really! If every time someone said to me when they hear about my hubby,"you know they still don't know completely what they are doing when it comes to the brain" aside from that being inappropriate we would be quite well off! What do you lot think? Should I start charging?
If I had a pound!: really! If every time someone... - Headway
If I had a pound!
Written by
razyheath43
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39 Replies
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Yes and we must all charge them for each time they say 'oh I do that' each time we try to explain our memory lapses etc. and 'you're getting old, that's normal' when (for me) it happened on ONE day, age 48.
Do they think they're being kind? It's denial and ignorance, it HURTS!
Yes we both agree! Just read you're reply to hubby let's get rich quick! Xx yes I know it can be hurtful, so maybe charging will help me
Lol sorry us
I suggest we wear a tin round our necks and printed info to give them to explain why they must pay the fine. Bit like the old swear box = feels like swearing at us: belittling our disability. Must teach them!
• in reply to
Lol tin round the neck, made me giggle as I actually have a slot in my head like the collection dogs
Brilliant! Will go and start washing tins out now! Got plenty of headway booklets too,yes it is belittling and tactless, not always meant to hurt but hey it does
Yep - totally agree -I want the same for every time I hear/heard - " But you look SO well!" .....
pretty sure I could help the national debt with my proceeds...
Guess they just don't know ....
Oh yes! The he/she looks so well syndrome! Go for it,do you're bit for the debt! X
Oh yes oh yes oh yes. I get all sorts of crass things said to me all the time I see most of the people I knew pre BI!!!! My over 70 yr old neighbour is the best at it so I should make a mint from her! I've had the 'well you look well', we all get memory problems as we get older', I have a 3 yr review licence and that's no problem, 'we all have to manage on a pension, 'you are lucky to be alive so you shouldn't complain about your difficulties', 'I have balance problems too', 'well you seem ok,!!!! All this from a person who experiences things because of age and forgets I am more the age of her children rather than an oap like herself. It really infuriates and upsets me because as much as I've tried to explain she doesn't aprreciate it and just continues to criticise me. I now avoid her as much as possible but the summer is approaching and we will see each other in the garden and have the enevitable conversation over the fence. Trouble is it is not just her as we all seem to experience the comments are given to us by lots and infect and plaster us like an invisible rash!
You'd love my neighbour, Strawberry ! When I was first told I had likely had Encephalitis she declared that she had probably 'had a bout' of it and when I developed spasticity she came out with the usual 'Sounds like me' reply.It's like the song - 'Anything you can have I can be iller,I can have anything far worse than you ' !
I think it is hard for others who have not experienced the many faceted joys ( ? ! ! ) of a dysfunctional brain to entirely understand how it works.Perhaps those closest to us that live with our problems on a daily basis are the best to understand us and of course,our friends on here and elsewhere who have gone through similar experiences.
I am sorry to hear that you and Cat avoid social contact-I think it is important to integrate despite your problems.I was very embarrassed at first by the effects of my illness but after a while I decided I had 2 choices.Remain a recluse or say 'sod it, here I am,take it or leave it' and go out and immerse myself in the 'throng'. Whilst I do sometimes get some funny looks for the way I move or stutter/loss of words etc. and sometimes feel inwardly a little embarrassed I find that generally if I smile then others smile back and soon realise in conversation that while I may have some problems I am not an alien !
Try not to take other's criticisms and misunderstandings to heart-for what you have been through and the problems you are still dealing with you are doing a fine job, as a survivor, as a single Mum, as a good person : )
I really hope you find your voluntary role at the new Headway a boost.
Angela x
Sounds like your neighbour and my neighbour could be twins as have identical responses!! That have to have it or go one better all the time and disregard or minimize our situation!
I am more reactive and rigid in my thinking now with my frontal BI and it is very hard not to take what people say to heart. Its all part of the dysexecutive syndrome and will not go away. Whereas pre BI it was more water off a ducks back. Sadly isolating myself has become the only way I can protect myself from the difficult emotions that come to the fore if I go out. I now get terrible anxiety if I do have to go anywhere other than the couple of places I have limited myself too and am very familiar with and know that I can keep interaction down to a minimum.
