Hello everyone hope u are all okay, will I finally got a doctors appointment today after waiting for two weeks he said to take Paracetamols for my on going headaches and Referred me to Neurology so just sit and wait. Does anyone knows if there is a group I could go to ? I can't help feeling so Depressed and alone with what has happened from my Accident which was April this year I have found it so hard to talk to anyone when they don't understand what u are going through. I know it sounds silly because I look ok they think I'm fine, tryed talking to my boss at work to see if there was any help but he was not very helpful I'm still getting mixed up with my words & my Memory not that great forgetting thing's very Frustrating.
The other day I went shopping I pick up some wipes got home put the shopping away and went to use the wipes open it up to find that I pick up nappy bags I went mad and lost it I threw them across the room screaming and then I burst out in tears .After I calm down I just felt what is happening to me , I laugh at it now is this normal??? 🙄x
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Tula1276
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Hi Tula, Sounds spot on, frustration, distress, laughter. It takes time for emotions to settle and to adapt to different ways of managing things.
If you find that you are finding emotions difficult, i.e swinging from one end to the other extreme, it might be worth checking in with the rehab team, or your GP.
Also you ask about groups, on this page, there is a link to contact Headway helpline, they can talk you through any questions you may have. They will also be able to advise you about the Headway service nearest to your area. The day service will give you the opportunity to to other survivors, plus it is a safe place to just have fun with people that understand.
Yes the headway groups are excelent, I go to one in Torquay and we have a quizz with another group in birmingham, it is great fun, join one, it would be good.
Absolutely classic symptoms of brain injury Tula. The emotional lability is still occasionally an issue for me even after 9 years, but in the early days (you're in very early days) my moods and emotions were all over the place !
I'd definitely phone the Headway helpline ; the staff can provide you with printouts explaining brain injury after-effects and can tell you where your nearest Headway group is. Many folk here rely on their local group for contact with other survivors who 'get' their issues. The tel.no. is freephone 0808 800 2244.
Hi Tula, sorry you are going through this, it is horrible, yes there is help out there but not everyone understands about brain injury, unless you are a sufferer, not everyone knows how to handle it, not even the neurologists. Your doctors surgery should be able to refer you to some kind of counselling, each nhs region has its own set of services, here in Devon we have talk works for example, just talking it through with somebody like that may help. Also depending on what is causing your problems, headway themselves or in my case, the encephalitis society are very good. Then of course you have us, we are probably the most understanding group you will ever find so just talk to us!
As for losing it, it does help, to lose it sometimes, it can be very frustrating when you need help but often find that you are hitting your head against a brick wall, again because of the lack of understanding and tollerance by those who don't know how to help us, if it is hard for us, it must be harder for them because they don't know how to assist us.
Where I live the management don't make any effort to understand my brain injury or visual impairment so it really frustrates me. I have got to the point that I don't try to make them understand, I go to people like those on here who do know what or how to assist us.
Sorry for a long waffle but just wanted to say it is ok, we all go through it at times, take care.
Hi Tula. If I had a pound for every person who's said to me "well, you look OK" I'd be very rich by now.
This also happens to a dear friend of mine who's under Papworth hospital, but her illness isn't 'visible' so she gets challenged by people when she uses her disabled badge to park and friends often tell her that she looks fine.
How does making the comment "well, you look OK" help anyone who's seriously but not obviously unwell? Answer: it doesn't. But it demonstrates that the person making the statement doesn't know what to say to you or how to deal with your situation so they say something really flippant instead to fill the space, often without realizing how unhelpful and counter-productive that is.
Ignore the silly comments, take the sound advice offered by those on this forum who've been through your experience and just take it one day at a time. NHS appointments take ages to come through; I've been under the NHS for a head/spine related issue since last September and it's taken over 9 months just to have 2 scans delivered. Be prepared for a long wait, take the paracetamol as directed (it's safe) and remember that you are not alone.
Its normal and requires more carefulness and lists to check off which allows one to double-check correct completion of tasks. You'll end up feeling better with successful completion of the tasks. Like for me, it will take longer, but, I, anyway, am not in a big rush.
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