GPs/docs should write down OUR free text, far better first-off, how WE say it. But my GP (and others) didn't write down all I told him/them (tried so hard but missed loads, still do, can't do lists) and didn't even do any little exam: not really necessary coz he HEARD what I told him like having to write everything down, forgetting I had my period, holes in my memory - couldn't remember holidays and SUCH hard work to try to = kept trying but kept giving up, suddenly couldn't drive/concentrate properly... = these are RED FLAGS!
Yes, we need to create a new one that picks up on OUR disabilities including those said to be 'subtle'.
Tricky coz each of us loses particular things. And should be several versions of each, in case.
Me:
- Numbers and maths, but was high-functioing before so 'average' might not catch me.
- Short-term memory. Couldn't remember the name & address just read online test BUT coz I didn't concentrate enough and put it into long-term. Also depends if address name/numbers ring any bels for you personally. And IF doc had said 'concentrate/pay attention, try learn' or paused/repeated = maybe.
- Preparing food and cooking (and fires!).
- Cack-handedness, using left hand more.
- Not able to see or pick out icons on PC.
- Sudden new dyslexic/reading problems, scanning, understanding what I see.
- Forgot spellings/meanings of words always knew, tel. numbers, names, facts.
- What they call reterograde or anterograde (? STILL can't remember and read SO many times) amnesia = I mean for the past/history, before the time of accident time = NOT a clear line like they make out, for me = all fluid: time period before/after ABI all swirly and weird = several years, know some things were before or after but sometimes not sure, try think, confused.
[I find this = lists/thinking SO hard to do = others help?]
- Looking for/seeing/finding things.
- Money and coins/change, paperwork, forms, filing.
- Little maps/routes, local. Distance/big routes easier coz signed. Fail at end-point,to find.
- Date: might have written (try to daily, try remember),might not have. Have mixed up days/dates/years. Med records= dunno many dates/months/years, know some.
- What's on news = too easy, they must refine.
Really comes down to LOOKING, seeing changes in us if they know us (my GP SAW & eyes) = family/friends = ask THEM. If none and emergency need mini state exam that works. Too tired now but PLEASE can clever people work on this to catch us ABIers and FAST?! Mix of free text and simple Qs.
I searched net coz KNEW my brain wasn't working, found lists (dunno what/where) of symptoms and ALL FITTED and felt phew, I knew it, felt GOOD. But didn't think/not able to take GP and use/say, STILL hard to do that, now. Keep being told to but it's SO hard and can't even explain WHY. Awful.
Ask ALL ABIers, families and friends to help create new ones that really work? And if GPs/docs don't use them = must justify why not and if use and need referral but don't = must justify. But I needed fast independent access DIRECT with experts brain. GP was a barrier and prevented/didn't say. And counsellors questionnaire BAD, they too must have Qs for ABI, I tried to write but wrong Qs. Psychology MUST do better and I expect they want to?! But psychiatry (some of them!) and Big Pharma might not want to? Dunno.
You are clearly very troubled that GP's and Docs are still not understanding your difficulties or responding to them as you would wish and need. Unfortunately the length of any apt is time restricted and it is inevitable that they are going to précis what you say. I feel for you that things are not getting sorted and consequently you are stuck with lots of upset and anger which is impacting by causing low mood and preventing you from being able to move on with your situation.
I found it impossible to follow your post and I hope I am not going off at an inappropriate tangent? I can grasp your absolute frustration and despair in all your posts and I feel very saddened for you that your life for you is so rubbish.
Thanks straw cream. Yes, I'm VERY muddled (hence the name) and scrambled. And people expect ME to find 'solutions' = they keep telling me to, can't. Mental health nurse laughed, ha ha: yes, VERY frustrating, she thought it was funny. Dunno why people find my situation funny? Not when you're living it though I try to put brave ('fun') face on as often as I can, in public.
Thanks. Sadly others' sadness for me doesn't translate into real PRACTICAL help. Nobody believes anything I say. Sick of being labelled a liar, exaggerating, over-dramatising. Hurts SO bad. But nobody cares, not really.
