everything irritates me, no thoughts are in my head, just scrambled, and this makes me very very irritable..I do have others TBI issues which I now have had to stop working, from a job I loved doing. It's been a upward hill battle with Drs, hospital and still 9 months later waiting for neuro-psychologist and waiting for occupational health visit. Jumping hoops at the moment for disability payments, and non one really helps.. Like you say it's just living in constant limbo, as no expert knows what's truly wrong as they just say something you have to live with..
Good luck getting yourself sorted, and don't push yourself to hard, we forget to take it easy with our wonky brains..xx
I'm my own worst enemy, I know the massive detrimental impact that 'coping' is having on every area of my life, but I still feel guilty about asking for support, when I'm clearly doing much better than a lot of people.
Swings and roundabouts, which, incidentally, is what my head feels like it is on this morning. X
Personally, I wouldn't think so. I don't even consider that I would qualify for PIP, I can make a cup of tea and a meal on occasion even go out on the bus when I'm able, but I can't work or drive. I rely on my husband to shop and take me hither and thither, some days I can't leave the house.
But if you don't ask you don't get, they can only turn you down.
I know, it seems odd, me looking at disability benefit, when I'm working full-time, and manage to put my shoes on the right feet first time most days. The whole thing is having a pervasive impact every day, though, and my GPs constantly telling me that I'm fine, when I know I'm not is really grating on me.
I'll send for the forms, I'll fill them in, I'll see what happens.
I know what you mean, I'm retired now, but I had intended working to 65, I went through all the ESA route, it's not easy, but you must write how you are at your worst, not easy to see written down, we don't need extra money but I suppose I ought to apply to. They didn't dispute my ESA claim but it only has a limited run time after that it's PIP and I was only 2 months short of my state pension so I didn't bother.
But like you there are days I can't function properly without assistance, if I was on my own I'd need help.
I did a PIP online see if you would qualify, and I would, not on the day to day aspect but I can't travel anywhere new without assistance, I'd get lost, in fact I wouldn't even try, the thought of trying scares the hell out of me. Not the old me at all, I'd have gone anywhere or done anything on my own.
So you do it, I may even request the forms myself, like I said, they can only say no and we may be surprised xx
That's the crux of it, Janet, that 'me-at-my-worst' can't really do anything. Between the vertigo, the 'think-limp', that awful feeling like wading through freezing water, and the anxiety about 'what if this is one of the other aneurysms flaring?', I'm essentially useless for at least a couple of hours, sometimes the whole day.
Most of the time, I am functional, but when the fatigue/fog hits, all I can do is sit still, and wait it out. It always passes.
Just been reading through this thread and couldn't help but reading your post about being discharged from hospital was a bit messy. Mine was pretty straight forward but at no point when I left did my consultant and of the nurses or anyone warn me of what I might go through over the next 3 months. I couldn't drive for 10 weeks but the way I was thinking was horrible absolutely horrible. I went back to work to soon and by today was sleeping in the corner, luckily the project we were finishing had only me there, night night I said at 12. It was a long struggle to get where I am now and even worse for my family and its still no walk in the park and I think I'm one of the lucky ones. I didn't want help and wanted to do it all on my own but iv learnt form other problems that I can't and iv been taught never be afraid to ask for help. Trouble is we don't want to ask as thats our default setting.
If you feel that you need help put it in motion now as it could take months and months for you to be processed in the system. As you said your brain factory resets itself and you need help with this don't be afraid to ask. Im learning every day what version 3 is doing and its incredible really as the main source of help that iv had is from you guys on here. Have a fantastic Sunday evening and again get the ball rolling. XX N
We both did the straight-back-to-work thing, and we're both fiercely resilient. I suppose, in a way, I'm trying to cover my own back, work-wise, to validate that there is something wrong with me, even though I appear functional most of the time, I've only had to knock off early a few times, but questions will be asked if I keep doing it.
Yes, my discharge from hospital was awful, nobody spoke to me about what to expect, or what was going to happen next, other than that I would get a letter from the Consultant for a review in due course. I was insanely angry at everybody, because I thought that the doctors had been speaking to the husband, instead of me, but it turned out he'd just been Googling stuff! I did write a complaint letter about the lack of communication, and how the whole thing was very done-to, rather than done-with, and the response made some sort of sense.
I don't know what I expect to get from the PIP application, and whether it will have any bearing on if I tick the 'disabled' box on forms in future, but, yet again, I feel the need to DO something, because I'm not-right all of the time. Might flick my local Headway branch an email...
It sounds like ESA may be a better fit for your situation.
I have managed not to claim anything for 3 years ( son has helped with bills ) but in my present state I do not know if I will regain my former physical ability and be able to continue my 9 hrs cleaning job ( currently being investigated for MS ) .So it may be that I will be looking into some financial help myself, in the future . No shame in that - we have given our all and tried our best !
I would have a word with Occi Health too - am planning on this myself when I eventually get the appointment !
Take care and stay off the post its - they are empty calories ! : ))
I know I pushed it, going back to work phased-in, and then full-time.
