Feeling alone with just my thoughts

Hi, My name is Leon. I'm 32. This is the first time i've posted anything on a site like this. I just wondered if there are people on here who have a hypoxic brain injury like i do.

I got glandular fever in 2010 and while in hospital lost my airway for 40 minutes. It has left me with a number of problems but i'm only just realising just how many there are. I have problems with memory an concentration. My emotions are all over the place. I get really stressed in lots of situations now. I don't have broken bones so you can't see my injury. My problems are inside my head and they have changed my day to day lifestyle. The way I think has changed significantly. I find it hard to control my emotions and sometimes I act differently. I'm still the same person inside and still like to have a laugh. I just can't do some of the things I used to as my brain won't allow it.

However much I try to explain my problems to my friends they don't seem able to understand and that leaves me feeling alone.

33 Replies

  • Hi Leon. Welcome to this forum. I am sure you will soon feel it was a good idea to give it a go as everyone is very supportive, understanding and with lots of helpful ideas/advice/suggestions as we are all trying to manage our lives and live with BI. I don't have a hypoxia BI as my was caused by Meningitis but your post could have been written by me as I can identify with all the problems that you have written. As you rightly describe it is an invisible disability and because friends, family and other people can't see it they don't acknowledge or understand the difficulties you have. Even the medical profession struggles to understannd. Were or are you being followed up at all and inparticular had a neuro psychological assessment the findings of which would confirm and verify the problems you are experiencing? It may also be useful to contact the Headway Helpline as they can send you information about your BI which may be helpful to you but also help your friends understand a bit better should you want to share it with them. Please do continue to post with us as virtual friends.x

  • Yes, the NHS were use useless with their follow up and seemed to have forgotten about me but luckily I made contact with a neuropsychologist who actually listened.Thanks for your reply

  • Welcome! Your best bet would be Negeen, she has a hypoxic injury too.

  • Thanks for the advice.

  • Ok thank you very much for that advice.

  • Hello, Leon. I've just joined the site, too, and it's been a positive experience for me so far. I have acute demyelination of some nerves in my brain, so my injury isn't quite the same as yours. It is an invisible injury, and it is very hard for people around us to understand. I have sometimes found that they do not try and understand, with is disappointing and isolating. Good luck, Rachael.

  • Thanks for your reply. It's nice to be on a site with people with brain injuries who experience problems like myself - like people seeming to find it impossible to understand.

  • Hi Leon, I don't have the same brain injury as you, but like the others have said we all understand on here. Im trying to say more but brains on a go slow yet again! T care.K

  • There is a wide range of brain injury types on here and it seems the commonest denominators are memory, concentration, and emotional issues amongst many, many others.

    And despite our waking each morning to face another day of difficulties there are few, if any, visible signs so understandably others don't 'get it'. Even those who were involved with the anxiety of our illness at the time, become blasé once we appear to be functioning normally again.

    It's understandable when you consider how most of us don't seek out problems ; we only involve ourselves at times of necessity. It's part of human nature to avoid scratching the surface in case it makes extra demands of our time & patience.

    But there are like-minded folk here who know how isolating brain injury can feel and who are always willing to listen and understand.

    So welcome Leon ; I hope you'll find the support you're looking for amongst us here.

    Best wishes, Cat x :-/

  • Thank you very much for the nice message. It's good to see there is support out there.

  • Hi I have not had the same brain injury as you had a anerysm as well as other problems I sill have the same problem as you people can't still see my unseen disability they look at me I look ok nothing is wrong with me work is the worst even though it happened at work that was over 5 years ago Don't worry we know the truth even had assessments which has confirmed my problem keep smiling if you can

  • Thanks for replying Clive. Will try to keep me head up, hope you will try to do the same.

  • That's ok Leon if you need to chat anytime will try and give private e mail address look after yourself can understand your problem 100%

  • That's ok Leon if you need to chat anytime will try and give private e mail address look after yourself can understand your problem 100%

  • Hi Leon, welcome to those of us who suffer without any physical, external signs. The anxiety, memory loss, lack of concentration and trying to control the mood swings in public comes together with all brain injury. I believe mine was due to starvaton of oxygen too; Pnumonia and Bronchitis many times as a child (aged 2) and again as a 38 year old; but the 140 mph crash did not help either. Who needs brain cells anyway ... they replenish themselves, unlike the popular old-wives tale that says they die off as we get older. Your brain storage capapcity actually improves with old age, it is just your short term memory that fails more from the age of 20, and then dramatically every 20 years. Ask any Octiginarian to recite stories about their childhood, they will probably tell you what coulour sock the whole class were wearing. An excellent video was posted on the forum recently showing how some young people were coping with there respective brain injuries vimeo.com/63148348 ... Well worth a watch, and it only lasts about 12 minutes, if you remember!

  • Thanks for your reply.

  • Hi Leon,

    Welcome along to our little community, you've come to the right place. Put your feet up, have a cup of tea.