I have just got a 'passport to leisure' card that will give me access to some free sessions at the swimming pool. Hopefully I will find the motivation and confidence to actually go!!
Caroline xx
People don't understand symptoms of brain injuries/conditions do they unless it is affecting them? I have also tried to explain some of my problems/issues to friends but they just don't get it. That's why forums like this one are so useful as other members can be so understanding.
Hi lcd8
Rare is the person who 'gets it' who doesn't know from the experience of having a BI themselves! But for us it is yet another aspect of BI that 'we' have to try and deal with as we can't change what others say as much as we try to inform and educate.
Last summer my son and I went to stay with our 'best' friend in Yorkshire. She is well aware of my difficulties and limitations, yet increasingly my son and I found ourselves left at her house for much of many days on our own. My son overdosed on TV but because I have limited focus for TV or reading etc I was sat with nothing to do in someone else's house and getting increasingly bored, fed up, upset, irritated etc. After a week of this I broached it very nicely explaining how it was for me. The response was that I should take my son to the swimming pool and park. However, that was more than I could manage as even in my own area where I have lived the majority of my life I now get lost finding my way places. Plus I have high social anxiety and going into places I am not familiar with is more than I can manage. She knows all this because is aware of, how me, and what I can manage and do in my life has changed. I did give her a book to read about BI at one point but months later she gave it back to me telling me she hadn't read it because she didn't need too because she knows about BI! We have been best friends since we were 11 yrs old and never used to argue and fall out but now there are frequent tensions between us. I feel responsible for that as I know I am more reactive whereas I used to be the more laid back one who wouldn't persist at arguing a point whereas now that is very hard not to do. But the truth is I feel bereft of the excellant friendship we used to enjoy and immensely upset that nothing seems to be able to get back what we had.
I really feel for you. What a horrible situation and you must be feeling so bad. I'm truly sorry to hear that your friend can't/won't understand just how things are for you now. I guess the trouble with BI is that we don't look ill (ie we aren't physically disabled in the same way as someone who uses a wheelchair etc). But that doesn't mean we don't suffer the same sorts of difficulties and hurts. Would it be worth trying to have a heart to heart with your friend or similar? Best of luck to you.
Sadly I have done the heart to heart chat loads of times because we have always shared life's ups and downs and been supportive of each other, ,and since my BI we have spoken (amongst other two way chat so am not blanking out her and her life) lots about my day to day struggles in phone calls. She has stayed with me and knows from actually seeing how it is but then goes back to expecting me to be the same as I was pre BI. Plus twice I paid for her to come on holiday with us to help me manage so that I could give my son a holiday. She also knows exactly how seriously ill I was and that I wasn't expected to survive because she came and stayed in my house and looked after my son for 6 weeks. That's how great our friendship was, we referred to ourselves as 'family' and she would send me cards with 'sister' on them. However, gradually the friendship is drifting apart and I although I still sometimes phone it isn't really reciprocated much and our conversations are becoming more stilted and short as she is watching something on TV, got to get something to eat or just doesn't seem receptive of me phoning. I find this very upsetting especially with her but also the others that used to be friends in my life and have largely drifted off. I used to be sociable and out and about a lot and now because I no longer fell accepted or welcome to be included, pulse because following and joining in a conversation is difficult - I have, as Cat has described for herself, become a loner and only go out when essential eg take son to and fro from school and clubs and to do food shop. And that's about it!
Bless you. Its a real shame when you can see a good friendship being put under strain and there's so little you can do about it. I have had similar issues myself before. I had some good friendships when I was younger. But things have drifted and although some of us are still in touch it isn't the same. I have sort of resigned myself now to the fact that things are changing all the time and people move on. I have become a bit of a loner too unfortunately and worry that I don't know many people. But then again I don't think I have had a really close friend like you describe since junior school. It must be incredibly difficult. But maybe it isn't all down to your medical condition. I know it might be difficult for you to get out. But maybe the answer is to try and join some local social groups or perhaps a church. Or, I'm not sure if you work or not, but if not what about trying some voluntary work or similar?