I'm see-sawing again, part of me wants a bit of paper or something that says I have a recognised disability, and part of me just wants to get on with it, and stop dithering. We're in different situations, work, and health-wise, I'm at work for around 45 hours a week, and, apart from the CREATURE at the next desk who annoys me by slurping her tea, and talking while she's eating (she's always eating), I genuinely do thrive there. I know I'll never be 'the same' as I was pre-BI, and I'm careful to take breaks, and STOP if I think I'm getting foggy, because a lot of the decisions I have to make are pretty important ones...
I'm going round in circles, I'll ask my GP next week for referrals to Occ Health, and Neuro Psych, and I'll phone for the PIP claim forms, the ESA seems more about 'getting back into work' from what I've read?
Just a little clarity. Ask the doc for a referral to Occupational Therapy.
The workplace process is Occupational Health and a very different ball game.
While you are waiting you could try the RNIB and Deaf Society online for bits and pieces to help.
You can get tinted sunglasses or over glasses from the RNIB and I'm almost sure you can get something like!ke a flashing/vibrating pager from the deaf society and that would allow you to use noise cancelling headphones.
I very much recommend the use of headphones. I use my 'earbud' type headphones at home just to block out the sound of life in general......I have them plugged into my iPad so the family probably think I'm listening to something lol. It just acts as a barrier to sounds which irritate - and sometimes it helps remove the whole world
Ooh eck G, 'relatively functional'? Are you really because you don't sound it. I mean you aren't paraplegic or anything - but I have a feeling if you were you would have one of those eye controlled computer based systems and whizz around telling everyone that you were absolutely fine thanks
Relative is not really the point here, is it? It is all entirely subjective, can you or can't you. And you have days - 1in5 where you say you simply can't. Don't want to depress you but that is 1in5 when you are not functioning
Going for PIP or ESA is a bit of a nightmare tbh. The forms themselves are totally exhausting, the interviews even more so. But it does fulfil that function of giving you a 'yes you are disabled' style recognition....if you get it, and of course a lot of their decisions are perverse.
With PIP the changes to the descriptors now require that you are able to do something repeatedly, reliably and safely. I can do most things even with my 😵 brain and wonky walk, but there is very little I can do repeatedly, reliably and safely these days, especially if I am expected to do any walking ahead of doing it. That is really the best chance those of us with chronic but fluctuating conditions can hope for assessment wise. So far that has been OK for me - mind you I have been through the spectrum of totally bedridden - totally well- housebound but upright -ok but with diminished capacity in a clearly documented way these last few years, so they have proof I am not reliable.
If you think you can stomach the process,then go for it. Don't badge yourself as' not really disabled enough' - believe me, those assessors will be more than keen to do that for you......
Ah, the image won't load on this silly laptop, so I'll take your word for it. I'm also back at work full time, and I KNOW I pushed it, back part-time six weeks after the surgery. (only 'missed' four weeks of work, due to school holidays, and such...)
I'm also probably 'high functioning' most of the time, and there's the probability that this admission that I'm not coping all that well might just be one of my seasonal dips, arthritis, Raynaud's, and a host of other complaints that don't like winter tend to make me a bit 'off' in general. I'm relatively certain that I'm not depressed, because, when I am, I have no urge to do anything about anything, and this is me contemplating doing 'something', however misguided.
I've downloaded some guidance on the PIP categories, and I'm ticking an awful lot of boxes, even on 'good' days- 'bad' days, they'd have to stretch the scale, because I really can't do anything, I don't move, I don't eat, I don't wash, or dress, because between the vertigo, and the pain, it's just not worth the effort.
Does sound like you came back early and fast! I started back 6 weeks after my fractured skull/subdural hematomars, on 4hrs a week over two days, felt like a 70hr week! Slowly ramping up to full time by 7 months.
Likewise on a good day I can cope well, but on a poor day I can struggle and if do push though it, means I end up having another bad day next day and so on etc!
I'm full-time now, and have been since about May last year. (Surgery was end of February.) I had to get back quickly, because work is where I exist, and, because I knew people would be cocking up stuff that I had set rolling, without my supervision.
Looking, now, at the possibility of later starts a couple of mornings a week, but I know I won't like it, and I know I'll have to contend with the anxiety that people are cocking my protocols up, if I'm not there to bark at them. I am going to state my case, to my manager, that I'm effectively carrying several colleagues, three of whom are new, and don't know 'what happened to me', and one of whom wouldn't be able to spell subarachnoid haemorrhage, if you gave her 17 attempts, and the internet. I do what I do exceptionally well, but I'm frustrated at being pulled out to do things that other people could/should be doing...
I was irritable before, but now I have the I-had-brain-surgery and I-have-brain-damage anxiety on top of that, I need to remain level, but it's hard work.
It comes and goes, I genuinely thought I was going to faint in staff briefing this morning, and had to refrain from sitting on the floor, because then the flappy-staff would call an ambulance...
My biggest problem, I acknowledge, is the fact that I work-around so much of this. If I feel faint, or the vertigo starts up, I try to sit, or lie down, so there's less of a drop if I do keel over (I'm tall for a girl.)
