Thank you

To everyone who responded to me after bad night with sleep again, thank you so much. I really need you all at the moment.

Went to Neuro yesterday and couldn't get the words out that sit in my head screaming. I cant help it, I ended up acting moody instead.

Tried to have a conversation with someone today who was talking at me - I couldn't understand the purpose of what he was saying.

I feel so lonely, I don't seem able to communicate in verbal words.

I have psychotherapy tonight, she will ask how I have been - the most difficult question in the world.

I am sure you others all know what I mean.

People on this site are very dear to me.

Regards

Julesveryfedup

18 Replies

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  • Jules if you are not able to articulate verbally can you perhaps type out something and take it with you? I find that works for me.

  • hi iforgot , yes sometimes that works, but 9 out of 10 i refer to my paper and it becomes muddled up - i cant focus on what i have written. I think 'iforgot' is a brilliant 'name'.

  • Hi Julesgettingthere,

    WHat I've done in the past is actually hand my notes to the doctor/consultant so that I don't have to read them or forget passages.

    The advantage is they find it quicker to read and will sometimes pur short notes or marks by way of answer memory aids which works great for me because as soon as I'm out the door or on a good day home I've forgotten if not whats been said the context or importance of it.

    Memory and confusion probs are real b**** at times it's just finding ways around them.

    Hope this of some help

    Kind regards

    Sporan (not ancestral, nickname from teenage days of attempted beard growth)

  • Jules was because i was born on the world cup day 1966 - something to do with the 'Jules Verne Cup' .... I hate football and dont know if that is right.

    Good to have a happy chat for a change 'sporan' i thought it was something to do with gladiators ? I am very dim.

    Jules

  • I am a 1966 baby too Jules :-) .A good year! I'm not much for football either. When I'm at any appointments i always get super confused and have massive memory gaps.I cant help it.Its strange why its worse when were questioned?My mind freezes when trying to answer i suppose yours is the same?

    x

  • Hi Karen,

    I am not into football no more, I hate it. I used to like it. In 96 when I had my first op, I couldn't wait to start playing football again. Over th years, football really started to bore me and then I wised up more and I can't stand all the money that goes into it, it is such a wate. That money can be used on so many good things, helpful things. £50 million could be spent on a certain striker and the next day they could drop dead! What a complete waste that would be.

    Oh don't forget the £100,000 salary they get a week for doing virtually sod all. Well it must be sod all cos our England football team have not won the world cup for years!

    And they call football 'the beautiful game'. Tell me, what is so beautiful about a bunch of hooligans having fist fights with people who support rival teams?

    A load of rubbish I tell ya.

  • Well at first Geoff, I thought 'sporan' was a hint to say you were Scottish but that is not the same spelling. So your username does not resemble a furry purse after all haha.

  • I missed the extra 'r' our becauses there are already too many 'ahrs' in the west country ;-) Wurzel I wantid to be zumat difrunt Iz did;-).

    I supporse in Gosport it's 'Oh har me 'arty's heave too there'

    Off to look at your new piccy now.

    Take care

    Geoff

  • I can empathise with the verbal problem Jules. It can take ages to compose a post on here but it's by far the most comfortable place to be, as no one needs to wait around 'til I get my words together.

    It's good to know you also get comfort from being here. Good luck with your appointment later. xx

  • My psychologist appears to have dumped me but although it helped me know what to do out of zillions of jobs stressing me out she refused to give me receipts and went behind my back and talked about me when I wasn't there (and had told her not to) AND told me I was 'over dramatising' when VERY tired stressed and upset. But now NOBODY to get all this stuff out to, NO help with ANYTHING,not even my upset and muddle.

  • Hi Muddled

    I love the name 'muddled' its how I have been described on many occasions.

    You do have this site and all these people to talk to who understand more than most what you are going through.

    Hope you have a good day

    Regards

    Jules

  • Thanks Julesgettingthere. Yes, LOTS of us very easily muddled! Got back today LONG drive, tired. MEGA stress before I left, must try describe, sort of not real, is this ME making myself be VERY brave and try do this? Then pride = DID it. But then utter devastation: realisation that maybe yesterday was the last time I will ever ski? Hurts, SO bad, another loss: right foot SO weird, floppy, with awful spasms after (injured bad May 2010 and never properly examined, explained or treated but well deformed).

    Then MEGA stress driving back, 2 hours continuous, the stress made it feel like I had forgotten how to drive, heart going, BAD gut pain, felt bit sick.Then the awful thing of not being able to remember roads/place names that I drove 2 days ago. And not recognising until much closer to where I live (not 'home'). And other complicated things = SO confused and overwhelmed and lost = fear.