Hi muddled, I understand what you are saying and agree, I know this won't help you but you put so many of my thoughts into words. Something I still can't do.
Want to put more, too tired, never finish. Will try again tomo. Take care K
Thanks Aqua. I try to write it because often can't say it. But even writing = not great, varies, at mo = AWFUL most of the time. Don't worry about putting more: I don't know what to say to try help others, it's very tricky.
Can't sleep and in BIG fret. Night night.
Oh and you saying I put your thoughts into words is lovely, thank you.
I agree with Strawberry and am very sorry you have to live like life the way you do.
You were saying one time how you can walk and talk just fine, as if nothing was wrong with you. I know people who are similar. They look like nothing is wrong with them, they can walk just fine. Their injury would occured in the most easiest way as well, they slipped and hit there head.
At first it would be passed off as nothing until difficulties in certain areas would arise.
Back to the talking part, I am rambling again :). You can talk well, in person, right? But like I said, I agree with Strawberry, I could not understand your post. I do admit I am a bit tired right now but most posts and comments I read from you I can just about put together that makes some sense to me.
I am not trying to be horrible or anything like that and it does concern me that you say noone believes you, I find that very strange.
It seems to me that when you write these letters and things, you aren't sure of what you are writing and that may be why no one believes you, I don't know but that is how it sounds to me. Can you not phone a 'professional' and talk about your problems over the phone as it seems like that would be an easier option.
Do you get nervous when you speak or weite about your problems?
If I were in your shoes I might write a letter, or phone a 'professional' and simply say to them:
"I have a brain injury and I require help".
I lovewould think you are getting so annoyed with all this, non believing thing.
Take care,
MJ
Hello Matt.
Can't sleep even after tablet: MEGA fret.
Using yours and I'll say, VERY tired, feel dreadful.
You were saying one time how you can walk and talk just fine, as if nothing was wrong with you.
- yes, varies though and THINK real experts might see IF at times most noticeable. Sometimes can hardly talk and not understand anything people say but that's rare, only if way overtired and usually I hide and shut up then, rest/sleep.
At first it would be passed off as nothing until difficulties in certain areas would arise.
- It's been passed off for over 9 years and difficulties were there (arose) straight after op. And did best I could to learn and improve. Tried hide how I was, we all try/do! I KNOW docs (and others) HAVE seen some of my problems but are blanking it. Why?
Back to the talking part, I am rambling again :). You can talk well, in person, right?
- As above, sometimes. But can't EVER really say what I want or need to. Write better than talk but same: can't ever write what want/need to. Both talk and write (and understanding what read or hear) all varies, from really quite good to DREADFUL.
But like I said, I agree with Strawberry, I could not understand your post. I do admit I am a bit tired right now but most posts and comments I read from you I can just about put together that makes some sense to me.
- Yes, VERY exhausted scrambled, low, scared of where I live and weird stuff here. And I sign things I haven't read and don't understand. I buy stupid things coz people tell me to or I don't know if I want/need or will be good or useful. So I try now only to buy food mainly, can't trust my self or judgement, awful.
I am not trying to be horrible or anything like that and it does concern me that you say noone believes you, I find that very strange.
- yes, I find it VERY strange and makes me feel I'm mad. At start I TRIED to believe I was imagining it all, nearly succeeded but tiny bit of me knew I wasn't. Lost it though in Jan 2006 when went out to kill myself: broken and destroyed by the lies from doctors, anaesthetists and hospital - including Chief Exec's letter.
It seems to me that when you write these letters and things, you aren't sure of what you are writing and that may be why no one believes you, I don't know but that is how it sounds to me.
- I'm too muddled. I try to write but dunno what to write and to who. Kept trying but too long and stupid or NO replies. Can't keep doing it and writing/typing (and art+) = bending neck, head forwards, hurts my neck/throat big-time. Dunno why they don't believe me, can't get my head round it. But I was labelled liar, malingerer, making fuss about nothing from start so I just tried to get on and deal with it all, as you do. 'Soldier on' the counsellor called it.