The working-around is wearing me out, I've had to leave my office probably four times today, because the alternative would have been SCREAMING at the lump at the next desk, because the noise of her constantly-eating makes me feel sick. There's a category on the PIP questions that goes something along the lines of "Unable to communicate... would place self or others at risk of harm..." that's me, in a nutshell, the irritability is SO bad that I'm always a hair's breadth away from yelling "Do you HAVE TO do that?", or worse, at people. I'm over-sensitive to noise, to smells, to certain types of light, I'm constantly irritable, and the anxiety peaks and troughs.
I haven't done anything hideous, or stupid, and my office-mates are now used to me coming in, releasing a stream of expletives, and then telling myself to 'breathe'. It's not-OK.
Gaia, this sounds really awful, like you are putting yourself through hell everyday.
Adaptation and working round problems, be it physical or cognitive IS exhausting ( I think you have some of both, if I remember correctly ) - I've been doing it for 2 1/2 years plus ! Fatigue will magnify symptoms.
Suggestions - would it be helpful if your desk could be moved to a quieter area ?
If you were able to get formal recognition of your condition, would this allow for better adjustments at work ?
Additional money could allow for a reduction in hours - would that be of benefit to you ,do you think ?
Lastly, have you had your vertigo checked out ? There may be something available to help with that. x
I am looking at the PIP-process as a way of evidencing to work that, while I look pretty much the same as I did (albeit about 2 stones lighter), I'm not mucking about when I have to leave a room, because someone's eating a satsuma...
There aren't any one-person offices, I've been asking for years, because the majority of my work is complex-confidential, and I can't have other staff wandering in, asking for staples, when I'm trying to evidence to an agency why a family needs IMMEDIATE support...
I had vertigo-ish problems years ago, which were sort-of attributed to my migraines, and the course of treatment then was Serc-8, I can't remember the proper chemical name for it, but one of the side-effects is appetite depressant, I barely remember to eat as it is, which, yes, does compound the fatigue..
I'm not trying to be negative, I'm just stuck in a hole with all these horrible symptoms, and my GP's, who, obviously, are not neuro-specialists, just keep patting me on the head, and telling me I'm doing fine. I'm not, I'm constantly strained by everything I'm consciously working-around, and that's what I'll evidence in the PIP-claim, that it's pervasive, and prevalent, and that I can't maintain it without help/adjustment. Looking at the potential that if I am awarded PIP, I can reduce my working hours, work is my EVERYTHING, it's the only place I make any change to anything, and I'm bloody good at it, it's just hard.
I'm a cyclic thing, I peak and trough, with cycles of 'I CAN do this!', and 'Why is EVERYTHING so difficult!'
It's draining. As I've alluded to before, the marriage is dead, and my new-found additional irritability means that I'm spending hours on the bed, pretending to read, because EVERYTHING he does annoys me. I called the dog a VERY bad name, yesterday evening, because it knocked something over, and, when my son has his friend over at weekends, I end up 'hiding' from him, too, so I don't call HIM rude names.
I'd say I'm just about holding it together at work, but that is 'with adaptations', the adaptations being that people know I'll descend on their office "Because she's slurping her tea again.", or flop myself down, and let out a barrage of vulgarities because someone's done something to cock up one of my processes- it's not ideal.
When I'm functional, I'm bloody fantastic at what I do, there's nobody in the organisation that can do things as well as me-on-a-good-day, but, when I'm having a bad day, I'm worse than useless.
I'm at the GP next Tuesday, and will ask about the irritability, the anxiety, and referrals to neuro-psych and Occupational Health. If I'm having a good day, and can get my words out- if not, I'll no doubt come out with a pat on the head, and a carrier bag full of Prozac. x
Expletives are my private luxury, especially with the latest probs !
Yes I have snapped at my dog on occasion and felt instantly guilty and appauled with myself afterwards. Noise level is difficult in our house as partner was born deaf in one ear and has lost hearing aid again ( 2nd time ! ) so TV and sport on radio is unbearable and I have to seek refuge/put earphones on with music !
His forgetfulness is likewise a challenge - can't remember to shut door when leaving lately.
I simply get too tired to keep policing everything and following round after him.
My own nerves get on my nerves ( weird sensations ). Currently trying to tune out buzzing in chest and plucky stomach muscle ( feels like someone playing the cello in there ! )
I start out on dogwalk, doing quite well and stupidly thinking I'll be back at work in a day or two then come home, rest/sleep and get up again to find my legs are wrecked. Reality sucks.
I am known for my upbeat, problem solving, helping others qualities - it is hard to help others when you are struggling so much yourself without help. I know where you're coming from.
Oh dear - me too - I'm usually the problem solver/take charger in our house and circle of friends ......... How the mighty fall I feel so useless now .......and soooo relate to your funny internal noises driving you mad ......whoo-hoo I'm not alone. thanks for sharing
I have just read your other posts - I'm afraid I wasn't too with it over Christmas ( recent relapse ) and missed your joining the forum, so a belated welcome : )
In your previous answers I noted you were due back at work soon, has this happened yet and if so, how is it going for you ?
