Hello 💕

[Lisamarie27]

Hi my name is Lisa I’m looking to chat to other brain injury sufferers. I have a gene mutation which causes my brain to swell..... but other than that I’m completely normal 🤣 💖

[LukeB]

Hope you're ok x

[Pip70]

Hi there! My name is Kate I have Congential brain damage which until 18-24 months ago had no real effect on my life and I was able to live a 'normal' life and it is only recently that I have considered myself disabled and took ill health retirement from my NHS staff nurse job because of the effects of my brain damage! Kate 😀

[Lisamarie27 in reply to Pip70]

Hi, it sucks doesn’t it don’t know bout you but I’m sick of feeling “special” lol how are u doing now? Xx

[Pip70]

Yes it sucks all right! I have been through the 'mourning period' for my old self and I'm now trying to get on with my new life and make the best of it good days and wheelchair days it's not easy though...if you need to talk feel free to message me Kate 😀

[paxo05]

Hi Lisa and welcome to this forum.

You say other than your problem you are completly normal. ........mmmm think you should fit in although most of us have given up on normal...It's boring anyway.

Chat away. Ask away. We may hopefully be able to help and all learn along the way.

Sorry for sounding a bit out there my pain med are up at the moment. Non normality will resume shortly.

Pax .

[Lisamarie27 in reply to paxo05]

Haha I wasn’t ‘normal’ before my issues and I’ve had encephalitis four times so I really don’t stand any chance 😁 and your quite right normal is very boring xx

[sealiphone]

"I feel like letting my freak flag fly" (D. Crosby). Can't stand him but I embrace the lyric.

[cat3]

Hi Lisa. Hope you're doing OK at the moment ! Cat x

[Lisamarie27]

Hi cat I’m doing ok how are you? X

[lcd8]

Hi LisaMarie. I'm Lulu and I was born with my condition as well. I have an abnormal tangle of blood vessels in my brain called an Arteriovenous Malformation. I am very fortunate and don't seem to suffer many everyday deficits. Although both my short-term memory and my balance are pretty bad. Does your condition give you any day to day difficulties? How did you find out about it?

x

[Lisamarie27 in reply to lcd8]

It does after this attack but I guess because I’m older and have three children I don’t get much rest time. I underwent genetic testing and this is what they came back with. My younger sister also died from it xx

[lcd8 in reply to Lisamarie27]

Oh no. Sorry to hear that. Must have been devastating. I know what you mean about not getting much rest time though. My life is hectic too because I work full-time and have 2 children. I'm trying to find things I can do to get a little more relaxation in the evenings. I thought maybe I would try yoga.

[Jaxs050783]

Hi Lisa,. this is a cool forum.

Hope your doing well!

Tony

[Mufc]

Lisa hi. I use to be a nurse to. You have to accept the new you and enjoy the things you can do. I had my accident in 1998 and have only just accepted the new me. It’s really hard to accept you will never work again. I have physical disabilities to so I will never work again.

Mufc

[Lisamarie27 in reply to Mufc]

It’s hard too accept as my last attack was wen I was 17 and i worked so hard to get a good life. I was driving, House, children I was happy and settled and then out of nowhere this! I’m a bit bitter I guess x

[Mufc in reply to Lisamarie27]

I understand I am bitter as due to my brain injury I am not allowed to drive which I miss the independence. I hate having to ask someone to drive so I do not get to go independantly where I want to go.

Also I use a wheelchair when out so I have to make sure places are acceptable for wheelchairs. I’ll stop moaning now.

Life does improve I am told😟

[Lisa-Marie70]

Hi Lisa-Marie27 I'm a Lisa-Marie too!

Ive just joined today. I had a tbi in 2013 and developed Hydrocephalus and have a vp shunt. I then developed encephalitis in 2014, not worked since 2013, I was a Psychologist with an active full life. Now friends have dwindled away, Im fed up of trying to be the same as I was and having gone through the whole range of emotions from denial to anger to this point where I'm ready to meet others and start to accept whats happened and again live a full active life just in a different way. X

[lcd8 in reply to Lisa-Marie70]

Good for you Lisa-Marie. I suffer from Hydrocephalus too as a result of my AVM. This is how it was discovered - when I was 14. I have a VP Shunt as well and have needed 4 revisions so far. I know I am really lucky to have my husband and children. But sadly, like yours, many of my friends couldn't hack it and drifted away. Very best of luck with your 'new' life! x

[Jaxs050783 in reply to Lisa-Marie70]

Hi Lisa-Marie,

Your post sounds very similar to my story with the denial/anger etc.

I feel that a lot of us are reading from the same page!

I also lost a lot of friends from work,uni and social mates.

It’s still hard as sometimes I just don’t want to see anyone yet other times I feel very sociable.

Having my driving revoked didn’t help as I feel like a burden.

It’s like a rollercoaster which isn’t going to end . Up, down round and round .

I sometimes sit staring over the Mendip Hills and I think life is still beautiful.

[Mufc in reply to Lisa-Marie70]

I also want to go out and enjoy life again. I had my accident in 1998. I was a senior research nurse working in London. I know I can never be the same person. I now live in Derbyshire and would appreciate someone to communicate with.

Best wishes

Mufc

[Lisamarie27 in reply to Mufc]

Hello I’d like to chat with you maybe we can help each other xx

[Mufc]

Lisamarie27

I would be happy to chat with you maybe we could be of assistance to each other.

Mufc

[Lisamarie27 in reply to Mufc]

Fabulous how are you today xxx

[Mufc in reply to Lisamarie27]

Feeling as well as can be expected. I realise I need to be aware of the positive things in my life. I could be a lot worse. How are you managing?