    Exhausted, showered, car emptied. Yes: terrible mix of achievement = I did that (though the fear stopped me for SO long, lost confidence driving now and that was what I was best at) and EXTREME sadness: too old, too broken to do what I LOVED in 2009-2010. Very sad and nobody left to talk to about how I feel.

    HATE coming back here = place COVERED in papers all over surfaces and floor. BUT: as recognised roads, climate warmer, SMELL of near here = felt I was coming home, not where I live (where my things are) but this AREA, the area I chose but am still fighting (but broken and too exhausted) to be accepted, included and to get the help I need = FAILED. I know not my fault but it's made me lose the bit of confidence had left = now driving too = the worst, that was what I did well, calmed me,now not even that does. THAT'S what constant failure and stress DO. Shocking,an eye-opener and must try explain but so hard to.

  • Hi muddled.

    Sorry its taken so long to reply - haven't been on line for a while.

    So much of what you have written rings bells for me... it must for many reading it.

    Trying so hard to explain things that it is important to do so correctly - my head goes odd. Its the only way i can explain it.

    The feeling of pressure and failure and not being accepted - yep, its with me too. I can tell you the only thing i feel part of the team with now is the people on this site. I know its stupid, but i have become quite protective when my asked about it from 'outsiders'.

    You sound a very interesting person - a good person who is struggling. You learn dont you that after a head injury you need to keep picking yourself up and dust down, even when loved ones dont realise they have caused you a 'mental fall'. The effort needed to try and cope without being different from those around you is enormous.

    You were talking about driving -i experience problems also. Some of them I find it difficult to find words for without being misinterpreted. I get the sick feeling and forget routes too - but i also sometimes have problems 'seeing' the road markings (especially at night) and sometimes cant 'see' the layout of the road coming towards me. Very frightening - its not my sight - thats ok.

    Do you experience this 'seeing' thing when driving, or anyone else on this site ?

    Regards

    Jules

  • hi Julesgettingthere

    you say: Trying so hard to explain things that it is important to do so correctly - my head goes odd. Its the only way i can explain it.

    Yes: think I have BIG trouble trying to explain the things I have big trouble seeing, understanding, doing = coz (I think) that part of brain (its duties/jobs) damaged so not only can't DO but can't EXPLAIN properly, tried so many times typing (hurts physically) but even then I'm ignored and 'just mental health' or 'you're a PSYCHIATRIC case', sick of trying, pointless and yes, it HURTS every time: the trying to do and being BLANKED, fobbed off. You do get used to being treated bad though, daren't hope that THIS time they'll do as should, but it hurts STILL, EVERY time = they must WANT that, why?

    you say: The feeling of pressure and failure and not being accepted - yep, its with me too. I can tell you the only thing i feel part of the team with now is the people on this site.

    People keep saying GAME and TEAM and MIRACLE and MAGIC WAND and MAGICIAN and SOCIAL WORKER and MUST DO... = SICK SICK SICK of it. Nobody gives a toss, they fin it fun to have a little rôle? Ha ha they go: yes, between a rock & a hard place, ha ha: very frustrating. SICK.

    you say: You sound a very interesting person - a good person who is struggling.

    Good person? Don't think I'm a bad person, I'm human,just do the best I can, try treat others as I'd like to be treated. Struggling = YES, have been for years. The ABI was dealing with best I could and PROUD but am now worse and that hurts bad, worked SO hard to improve brain, memory, doing things and PROUD of what I did alone, now UNDONE, hurts.

    you say: You learn dont you that after a head injury you need to keep picking yourself up and dust down, even when loved ones dont realise they have caused you a 'mental fall'.

    Not only loved ones = people PAID TO HELP ME knock me back down on purpose and find it funny, hurts. Gets harder and harder to try pull myself up out of the big black hole they pushed me into on purpose, more broken,more tired, no hope left it'll EVER get better or easier now. More jobs piling on = too much.

    you say: The effort needed to try and cope without being different from those around you is enormous.

    You're only allowed to be different in certain ways. If you step outside that you're PUNISHED and THREATENED: 'BEHAVE, OBEY OR ELSE...' and rules/laws say they can break down my door and snatch me and keep me prisoner, force me to eat food that doesn't suit my damaged guts at times not right for me, leave me starving hungry and hurting guts for 1.5 hours (this time), break in and steal my things coz not paid debts should have, force me to take drugs that make me VERY ill and even less independent. But if I did that to anyone else I'd be put in prison for a very long time.

    you say: You were talking about driving... Some of them I find it difficult to find words for without being misinterpreted. I get the sick feeling and forget routes too - but i also sometimes have problems 'seeing' the road markings (especially at night) and sometimes cant 'see' the layout of the road coming towards me. Very frightening - its not my sight - thats ok.