Hi thanks for your reply, I'm afraid I'm not back at work. I believed in all the 'you'll soon be back at work' encouragement I had straight after the accident & it was really helpful & kept me going up till Christmas but the reality has now sunk in. I need to readjust my expectations x
Unfortunately, some things just can't be rushed, no matter how positive we are, how much physio we put in or how much 'brain training' we do. Not to say that these things are not important additions but time in itself has a part to play in healing.
I'm a glass half full person, at times a bit of an ostrich, happy to bury my head in any available sandbucket rather than accept the current facts !
However, as I have been through the healing process before and arrived at a reasonable functional compromise, I am heartened by the ability of the brain to reorganise itself into a better working system given enough stimulation and time : ) x
gaia i suffer all of those, the only difference is i have no concept of though or the other persons feelings.
im unable to think ......youre annoying my tongue is my thoughts.
i too used to suffer vertigo type feelings, i was given a warning...id go really hot so i knew to sit down and away we d go.
id also have severe neausia and diarrhoea .
now i get no warnimg wham thats it !!!
Gps referring me to the hospital to have one of those 7 day heart things and he ll put on the letter that i can be rude and aggressive.
now to your PiP. do you go to appointments on your own ? i no good if yes get int the habit of taking someone with you to appointments ( the gp and psychiatrist wont see me without my wife any way ).
before you fill in your PIP form have a look at benefits on this forum.......theres a complete pip form showing how you get your points. goodluck
My digestive system misbehaves, too, there's a whole range of food I avoid, because it 'goes straight through me', to be polite. I was always crap at eating, even before the BI, I had to set alarms on my phone to remind me to eat, because I don't routinely feel hungry. I'm even worse now, when I KNOW I should be more careful with my nutritional intake, to ensure I'm not low-blood-sugar irritable/fatigued... That's my paranoid/crazy head 'grabbing' 'during a bowel movement' from some report I read ages ago on times brain aneurysms are likely to rupture. The fact that I can say to my doctor "I know it's irrational, but I'm scared to poo." isn't doing me any favours, the calm-reasonable tone of me, when I'm under control is enormously compelling.
I've been going to appointments on my own recently, I feel very 'caged' in the car, with the husband, and his constant 1980s-music-on-loud, his talking-about-nothing, and his STINKY aftershave. I know I won't be eligible for any of the 'mobility' element of PIP, because, by and large, given enough prep/planning time, I can get to where I need to go- it's not always pretty, but I haven't bitten any bus-drivers, or kicked any pigeons yet.
I've pretty much memorised the sections that will be on the PIP form I still haven't phoned for, and I know that, on-a-bad-day I'm hitting the high-points scores, and on-an-average-day I'm mid-range across most of the categories.
The vertigo is the tail-end of how it was after my discharge from hospital, manageable with some adaptations, the last MRI didn't show anything of concern (the poor lad sat me down, and asked if I knew when my next appointment would be- sweetheart, I know about the other two aneurysms in there, don't panic.) Historically, I've always been prone to throat and ear infections, so 'dealing with' the horrible whoopsy-waves of not-falling-over, and whooshy-ear-noises is do-able...
Catch-22, I know I'm not OK, but I'm so used to pretending that I am...
wife mother what right do you have to be ill......the home wouldnt function without you,,,,ok thats the poor attempt at a joke over.
i cannot do noise.....to ensure i have a good nights sleep i have a pair of soft rubber ear plugs i wear, if my ears werent so big id look like SHREK!!!!
thats the idea of PIPquestions,,,,,,what you are like , can or cant do on your worse days,,,,,so thats what you put on the form gaia.
I'm very bad with unexpected noise, and background noise. I live with a musician, who has tinnitus, and some industrial deafness, 'quiet' is distressing to him, but it's me that ends up wearing earphones, or leaving the room. Work have 'forgotten' about my limitations again today, and asked me to escort visitors, and about 30 primary-school children to the toilets... primary school children aren't quiet, and I'm NOT a toilet attendant, I did have a few problems, especially when I was put in the vicinity of a Shetland Pony, but that's not work's fault, they don't ALL know that horses freak me out.
Whinge, whinge, whinge, I'm a proper old humbug, aren't I?
just call me grinch ive even got my bah humbug hat for xmas day !!!
you need to keep reinforcing your disabilities, which they are , to your boss and colleagues or buy a t shirt or sweatshirt which reads .......disability isnt always visible
Id isn't know there were two types and I have this problem. The treatment I had didn't work......I've been told it will improve with time (a few years time) because the chrysalis can apparently dissolve themselves - have you heard that? Thank you
hi gaia i had a tbi 2 years ago that was diagnosed in Septemberlast year. as soon as i had the diagnosis i applied for pip. neither my huband or i have been able to work since the accident. he works offshore and did go away for a month just as i was in the process of diagnosis and he had to come home as an emergency as i was unable to cope on my own. your symptomssound exactlylike mine, when i filled in the forms and had the interviewi got 0 points. but my husband wrote a letter telling them my true condition as did my gp. he also stated that i would be supported in my review... or whatever the word is... (i also have memoryproblems i never had before), by the local headway lawyers. i now recieve the highest level of pip . if you contact your local headway group they will have local lawyers companies which are headway approved and they will have lawyers which deal with help with the benefits system.