A Headway Group is starting in my area next month on one day a week for a few hours and I am going to be attending as a volunteer. So hopefully that will give me a purpose and some social interaction in a situation that will be supportive and understanding.
I had always been a worker and was a multi qualified nurse for 28 yrs before leaving the NHS to follow my heart and be a foster carer. I worked up too (and on) the day I was taken seriously ill but haven't been able to work since that left me with a sustained frontal BI.
Yes I understand. Fingers crossed the Headway group will offer you a whole new start. Good luck!
Thank you lcd8. 😊
I'm used to people telling me that they forget things too. It's water off a ducks back really and not worth getting upset about.
I visited a friend yesterday as it was her birthday, and it was a particularly challenging day for me in terms of word recall. She's always ridiculed the idea that I have any memory issues saying the usual 'Oh we ALL have THAT problem'.
But when I struggled to string sentences together and she repeatedly had to prompt me with everyday words I couldn't find, I saw her looking at me like she'd finally accepted I have a problem.
Rather than feeling vindicated, it just made me feel hopeless & frustrated because, so long as she refused to recognise the problem, then I was allowed to feel normal. But that 'look' just confirmed once & for all why I've become a loner and hardly ever visit her or anyone else (apart from my sis-in-law who totally 'gets' it) .
So it seems for me. at least, I hate it when folk don't appreciate my difficulties .......................... but then I hate it when they do !! 
Hi Cat
I found myself feeling upset reading your post because much of what you described is how it has become for me too. So it hit a sensitive note with me. Your description of yourself as a 'loner' now is very poignant for me too.
Best wishes
Caroline x
Sorry you found it upsetting Caroline. But connecting with other 'loners' through this forum has great value for me because we're all on an equal footing.
When we're stuck for a word, we can just wait 'til it comes and no one is kept hanging on. So it's THE place to be to pass as 'normal'. Even better, no one gives a damn whether we're normal or not ! 
xx
Yes I totally agree that the connection with others on here that absolutely understand has been a huge benefit. I think my upset was you voicing so succinctly what I feel but keep surpressed and seeing it written in black and white (which could have been my words) of having become a loner and how I now avoid social contact. The positive is that your words highlight what we can get from here which is now sadly lacking in our real world.
Cat,one of the few things I remember about the offices I used to clean in County Hall before I got transferred was a sign on the wall. It read ; 'No one can make you feel inferior without your consent' , Eleanor Roosevelt. I like those words. x
I like that quote! And again thanks so much everyone for all you're replies.time to start making some money I think! If we all make enough we could donate some to headway! Xxx
I have a tumour and epilepsy and don't find the phrase you mention (won't use it in case of offense and besides I can't affort the surcharge lol) because it's a true statement though of no comfort what so ever and have to admit to using it myself.
The ones that do grate, a lot, some of which have already been mentioned here in this thread, 'we ALL do THAT', 'you're looking well', 'my friend had a three brain tumours and they whiped them out and they're fine now' (I wish, diffuse tumour in wrong place = no removal), 'they do such wonderful things these day's, they can work miracles, you'll be fine'.
When the 'well why can't you?' and the 'just push through it, I do when I don't feel so well' from someone with a headache or flue and no BI.
I think I've said before on here that I don't wish anyone harm but I do wish that I could give them my problems of a 'bad' day and the uncertainty of the future that I constantly have to live with, just for the one day, so they could at least get some insight into my problems and see it through my eyes and as everyone here sees life.
God that's a depressing post! Sorry raw nerve day.
The beauty of this forum is that when people here tell you about their memory experiences and fatigue etc. etc. you know that they actually 'get it' and really know how it feels.
Still the sun's shining here and it's a chill out and relax day so I'm off to get a tan or is that a rust stain.
Stay well and get rich. Can I claim 10% just for being on this forum?
Geoff
Hi Geoff,
I agree that the brain is way too complex a circuit board to have total knowledge of-even the experts will admit such.
