Pip!!

[tillytimebomb2]

I just want to give all of you going through the pip process a glimmer of hope!! It has only taken 6 weeks start to my award and pleased to say that the assessor really was as nice as she came across, I have been awarded enhanced on daily living and mobility, what a weight lifted and now I can try and regain some normality, good luck to everyone else waiting, I just wished I hadn't stressed so much and read so much!!

[Sem2011]

Congratulations! I am so pleased, good, good news. As you say, you can relax and focus on you!

[sporan]

Hi Tilly,

I'm glad to hear a positive experience with PIP only some of the horror stories put people under horrendous stress waiting for their assesments.

I must admit to having had a similar good experience a couple of years ago with the ESA assessment where I was put straight into the support group, although I have to say that whilst relieved I also felt sad in that I was deemed ill enough to be there, especially after having worked from 16 to 58 (mostly 50hrs plus a week) and the propaganda seeming label all benefit claimants as scroungers.

So glad that you had a good experience.

Take care

Sporan

[tillytimebomb2 in reply to sporan]

Hi, I was the same about being labelled, but after a year struggling I thought no, we have worked since we were both 17 up until last year, we are in our 40's now and I need this and my family do to ensure I get the help to give me a sort of life instead of an existence,

[razyheath43]

YAY! great news

[EleanorS]

Oh God I am so pleased for you thanks for posting this. I had wernickes encephalopathy also along with brain injury from diabetic keto acidosis. I don't know where you stand on claiming Esa if you are married or living as married, but that's besides the point of your post very very good news. Take it easy and take a load off your mind

[tillytimebomb2 in reply to EleanorS]

Wow somebody else I've yet to speak with anybody who has w.e. How has it affected you do you mind me asking x

[EleanorS in reply to tillytimebomb2]

yeah i know, wow

hi, sure, i know that feeling

there is someone in my locality who had w.e. within recent years and i think that she returned to work. ive only heard about her not spoken with her. she successfully sued the hospital for missing it, i think she had it at the same time as diabetic keto acidosis . she has balance problems and cant drive as far a s i know.

i am 3 years down the line.

my short term memory has become loads better but not perfect. especially in the beginning i had problems with the passage of time past present and future. eg, in the beginning i wouldnt know where id been or what id done yesterday - im nowhere near as bad as that now, (she says touch wood).

i dont know if you have these things(?)

nystagmus, my eyes flicker.

i have residual ataxia, that comes from the cerebellum. at first i didnt have enough balance to sit on a bench , now i can do most things.

i think you are about 1 year past the brain injury (?)

i think at this stage i was still absolutely incredibly exhausted for a lot of the time with bursts of energy inbetween.

i think that the ataxia did most of its improving within 2 years. ive got one crutch for around this town, and two for greater distances. to be fair this interacts with visual deficits .

i think that the amount of info that im able to take in, my concentration, and brain fatigue has carried on improving up to year 3, where im at now. in year 1 my brain did an awful lot of shutting off and shutting down.

i think for a good portion of year 1 i didnt really have something thats known as "mental capacity", thats the ability to live life making good decisions as an adult.

(im not sure if my vision has been damaged due to diabetic keto acidosis or w.e.)

i have a funny speech disorder where it like a non swearing tourettes, or sometimes i just say syllables constantly like c c c c or g g g g again im not sure if this from w.e. or dka. music helps a lot to re-order my speech.

i can have anxiety and i dont know why thats happened, its strange isnt it (?)

i think with that, i wait for time to pass and look back on it and think i cant believe ive been so anxious over such and such. however anxiety has got loads better though as well.

at first my disability was described by the neurologist as significant, it was an interplay between my hands just didnt do what i told them to do, i couldnt walk, and i couldnt see ( i was blind initially). but again all this has improved loads or ive found ways round the clumsiness/ataxia and the walking has improved loads.

i reckon that i should have had neuro physiotherapy, i wasnt offered this, the physio in the community hospital that i had was all wrong and made me worse with pain and spacticty in legs. maybe if youre not having it you could look into neuro physio on the NHS, if this is applicable for you (?)

i think i felt that especially in the beginning in eg formal gatherings that a new personality had been transplanted onto me, and i couldnt predict what it would do, even tho i knew it would do loads of daft things (goodness knows what they would be), and i told it not to , it still did them..strange.. this has got better but is still not as before the injury.

i think its important t remember that peoples recoveries can go differently ...(i was blind paralyzed , totally in cloud cuckoo land, perhaps i had more ground to make up but even ive come a long way towards normality or so called normality)

i do apologise this is getting very long. i think im trying to say that in the time space of months and months and eventually a couple of years from where you are now , you will be able to look back and say ive improved considerably.