the others are right itvis about what you are no longer able to do regularlyand safely.
i wish you luck in your application.
thomsons solicitors attended the headway conference and i am sure they have a list of the pip questions and the descriptors you need to meet the criteria.
i now have to sign off as this has exhaustedme... i am not allowed to spend longer than half an hour on the computer x
I'm really struggling a lot of the time, and deeply conscious that I keep letting work down, by having to withdraw, because I know that, sometimes, I'm just not competent to make major decisions. I also know that the irritability is a massive factor, I was tetchy before, now, I'm something of a monster, EVERYTHING annoys me, and the battle not to snap at folk, just for being themselves, is exceptionally draining. The anxiety is pervasive, every single ache, pain, and twinge is over-analysed, that's my initial coping mechanism of "Is this OK?" gone mad, even though I now know what level of vertigo/nausea/fatigue/headache/digestive difficulty is 'baseline' for me. (I'm not going to say 'normal', I wasn't really 'normal' before.)
I'm factoring-around, in my head, whether being awarded PIP would enable me to cut to part-time at work, or whether the powers-that-be in the benefits agency, or whatever we're calling them this week, would just assume that cutting my hours would guarantee to mitigate my symptoms to a manageable level, and therefore invalidate my claim. (Or, is that my old pal, You-can't-do-THAT-paranoia talking?)
Some of the time, I'm exceptionally, productively, lucid, but, sometimes, I'm 'stuck' in the armchair. I have panic attacks, the first one at-work happened last week, as we had an urgent first-aid call out, to a potentially life-threatening condition in one of the children. The panic wasn't related to the call-out, I'd safe-exited, to bring myself under control before the call-out, and I know that my colleagues-who-know don't expect me to be WonderWoman, but part of me does.
We'll see, I'll try to find a quiet window at work to phone for the claim pack today, and take it from there.
Pip is not an income related benefit... It is there to assist you to have a life closer to before ie you can use the funds to assist u a work or in getting to work. Check with headway benefits lawyer and your occupational health at work to work together to assist you... best of luck
I'm always crap at this time of the year, and, this year, I have my lurky little brain-guests to keep me company. It's half past seven, I've been up since 4am again, which will no doubt mean I'm dead-on-my-feet by 8pm, as per usual. Jingle sod-off.
I'm at the GP's this morning, and I have to be VERY careful not to grab his jumper, and demand Prozac, because Prozac makes me foggy, and then I won't be able to differentiate between brain-fog, and Prozac-fog, which could, unlikely-potentially, lead to me not-noticing the signs of one of the remaining aneurysms enlarging. Deck the halls with boughs of anxiety.
I don't want Prozac, I'm not depressed, I'm just miserable, I'm always miserable at this time of year, that's what happens when you're a 'me'.
I'm not going to bang on about other-people's-expectations, that I should be thankful I'm functional, and 'join in' with the tinsel-stink malarkey, with the TV on full blast, nobody watching it, and pretty much everything I eat making a rapid and explosive transit through my digestive tract- I'm not just wearing 3 jumpers because I'm cold, it's to cover-up the fact that I'm bordering on emaciated. We don't want some figgy pudding, thank you.
Game-face on, I'm going to go into work for an hour, and sort out something that I asked TWO fully functional colleagues to do before we broke for Christmas, and neither of them did it. Then I'm going to go to the doctor, and ask for a referral to neuro-psychology. He'll tell me I ought to wait until after the next round of surgery, because he'll have half-read my notes, and won't realise that only one of the aneurysms is operable, so the coiling (With added 'risk of stroke'!) will only reduce part of the pervasive, draining, what-if... I won't poke him in the eye, or eat his post-it-notes, because they are IRRATIONAL IMPULSES, which I've spent the best part of the last year battling.
I'm exhausted, emotionally drained from the constant effort of trying to ensure that my not-their-fault brain injury doesn't have a negative impact on other people. I'm physically wrecked, I have virtually no muscle-tone left, so, because I'm physically weaker, I tire more easily, which feeds straight back into the anxiety-loop of 'is this normal?'
I still haven't phoned for the PIP-claim-forms, and I'm over-ruminating on the number of times a week I get out of the bath with the conditioner still in my hair, throw a massive, sweary-tantrum at my bra, or make another cup of tea, forget I've made it, and then wonder what I'm doing in the bedroom, with a teaspoon.
After going into work, and going to try to convince the doctor that I DO need help, I'm going into town, for Christmas-crap for the boy... It will technically be his last Christmas before Uni, and adult life, and all that jazz....
After nearly 8 years after my husband sustained a Traumatic Brain Injury I have convinced my husband to apply for a PIP.