I suspect that 'pushing through' a bad illness may well have landed me here in the first place so trying to avoid doing that one again !
And yea,the first time I learned of your condition I realised what it must be like to live with uncertainty-I have had a one off episode and the only way is ( hopefully ! ) up for me-this helps me to put my issues into perspective.
On a happier note,my unwilling to eat much pooch has a clear abdominal scan and bloodtests,vet has started her on anti sickness tabs to see if appetite improves-thinks it may be connected to an inner ear infection.
Am considering selling my body to fund her phenomenal treatment but afraid I will have no takers-not even I want my body some days ! !
Fingers and paws crossed for my girl : )
Take care and post photos when you are a bronze Adonis !
Angela x
Wow! Thanks everyone for sharing so much,it is sad to read about strained friendships etc,I can only hope that some information gets through to people, that's partly why I have done and i am still doing research, so I can understand hubby and his problem s as best I can,bleesed be all of you xxx
P.s ten per cent is you'res sporan
Thank you for the 10 percent, can I have it in gold as gold holds it's price better than cash lol 
It is sad to read allot of these posts,but I know I have said it before I think you are all fantastic! And get out and about as much as you can I know how cruel people can be but hey sod them! Pound please non understanding people xx
It upsets me when I read all your comments about us family! I don't mean you are upsetting me, I mean it upsets me that we fail to get it right! Both my parents have had SAH's and. I really try to make sure I am not being insensitive, but I probably do it without intending to! The suffering is on both sides and I hope my mum doesn't think I don't try really hard to understand, I know I will never fully understand your experiences, as I am sure people will never fully understand my experiences as a relative
Hi Lubilu01,
I agree with angelite when she say's that we are refering to passing aquaintances, people we know and more distant relatives.
Close family, certainly mine, usually see and can understand much better what we are going through.
I very much feel for my lovely wife as she has had to take up the strain of both my emotional and financial support as well as coping with the day to day chores that I often am unable to do on bad days.
As for saying things that may upset unintentionally, well to quote a phrase I earlier mentioned as me hating, 'we all do that' from time to time.
I also find that part of the BI thing often involves sudden emotional swings which in my case can make me quite snappy and irritable over stupid things that shouldn't really warrant any response at all.
Don't feel bad about expressing your emotions, after all it's all part of what this site is about supporting not only fellow sufferers but their familys as well.
Love the smile. Oh and by the way hows Andy Pandy and Teddy doing?
Take care
Sporan
Please don't be upset,Lubylu,
If you scroll back up you will find that we are talking about acquaintances,neighbours and friends that we see occasionally rather than close family. Our loved ones are best placed to understand as they see our problems on a regular basis and know what we were like before the injury. As Strawberry pointed out,the nature of our injury can also magnify our emotions and reactions sometimes.My family are great and I have a few neighbours that are also lovely and accept me as I am.
Yes,you are right,we as the injured have lost/changed some abilities but our families also have to come to terms with the changes in the person they knew.
Angela x
And if I had 50p for every time people have said, "Oh! you won't remember that 'fiver' I lent you then!" I wouldn't miss the massive cut in salary I had to swallow when I was retired on ill health from the fire service, and was so lucky to get a minimum wage job! AND I HAVE TO LAUGH! But the giggles are wearing thin, I am probably gong to choke one day!
I think the problem is with friends and acquaintances they seem to forget that, of course and entirely logically, they only see you when you are (relatively speaking) having a good day. If I am too fatigued and having trouble being sensibly coherent, I don't go out. To avoid getting to that point, I rarely spend more than a couple of hours with people - by then I get a bit la-la. If my legs are on a really wonky stretch I won't be out and about. Ditto if the vertigo has kicked in. So 'you look well' I usually respond to with something along the lines of 'not too bad, thanks - much better than this morning/yesterday/last week' because it is good to recognise that some days are indeed 'good' days and it is nice of people to be so encouraging - but equally important to remind them that a big part of my life ain't like that at all...
Good to hear some positive comments keep getting on as best you all can and hey keep chraging! You all rock!
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