    My eyes NOT OK, sight and understanding what I see damaged in op. Told GP at start: my eyes can't keep up with my movements, I meant too that my BRAIN couldn't. Told him TV going too fast (movement and words) but he ignored it all. Could see moon and stars and text on TV easily before then instantly after = couldn't. Ignored by GP two times (at least) and opticians.

    you say: Do you experience this 'seeing' thing when driving?

    So hard to describe. Driving easier than at home I think because relearned the doing it on automatic which can't do much of for other things STILL. Lost ALL on auto after op, got some back better than others. Driving I'm not moving much of my body or having to hold it up = less to do. Can SEE what I need to do, know without really thinking most of the time.

    Don't like bad light: find (since op) driving bad light (doing anything) hard. Can't see colours at night which help know what things are, helps decode what see, not always correctly but extra dimension of info = helps, as does texture. But all very monochrome at night, GLARING lights dazzle me and stay in vision after like burn into it. Little lights sides of tunnels, railings or trees with sun/lights coming through = makes my vision REALLY odd coz of FLICKER (light-dark very fast), feel VERY strange.

    All the time I see things now I don't understand, not sure what are but driving = cars, signs, trees, roads = quite simple and alone in my car (FAR easier though LOVE passengers/chat = too tiring for long) = QUIET, NO TALKING, no radio, no music, just sound of engine and wind = calming. In town = busy, harder work: too many colours, too much publicity and silly signs everywhere and lots people and traffic lights and crossings and dogs/cats and babies crying and people shouting and sirens and drills and road sweepers, all going different ways, on big fast roads = very little conflicting movement.

    So BIG difference between empty roads and busy town roads. Where I used to live = worse than here, here better, calmer, UNLESS must try drive into BIG town here, only done Sunday/xmas day, HATE too-busy roads now. Told DEA at Jobcentre andABI counsellor UK that, changed counsellor times coz then AFTER rush hour = less stressful.

    Worst for this 'seeing' is at home: get dizzy turning round doing things and looking for things and left big toe joint hurts BAD, think cozI swivel on it to turn coz right side/leg/foot odd after op? So that toe joint hurts MORE since lived here (BAD now) coz turn round for things more, wrong places, not ergonomic at all. Home = clutter and papers = more complicated than quiet roads and spend more time here/looking for things than on busy roads but as I said not moving body much driving so easier even busy roads than at home. And now papers covering even MORE of floor, hardly a way through, I HATE living in this mess, chaos and filth, HATE it.

    So no really, clutter at home worst, then busy roads then BEST = quiet roads = LOVELY. Not sure if I've answered?!

  • Hi

    When ever I took my wife to see the Doc or Specialist after she had a SAH she would clam up , so I started to take notes in with me either to hand in or use in the consultation . I know this is a complete pain but if you can make a list when things are calmer it really works . My wife could tell me how she was but nobody else especially somebody new or even a stranger , Hope this helps

    Stef

  • vwvanman: it only works if the docs ANSWER your questions! I even spent AGES trying to write (in french) lots of my symptoms - but STILL the doc (if that is what she was) refused to query MRI/CT/xray reports, STILL put psychiatric as number one diagnosis and STILL refused to ensure I got proper examination, info and choices of treatments.

    Wrote notes from start (had to) but first GP (and others and psychiatric nurse) ignored all my serious symptoms and kept saying 'mental health' and 'take antidepressants. They MUST have known full well that I was injured physically but chose to neglect me.

    The locum I saw summer after bungled op = I gave her 2 pages of my symptoms and asked her to read them. She was very abrupt with me, unfriendly, unhelpful and totally dismissed me, my injuries and my pleas for HELP coz main GP refused to, but she gave me only options for mental health again, why? I KNOW there was something on the PC (a phone call = it became obvious) and she had either read that and/or been told NOT to help me, ONLY mental health. Now what would MAKE a doctor behave like that? Inhumane and cruel.

    And latest neuro (was told he was anyway) said 'no time' had only few minutes there and he didn't examine me and refused to answer ANY questions. Why don't people care what this is dong to me? BAD trouble with my eyes and skin at mo (LEFT eye hurts really bad now and lump), tried to self-care but not working = NEED MEDICAL CARE = URGENTLY. Why can't I have that?

  • Shame I sympasize with you! Xx

  • Hi Jules:

    you say: Went to Neuro yesterday and couldn't get the words out that sit in my head screaming. I cant help it, I ended up acting moody instead.

    I often can't get the words out, go blank, brain empty but not: full of scribble and scramble, all flowing clouds of info and am lost in it, moving and waving around, awful, so hard to describe. Some days can hardly talk, try hide/escape when I'm like that, HATE people seeing it.

    you say: Tried to have a conversation with someone today who was talking at me - I couldn't understand the purpose of what he was saying.