Before his accident he had worked as a Paramedic for nearly 30 years but after accident he returned to work 6 months later(too early) although his knowledge had not been affected he said things to offend which eventually lost him his job. His colleagues said that his personality had totally changed which yes it had.
After losing his job and suffering from depression he applied for DLA and was rejected, It went to a panel as we appealed it and were told that although they sympathised with us my husband didn't fit the criteria ie he could dress feed and walk without any help,
My husbands has cognitive problems he says things that may offend, mood swings, lack of motivation and facial recognition problems. Very sensitive to noise and has lost his sense of smell. He has lost many jobs because of his problems.
We have received the form which is like a book but I have got someone who is going to come and help us fill the form in. He is a Care Support Worker from the Princess Royal Trust Centre.
Fingers crossed he will fit the criteria as his cognitive problems are affecting his life.
I am in Scotland so it comes under Carers Trust Scotland, I am sure there will be one wherever you are. You could also speak to your Local Social Work Dept who could help you to fill it in also.
All the best with your claim- I do myself no favours, because, when I'm well, I present as intelligent and articulate, and when I'm not-well, nobody sees it, because I confine myself. Having spent years working with adolescents with emotional issues, I'm used to teaching others how to recognise and divert an irrational first-impulse... wonder if work will pay me an allowance for the boots I'm wearing out with constantly walking-away-from idiots?
Thank you. My husband is the same his IQ not affected and has so much to give his knowledge in his Paramedic Role is first class he passes exams with full marks or just under but just cant hold down a job. He says things to offend without realising it.
You could always ask for an allowance for that they can only say no..haha
Thank you for sharing your story, some of which enabled me to laugh out loud at things I've done which are similar to yours. Putting the washing tabs in the fridge and then not doing the washing because I thought they'd been left at the supermarket. I've put cups of tea in my wardrobe in the shelf and then wondered where I'd left them.......getting very distressed because I don't trust myself to remember if I really had one in the first place. Crossing the road.......looking both ways.....buuuuuutttttt!!!! Can't leave the footpath cos I'm not sure if the road is really clear or if I'm imagining what it often looks like with no cars coming. Arranging to meet hubby and then waiting in the wrong place. Screens........15 - 20mins Max and then I pull my hoodie up and just leister to the rest of the movie without watching. Expletives - let's not go there, it's definitely improving. Saying inappropriate things.......yes .....now that's my new skill and I'll give myself an A star. Went into the loos in M&S and there was a tremendously obnoxious smell (smells, sounds and lights are simply abominable sometimes). Anyway - needs must, so holding my breath I finally found the least smelly cubicle, but before I could stop myself I heard my own voice say (very loudly) "It STINKS in here". Followed by a few titters from other customers. Always being a person who likes to laugh, I then started laughing at myself until I could barely breathe and the tears were rolling down my face. I'm talking mild hysterics here.....weeping with laughter. I was exahausted by the whole episode, but decided to stay in the cubicle until I couldn't hear any sounds outside so that I could leave with a small amount of dignity. All the while, hubby is waiting outside starting to worry whether I've gotten locked in or fainted or something. Oh my life.....What can you do? I also somehow started down the road of 'be a good patient and say you're fine' while in hospital, adapting a 'can do' attitude and never making a fuss when a stream of 'bank' staff got my medication wrong. Even on the tortuous and horrendous journey from the city hospital neuro unit back to the county hospital nearer home, when no one had sorted out any pain relief and I was sent via patient transport in a mini bus......well the details of the story sound too far fetched to print here - people wouldn't believe it, and then the second hospital misread the admission notes and failed to give me anti seizure meds.......yes the sorry tale goes on. Well I just wanted to let you know you're not alone by any stretch.......and to say please do go for it with assistance. To my cost I've found that there are no brownie points for putting up with an unimaginable situation. There are no gold stars for putting up with pain and being tolerant and trying to smile all the time and telling people you're fine because you don't want to be a bother. You sound very like me Good luck with getting sorted out and I wish you all the very best x
Replying to myself- is that the same as 'talking to yourself'? I applied, and was rejected. I appealed, and that was rejected, too. To be perfectly honest, I don't think anyone read the further evidence in the appeal, because the second rejection letter was essentially a regurgitation of the first, I wonder what the pay-rates are at ATOS, because I'm fairly certain I could spend all day typing 'we acknowledge that you have some difficulties'. I couldn't.
Neuro-psych has discharged me, probably because I'm profoundly unsettling as a person, but functionally so, work is undergoing some REALLY unpleasant changes, and I just have to accept that, that they're not kicking me to the kerb BECAUSE I have brain damage. If I bleat and whine about the brain damage, they'll see that as an opportunity to challenge my competence, so I have to play their game. Gods, that sounds paranoid.
The vertigo is hideous this morning, and the disturbance to my sleep-cycle is starting to have a massive impact, but, because I can mostly contain the impact of that to myself, other than being 'unavailable', very few people notice. No real idea what I'm rambling on about, I just need to do 'something', because I'm awake, and have been since half past two, I imagine that the office will be somewhat 'strained' by mid-afternoon.