Can you not phone a 'professional' and talk about your problems over the phone as it seems like that would be an easier option.
- YES! I'd LOVE that!!! People rang me and changed appointments today:one cancelled and different one brought forwards. HATE it when they do that: disorients me completely. Dunno why I said OK. Didn't think. Part of me NEEDS to say things, ask Qs. But maybe no point coz can't ever do it right and just get lies/dumped after. Stupid me: can't learn?
Do you get nervous when you speak or weite about your problems?
- varies! Speak: depends who with, where, how long for, how I've slept, eaten enough, loads. Sometimes not nervous at all (even in front of loads of people) but other times just going out of home makes me exhausted and nervous. Hate being interrogated then dumped. If I give info = for REASON, do NOT change my words and don't discuss me with others behind my back or pass on stuff I've said to unknown others without asking me. No decisions about me without me, include me. But need BIG help with stuff can't do: banking and numbers, forms, insurances, car, electrics, paperwork, bills... and for docs (and other experts) to tell the truth, give me MY info, I NEED it.
If I were in your shoes I might write a letter, or phone a 'professional' and simply say to them:
"I have a brain injury and I require help".
- Professional? What sort? Tried LOADS and zilch,no help. They refused to answer my questions = if they WERE professional, they claimed to be doctors or I was TOLD they were. Wrote letters to GP early on and hospital but just got lies and denials. Tried to co-operate with them but they refused and I think maybe I was blamed coz of how I wrote the letter but I didn't know any better, only did the best I could and SO hard back then. Asked social services, councils, doctors, mental health, everyone can think of (including police) and ZILCH. I get fobbed off and passed on - and they laugh while they do that. Someone said recently 'oh, you haven't knocked on the right door' but all the above ARE ALL RIGHT DOORS, all meant to be entrance to care and safety nets.
I lovewould think you are getting so annoyed with all this, non believing thing.
- everyone finds it funny = coz not them? Mental health nurse said 'ha ha, you're ANGRY' and 'ha ha between a rock and a hard place' and 'ha ha yes, VERY frustrating ha ha'. In council here all go 'ha ha bon courage ha ha.' HATE it but others LOVE it, why? Funny to watch person being bullied and victimised and abused? Clearly, VERY entertaining for them. SICK.
People say 'break out, run' = can't. Destroyed. So gullible I do what people tell me to. Need protection but shouldn't need it: people sick, no heart or morals.
Appointment moro, no way can sleep enough, spent ages preparing, shame. Too dangerous to drive when overtired so I don't. Not had crash sinceABI, want keep it that way. So moro: she can talk to me on phone? Oh but there'll be an excuse... always is: 'on holiday', 'sick', 'not here'. Not ALL of them are true. None give a toss what this is doing to me and NEVER take how I feel and need into account and then I get told I'm 'too demanding' and 'ill' but you'd think they might think and try be nice to someone who's struggling,for whatever reason. But not for me (and how many others?).
Back & neck AWFUL: typing too much but other than reading not much else can do at mo.
Thanks Matt, people say take care, I try to but can't protect myself, need help.
Don't want ANY more appointments, make me too ill, fret, sleep worse, HATE them. But not getting anywhere. People say 'change tactic' - derrr: would if I COULD, if cOULD would have, derrr. Oh but they don't believe me. SICK>
Muddled I don't want to read and run but it is late and I am tired and rather confuddled myself but I really hope I will be able to find this thread again so I can reply properly...
iforget: please don't feel you have to reply. I read so many posts here and think I should reply but dunno what t say and too confused and scared might not write the right thing. At least I (usually) spell right and write right (ha ha) now, used to make loads mistakes like that!
None of us under pressure to respond. But often feel I should try, but too much going on here for me = get very self-centred, not my fault. Feels bad but I refuse to feel guilty. None of us should.
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