( i couldnt write initially)

i got my medical records and there were a couple of things in there that i'd not been told.....i think its good to actually see your brain scans and have it explained to you whats gone on there, or not gone on there.

i am potentially suing the 1st hospital i was in also, who missed the dka and w.e. , so i have to be a bit careful what i say.

if you think you can, tell me how w.e. has affected you? i totally understand if you cant reply, (maybe thats just me but i found online communication quite challenging i think for at least a little while).

so take it easy now, ( i know ive given loads to read and loads of info to take in).

x

[EleanorS in reply to EleanorS]

edit. sorry i'm adding a bit more as a P.S.

your doctors might have done this, but if they havent , get them to check that theyve checked for mineral and vitamin deficiencies across the board ( my vitamin d level was undetectable, and selenium levels were low).

make sure that your gp and neurologist are assessing you properly . i certainly dont want to scaremonger, because my situation was a bit unique because of the potential negligence but i was neurologically underassessed). it needs to be recorded in your medical notes what challenges you face.

ive given an awful lot of info to digest.

tell me how things are with you if you can? if youre feeling really tired tho dont worry

take care. great news on the Pip

[tillytimebomb2 in reply to EleanorS]

I do struggle on internet alot, I have everything you have described, except I didn't go blind, my anxiety is through the roof, thank you so much it means so much to me to have somebody that understands the problems, I have to have thiamine and b costrong for rest of life, thankfully I am here to tell my story, now I've forgotten what else I was saying, but again thank you!

[EleanorS in reply to tillytimebomb2]

hi

not at all ,

i dont think that it crossed my mind that someone would post like you did yourself, that you had wernickes encephalopathy, and also that someone like you did yourself, would post about the anxiety.. thank You , it means a lot to me.

(altho i was experiencing anxiety around year 1 and my family were commenting on it, i couldnt identify it in myself even tho i had been described as 'anxious about everything', i was very unaware of what was really happening even tho experiencing things full on.. an odd thing to do with brain injury..) so i guess in a way its a good thing that you have the awareness to recognise anxiety when you consider that some people dont have a good awareness of themselves early on, you are still in early days if i may say which is another good thing.

ive not been focusing on the effects of the injury, focusing as in eg finding the right professionals to assess and help, but i will be doing that now so perhaps there will be stuff i can post up or share.

the anxiety has had recently a severe point , however what it was that caused the anxiety this time would have been very challenging for a non brain injured person to deal with. so my head just seemed to go through the stages of what it was it was doing the anxiety worked itself out, i just latched onto a couple of coping strategies, whatever worked for me, (for me it was talking and going for walks) and before too long i came out the other side, when it might have been hard to see another side sometimes .

i think its good that given time for us to work out what are brains are doing (ok i am 3 years down the line now), we can get through things.

sorry i didnt mean to go on about this.

more so in the past ive really struggled on the internet, but i wouldnt have had what it takes to have put 2 and 2 together to say that.

this is long again sorry.

where you are at now is still early days remember.

i am on the thiamine and b strong for life

ill let you enjoy the rest of the day now but

any questions you might have or anything you want to say , just ask or say.

take it easy

[Hidden]

Well done

[MXman]

Hi Tilly,

Thats fantastic news as said now you can concentrate on YOU. XX

[leonardc110]

Well done I am very pleased for you. It would also be good if you could give some more detail about your assessment which would help those of us still waiting.Thanks

[tillytimebomb2 in reply to leonardc110]

What would anyone find useful, all I did was be myself, tell the truth although it was a huge struggle and I did burst into tears at one point, my lady was lovely, and I don't think she tried to trip me up once, I think she could genuinely see me for what I was, any questions I will try to answer

[Mads1975]

Congrats! It is such a euphoric feeling to receive the award. Now you can concentrate on the rest of life itself, a little bit easier than it is without to idle PIP!

[Janluxton]

Well done on getting it so quickly! Mine took 1 year exactly from my claim to my first payment. They say it is backdated but that doesn't help you at the time.

Glad that you got yours so quickly

[Tia-01]

I have just got my husband to agree to applying for a PIP. He had a TBI nearly 8 years ago. Before this he worked for nearly 30 years in the Health Service with glowing reports. After his TBI he returned far to quick to work and ended up losing his job due to inappropriate behaviour - saying inappropriate things! He had been diagnosed with cognitive behavioural problems . Anyway long story hes not been able to hold down a job without being suspended for same. I had applied for disability allowance years ago but was told he didnt fit the criteria although they could sympathise with his condition he got nothing. Its been a long 8 years of struggling but I have now got Social Work involved and hope for his sake he gets some award. Wont hold my breath though.