I've had the second round of surgery. (Which, I suppose, is actually the third, given that the initial draining and coiling were two separate procedures, I just tend to amalgamate them into one, during the 'missing' period of my life.) I'm back to see the consultant next week, and, if he tells me what the procedure was, it's going to be difficult not to poke him in the eye and eat his post-it-notes. I was there, it's my brain, I know what they did to it. Another cycle of change-acceptance. I'm always crap during May, I tend to crash out really badly at the end of the month, it's a historical association, and, as much as I know I need to stop letting it happen, I can feel it creeping up on me. This year, even more so than last year, I need to shield myself from myself, accept the things I cannot change etc.
I've changed some of the things I can change, (bloody hate that new light-fitting, though, it's differently-horrible to the old one.) and I need to continue making these small changes, tweaking the aspects that I can, and letting go of the issues that I can't have any discernible impact on. There you go, another few paragraphs of psycho-babble, I'll get through this month, and the one after it, and all the ones after that, because it's what I do, with or without PIP.
A general rule for PIP is that your need has to be present for most of the time, although if there is a potential risk to you or others changes this basic question. Having said that it's far from predictable if someone will or won't qualify.
So I'd advise you to claim and seek help with the form completion, some CABs and Welfare Benefit services may be able to help along with some local Headway groups. The criteria for qualification are complex and the form can confuse many on what information to provide.
Thank you, sealiphone I'm currently on 'round two', the original application was declined, then the Mandatory Reconsideration was declined, and I didn't have the physical or emotional energy to take it to tribunal.
I had even more deficits after my second round of surgery in March 2016, and did myself absolutely no favours by trying to 'plough on through', and do everything I did before the haemorrhage. Mistakes were made, which did place others at risk of significant harm, and I was essentially trying to 'go through the motions', placing myself at risk of harm.
My visual issues are worse since the second surgery, as are my balance and co-ordination, the fatigue is a daily occurrence, so my risk-assessment is that I'm not safe to work full-time any more, I'm worse than useless in the evenings. I'd evidenced all of that on the HORRIBLE forms, but, yet again, the assessor cherry-picked the things that I 'could' do, or, in some cases, extrapolated that because I could X 'it is reasonable to assume she could' Y. Absolutely rotten system, we're 'guilty until proven innocent'. I wrote additional evidence for the Mandatory Reconsideration, explaining how my lucidity and cognition are not always as sharp as they were during the assessment. The MR was also zero-points declined.
I'm now awaiting a tribunal date, and have a 'welfare rights advocate', although I've never met him. I've annotated the 300+ pages of 'evidence' that DWP/ATOS will be presenting to tribunal, detailing which bits are wrong, and which bits are assumptions made by the 'decision maker' or the assessor. (The assessor recorded results of tests she didn't undertake, and neglected to record the massive spasm that meant I had to pause and re-set myself to continue one of the activities. She also recorded 'able to stand on either leg', when I'd had to stop because I was unsteady when I tried to stand on my left leg.)
I'm cross about all of this, that the NHS discharged me with no care-plan or risk assessment, that I tried to go back to work, and made myself more ill, that the first application was declined, and I didn't fight it... Most of all I'm angry at myself, for thinking I'd get 'better', if I just tried hard enough. I pushed too hard, I placed people at risk, and I came very close to breaking point myself.
The PIP system is awful, if you'd suggested two years ago, when I wrote the original post, that I should 'ask for help', I would have poked you in the eye, because I was still in the 'denial' stage. (Part of my job was writing complex care plans, and risk assessments, I thought I was good at evidence-based paperwork...) Now, I'm physically and cognitively worse than I was at the first assessment, and the assessor zero-pointed me on every single category. I might not be 'awarded' PIP at the tribunal, but I need someone who isn't DWP or ATOS to take note of how unfit-for-purpose the processes and assessments are. Too many people give up, and accept the decline-decision, I did in 2016. I won't this time.
70% of PIP appeal are won at tribunal, so the involvement of an advocate is good news.
Like any Court in England they consider the evidence, so you raising questions about the veracity of the assessment is a good start. You mention risk and this is very relevant, I recommend you make a list of any incidents and problems you have, as this can be presented as evidence, either on the day or preferably in advance of the hearing, ideally your adviser will be able to help with all of this.
It's all ready to go, I just need the date for the tribunal. I have 8 double-sided pages of 'annotations' to the DWP/ATOS evidence, and a 25-page 'Impact Statement' of the Physical/Intellectual/Emotional/Social issues I have, broken down into the 'issue', the 'impact/risk', and the 'adaptations' I have to make on a daily basis, to perform the descriptor-activities 'repeatedly, reliably, or within a reasonable time-frame'.
That's what's making me so angry, that I never stated I 'could not' perform any of the descriptors, I stated I had difficulties, but all of the decision-maker responses were 'You said that you had difficulties with... I have decided that you can...' I can, but at what cost? A mile in my shoes, decision-maker...
(That's my lucidity deciding it's time for bed, and getting ranty, every single day, between 3pm and 7pm, I'll just start getting irrationally angry at everything, managed a long shift today, without thinking of saying words that Grandma wouldn't like.)
