Just over 10 weeks ago I was found to have 2 bleeds on the brain and had a successful operation. I cannot speak highly enough of the care I received but as soon as I was discharged I was left to fend for myself. If it wasn;t for my family and friends I would be in a very dark place.
I would like to know if there is anyone in the west berkshire area who has been through something similar, someone who knows what I have been through been, am going through and what the future holds
Hi, I don't live in your part of the country but just wanted to say welcome to the forum and you are not alone in being left to get on with it by yourself following hospital discharge. I had a brain injury with a bleed on the brain and also live on my own, mine was in 2016 and it was incredibly difficult for me just to be able to function properly for a long while and my gp was of no help whatsoever, it's really early days for you and your brain needs to rest as much as possible, i am sure others will respond to you with their experiences and knowledge but also call the headway helpline in the week. If I can answer any questions you have then please do ask.
Take care
Hi Thanks for the reply. Always good to talk to people who have been there. How long did it take you to get back to your normal day to day life? I cannot believe that the lack of after care has been going on for so long and that there is no follow up appointment a few months down the road.I have had alot of headaches since the operation and last week after 10 weeks I went to a and e at my local hospital and had a ct scan which was luckily negative. No one told me that I would be getting headaches for weeks after and that it would make you so paranoid.. This is why I went to put my mind at rest .
You will probably hear this quiet a lot in the coming months but every brain injury is different, you can have 10 people have exactly the same type of brain injury and there will be 10 different outcomes, sorry to disappoint you but your normal day to day life may not be possible to get back to again, another common saying with survivors is the new me. The person I was pre injury has gone forever and I am the new version of the old me, headaches I still have almost every day, cognitive impairment problems, balance issues, there is so much you need to learn about the brain, it does not recovery like any other part of the body. When I was discharged from hospital I thought that if the hospital has discharged me with know help or info then I will be alright in a couple of weeks, how wrong I was. Read as much as you can about brain injury and listen to people on this forum because that's the only way to learn about it. You may well be in for a really huge struggle in the coming months. Please don't expect it to be a walk in the park for you because it wont.
I remember chatting to my dr and she was giving me the impression that she wanted me to go back to work 3 months after I had the operation but was going by the average person. I have no intention of doing this and know that everyone is different.It is very reassuring to hear what you said about the headaches as no one tod me what to expect and I have been so paranoid from day one. one of the few bits of advice I was given from the hospital staff was to always listen to your body and If need be go for a lie down. I am taking each day as it comes and go from there and no there will be plenty of down times x
Hi Ginola. I'm in the NW but that shouldn't be a barrier here on Headway.
I had a Subarachnoid bleed in 2011 and spent almost 3 months in hospital whereas (according to your profile) you were hospitalised for only 5 days - very different protocol I guess.
It's a common story here that brain injury aftercare ranges from poor to none-existent, and despite a longer stay in hospital I had the classic emotional and fatigue issues together with short term memory problems and poor mobility.
Please don't worry that the fatigue and other symptoms are unnatural ; they're absolutely par for the course after any form of brain injury. Even after a month I was still bedridden, taking regular pain killers and drinking copious amounts of water ; I certainly couldn't stand, let alone walk.
I also worried about a repeat bleed after returning home, but at my follow-up my surgeon told me I should consider myself no more vulnerable than any other healthy person.
Coming back from this is a very long process and there will be long term consequences. My family were warned I'd never be the same, but I'm independent and manage my own chores, gardening shopping etc., and life is better than I expected.
If you feel you need more medical help you could do what many of us do and ask your GP for a neuro referral ; it might take a while but can be very reassuring in ruling out serious issues. Also, phone the Headway helpline on freephone 0808 800 2244 for advice and support.
Rest and sleep whenever needed : take short walks, eat healthily and avoid alcohol. Most importantly, drink at least 1 & 1/2 litres of water daily to keep your brain rehydrated, especially in the hot weather.
And stay in touch ! See you again soon..... Cat x
I agree with cat3 that calling the Headway helpline is a really good move. You could check with them to see where your nearest local Headway group is. I go to my local group weekly and it has been very helpful to me.
I wish you all the best. 🌼
Hi Cat
Many thanks for the reply. When I hear about what other people have gone through it makes me realize that I was lucky to have been in and out of hospital in 5 days and be where I am after 10 weeks without no after care. I always knew that the mental side would be so much harder especially as I live on my own. It has certainly been a rollercoaster ride of emotions and will continue to be so as the mind is very powerful. One of the hardest things is losing your independence and having to rely and other people. This is why i cannot wait until I am able to drive again fingers crossed.
steve x
Ah yes ; I remember all too well the wait for getting back behind the wheel and the frustration of relying on others for getting around.
I saw your comment about your GP wanting you back to work after 3 months ! ....shows just what little understanding she has of brain injury 😕.
Stay around Steve ; it helps being able to talk with folk who get what you're going through... x
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