    I went to laundrette today and bloke arrived who just wouldn't stop talking, tried to keep up/understand bit only got a bit. SO wanted him to shut up, dared not say = rude, but getting frazzled, exhausted, dizzy and sicky feeling standing and trying to understand his ranting. Was doing OK til then but struggled to get home, vision had gone odd coz overload. But how can you KINDLY and SIMPLY explain this to people? Can't coz when I'm like that talking = very hard and can't THINK either.

    Then back here (not a HOME) and STINKS of damp, opened windows but drills going on and on, couldn't even sit in garden get ray of sun coz MEGA noises and me tired so had to go in, shut windows try rest but couldn't coz then OVERtired and brain wouldn't shut up or let me rest. That's when get SO low: need SILENCE/REST and then cry, I NEED quiet, NOT making a fuss about nothing. Then neighbour's machine (he says it's a dish washer) started... = OVERLOAD, STRESS and DESPAIR.

    You say: I feel so lonely, I don't seem able to communicate in verbal words.

    I can SOMETIMES but varies loads. Lots of what I experience I haven't got words for, don't know HOW to describe them. Can't even do it with art = SO sad, always could. Yes, I feel totally abandoned and extremely lonely but because talking so hard think my life must be like this now, SO SO SAD, I LOVE being with people, chatting and stuff = the HARDEST part of my ABI maybe. Lost what makes us human = me not now.

    you say: I have psychotherapy tonight, she will ask how I have been - the most difficult question in the world.

    The psychologist (she says she is anyway) asks me but if I say/cry I'm told off for being how I am. But nobody else to talk to so going back for more = proof I'm mad - ha ha - after how SHE'S behaved. See, I'm SO stupid, gullible, easily manipulated and led, what a DUMBO I am, oh but I read we must tell ourselves 'affirmations' like 'I AM a good person' and 'I AM doing the best I can' = this latter I KNOW I am but not good enough and never ANY good feedback or congrats or well done for all my hardwork = coz it isn't WORK to anyone else, only me (who else?) knows how knackered I am even after washing up or going to laundrette or even HARDER: making phone calls. Who KNOWS/FEELs THIS?

    I've lost hope anyone will listen to me and BELIEVE me, Headway do, did, but now NOBODY. Bloke near here with ABI but I find it SO hard to talk to him, even english ABIers can be v hard for me with my understanding problems (and 2 friends had UK were hard to understand, not ABIers but TIRING try. I got EXHAUSTED last time tried talk with him and he grabbed me and kissed me, didn't like it but said zilch. Old bloke in street asked me if he could kiss me after we'd had little chat/laugh and I couldn't SAY ANYTHING. Shocked at myself: inside screaming NO but couldn't SAY it, why? Before I'd have said NO so easily. Scares me coz feel can't protect myself, can't with docs either, one examined me and I just let him while crying, had gone into shock. HATE how I am now with things like that.

    But psych only helps me know (tells me = but is she RIGHT?) what jobs MUST do. I feel like she not listening (or is she?) to what all this FEELS like and how HARD it is. Why's nobody believing THAT? I try SO hard, push myself SO hard but it's NOTHING to anyone else so it's belittled and people ask 'what do you DO all day?' and can't say but know am busy most of every day, NEVER (exce;t rest/sleep) doing nothing and now NO rest coz stress, brain won't stop.

    But if you say: washing up, putting away, phone calls, emails, washing clothes at laundrette, washing my hair, tweeze eyebrows, shower, cut my toenails (today and back hurt BAD), choose/find clothes to wear, cleaned inside car (not done since end summer) and screenwash in, think morning (if remember) what to eat that night = defrost if necessary/prepare if salad coz too tired to do that later, find birthday card for friend to write/send, check electric meters and ring up/try understand choices = it took 4 phone calls coz one I pressed not the hash key the odd one below it, put heater on in shower-room, write down time and carry note so don't forget, wipe floor after coz silly design/not a BATH, hurt back bending down to shave legs = BAD: up & down = awful, bathe my eyes coz lumps hurt SO bad, put cream (try every one I got = months now and doc ignored) on the weird patches on my skin ROUGH and ITCHY, hang washing out, turn it so other side/end dries, bring washing in then re-hang inside, coffee ready for morning = THEN REST. Then try do phone calls/paperwork and stuff TOLD I MUST do but worn out doing all things I MUST, HARDLY EVER things I WANT to do and when I DO = stress coz not doing what MUST do = mega anxious/fear and guts bad coz not eating what should/when and different food...

    Too much to say but I say it to invisible person/people. Need REAL people HERE to CARE and HELP.

    But no point asking any more: I don't matter.

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