The "You said that you had difficulties with... I have decided that you can...", is a pro forma response and is the norm in a Mandatory Reconsideration decision, so the Tribunal won't be impressed by the wording.
Your anger is not irrational, what's irrational is the approach to a Mandatory Reconsideration request.
I'll be going in fully prepared. It irks me that this system is so weighted towards the physical tests. Some of my difficulties are physical, and I've implemented strategies to work around them, but they take cognitive processing, and mine is impaired. I no longer have a 'full' day's work in me, my brain has done a full day's work by lunch-time, and, by dinner-time, I'm not firing on all cylinders. That was evidenced in the first application, and I didn't have the emotional processing capacity to take it to tribunal at the time. Classic 'Cassandra', I'd predicted that my deficits would cause issues, they did.
I was phenomenal 'before', and I can still drag that to the surface now, just not for 40 hours a week, not safely. That's my gripe, I'm not asking for the moon on a stick, or to be 'kept' by the state, I'm asking for a basic entitlement to re-join the work-force part-time, I hate being unemployed, I want to be productive again, but I can't safely do it 'full time.' I can't pay my bills on a minimum wage part-time job, and, after a year out of work, I'm not going to be considered for anything on a similar level to my last job.
You're feeling are entirely understandable and I encounter them everyday in my work, the disabled have been stigmatised and made to feel ashamed but shame on the Government.
It's so good to see others like me who are functioning, well kind of.
It took me 8 years to get to the point where I could work an hour a day. I slowly increased my hours to 25 hours.
I am being investigated at work for the amount of time I have had off work being ill and going to appointments.
Yes, I am at home again. I had a fall and am in a lot of pain and there is no way I can manage.
I am exhausted. I just got my pip forms and battled thru that stupid phone call. It was an awful experience.
I work as a support assistant in a primary school.
I have had about 3 hours sleep due to pain and now I'm suffering the effects of lack of sleep mixed with the effects of the medications.
My main problem is memory and word finding and being blunt and time. I have no sense of time.
I'm dreading the forms arriving. I helped fill in my sons forms and hd ended up with nil points. He has dyspraxia and anxiety and hypotonia. He also has similar difficulties to me. He got no points.
He went from middle rate mobility and top rate care to nil and I was too exhausted to do anything about it.
Like many of you I have not seen my brain injury consultant for years, I have not seen neuro psych for years. I have open appointments for all of my other ologies.
So down and fed up right now, brings back so many bad feelings of uselessness, it couldn't come at a worse time. I had brain injury workers who used to come see me from social work, no more.
Going to try sleeping now. Let's hope I actually feel better later.
I'm 3 years post-injury, and I mis-managed myself initially, absolute classic 'denial', I was going to do everything I did before, and then some, because I didn't want 'other people' to think less of me... Then it became quite obvious that I wasn't safe to do that, and I came down to earth with a bump.
From having no support at all during that initial 'adaptation' phase I'm in a very messy situation now, BUT, after standing my ground, and refusing to accept "Come on now, it could have been worse." platitudes, it looks like I'm developing something of a support network. It's not in the least bit cohesive or co-ordinated, and the professionals orbiting around me are either treading on each other's toes, risking duplicating actions, or juggling me like a hot potato... It's a weird situation to be in, because my old job was co-ordinating complex, multi-agency care-plans, I'm not used to being 'on this side of the desk.'
The systems and processes are slow, and patchy, and I have to keep reminding myself that I'm not 'all' I was before, that I can't navigate through all of this by myself. In the early part of the day, I can have brilliant ideas, and think of ways to co-ordinate the communication between the NINE different people who have a peripheral engagement with me, but, by lunchtime, I've usually forgotten who said what. (Need to watch myself on the "That's NOT what you said!" anger-spikes, as well, these people are trying very hard to do their jobs with huge caseloads, and a lack of resources...)
Resources and systems will vary between regions, Headway will be able to signpost, if not work directly with you, it's probably a case of presenting to your GP, and explaining that you're struggling to function, that the BI is impairing your ability in 'x' ways. (Don't accept a pat on the head, and a "You're doing really well, considering." brush off, if it's having an impact on your daily life, that needs addressing.)
I'm going for the final part of my Neuro-psych functional assessment next week, I asked for the assessment in spring 2016, then life got in the way, and I didn't have it. Workplace Wellbeing asked again, in autumn 2016, and I've only just managed to stamp my feet enough to trigger the process to have it now, in 2018. (After almost a year of general low-level IAPT counselling, which wasn't at all appropriate, but fell into the "You need to try this first." category.) That assessment will give me some baseline data on which bits of my functionality are impaired, that I can hopefully then use as evidence for DWP and PIP, that having my shoes on the right feet, and not eating people's paperclips *doesn't* mean I'm fully functional.
I think that all any of us can do is keep pushing for support when we need it. Easy to say, harder to do, when you're juggling life at the same time as an injured brain.
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confusion & anger 
Is this really all worth it.....?
The world just keeps on turning
I GIVE UP