    No hypoxic injury for my good self, but just a run of the mill 'severe brain injury'. It's left me with a range of problems, many of them similar if not the same as your own. Emotions, anger, memory, etc, etc, it all applies to myself and I think most of the users of this site.

    From my own reasonably extensive use of the site I've learnt two things.

    1) Ask anything you like, inevitably somebody will come along to your aid, you'll soon feel at home.

    2) Always listen to Cat, she doth speak sense :)

    Best wishes to you,

    The Baron/Andy

  • ;-) xx :-/

  • Thank you very much for the advice. I can already see that this site could help me deal with my problems to the best of my ability.

  • Hi Leon.When we experience a traumatic event,what we have is a new individual behaving and reacting differently than before.It takes time and patience to adjust our life to a new situation and in some ways is quite frightening at the beginning...especially if friends and relatives avoid any contact because do not recognize the new person in front of them.I recovered in 2 years after my BI living having flashbacks and palpitations.I was so scared to go out and my friends just abandoned me.It`s not just the environment that change around you, but is the label people will put on you as not functional any more.Changing environment helped me a lot and now I am more focused on what I was dreaming before the traumatic event.When you leave a place where ignorance , stereotyping and gossip had destroyed your dreams,you realize that life is not at the end,even if our journey is more difficult.Living in another country different from my birth place was a bit challenging at the beginning, but then even if more complex as society is also more resourceful and able to deal with different aspects of an invisible disability.I have this kind of cognitive fatigue and if I have to read a long article,bear in mind that I am studying Psychology,it become quite difficult to maintain concentration and memorize what I am reading.Also English is not my first language and learning about professional jargon is a bit daunting sometimes, but I keep going because I feel motivated and I like what I am doing.I am also a volunteer for different organizations and when I mentioned that to my UNi classmates they looked at me puzzled and I was too looking at them..they really want to understand human behaviour?Maybe they were thinking that is enough to get a good grade ,but the essence of every experience is in the story that each individual can tell,not just books and theories.Take care Leon we are here for you too ,all in the same boat.

  • Thanks for your reply. Glad you are doing better now.

  • Hi Leon

    I Emma 33 years young mine wasn't a hypoxic injury either I suffer severe head injury after sleepwalking acrobatics went wrong 5 mths ago

    I identify with all of your symptoms the most upsetting is that I struggle to read people and also struggle to keep my temper when provoked I accept my seizures blackouts vision and hearing problems but the ones that directly effect other people disturb me

    Anyway just wanted to stop and say hi and let you know you are not alone in your suffering I have been on here at 2-3 am unable to sleep and there's been somebody also awake and kind enough to respond

    Take care

    Emma x

  • Thanks for replying, Emma. It's always good to hear from people with similar problems.

  • That's ok :)

    Hope you are feeling slightly better

  • Welcome we have different stories, medical history, but we share much in common. I had relatively minor injury but has had major impact. I try to accept people without brain injury symptoms will not understand. This community helped enormously with that. Agree with The Baron re Cat and Andy himself is a bit of a guru and brilliantly funny too. Laughing helps so much. And being able to rant and offload where people understand is fantastic too.

  • Thank you very much for your reply i'm already feeling more at easy on this site with people being so laid back always good to feel your not alone.

  • Hi Leon, mine was a brain abcess/craniotomy but reading everyone's comments will help you as they understand where you are coming from in different ways.

    Also its true after a while everyone seems to think you are ok again but my tolerance for being patient is even worse than before all this happened!!!...and not forgetting being even more outspoken which a lot of people don't like but there problem not mine if they can't handle it:))

    You will get really good days where you start to think "at long last" make the most of these days it helps when you are having a not so good one.

    Its like most have said from the outside looking in nothing looks wrong!!!!

    I don't comment very often but still like to have a read what people have to say on a daily basis and occasionally I will comment like I have today and it's true about what Cat mentioned earlier about a brain injury making you feel isolated but remember you are not alone:)

  • Hello gabimou , sorry but hooray I've now found someone else on here who has had brain abscess , I was beginning to think I was the only one !!!!!!! I also at one point thought I was the only one with a shunt , but have since found several on here , do you have a shunt ? . And hello Leon welcome to the site , I to read this everyday and only comment now and again , but everyone on here talks sense to me x

  • Thank you for taking the trouble to reply.

  • Hi Leon

    Welcome and as you can see you are no longer alone. There are lots of us who can empathise with the lack of understanding of the unseen disability. headway have some good leaflets which explain the hidden aspects, they can send you them if you ring them.

    Truth is some people just don't get it no matter how hard you try to explain it. The great thing about this forum is that everyone is so accepting and understanding of each other.

  • im feeling more relaxed with this site with every message i receive. That second paragraph really hit home for me so thank you for replying.

  • Feel free to message me. I have the same type of brain damage.

  • hello leon hows it going now

    better i hope for you

    a full year on

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