When I was discharged from hospital after my TBI last year it felt like I was being thrown onto the street without being given any information at all, unfortunately like lots of people's stories I have read on here I have been left to get on with things and unless I speak up and push I never get anywhere further forward...
I have had to adapt so much and now live with many things I never dreamt I would have to live with.
My life feels like it has been picked up by a strong gust of wind and thrown back down to earth with a massive crash and I'm now left picking up the pieces.
I feel very alone as my so called loved ones don't understand, they think because I look "fixed" then I must be fine...
My cousin who was like my sister was the first to let me down,
She insisted that on my discharge I should move in with her and she would help me recover, only that wasn't to be and only lasted about 2 weeks before she had had enough and I was thrown out for being difficult and ungrateful, all I was guilty of was needing to sleep most of the day and night instead of wanting to go out and have fun with her I also changed my mind and decided instead of going to a children's party with her I wanted to stay in the quiet & see my partner. Anyway I had no choice and had to return home where I would be alone all day due to my partner needing to work to keep the the roof above our head. As my cousin had dealt with my discharge and assured the nurses I would be fine I missed out on so much aftercare that I should of received from social services. I was home alone all day every day and the only way I could get about was on my hands and knees as I couldn't see and was constantly dizzy, I had a fracture at the base of my skull and until I left hospital I could not lift or move my head, my left hand was broken in 3 places my left leg was in a tremendous amount of pain and didn't work properly and even my knees hurt but that was the only way of moving around. My bathroom is downstairs & my bedroom is upstairs, it was horrendous.
My oldest childhood friend has also let me down very badly indeed, just because it has been almost a year doesn't mean I'm over it all now and I'm just making it all up. Anyway at the beginning when I was in hospital I thought I was going to be fine and I would be back to my old self in a matter of weeks, how wrong I was...
I haven't been able to return to work, I rely on everyone for everything, I can't go anywhere without my wheelchair, I've lost my independence and life right now sucks.
I was 40 a few months after it all happened and instead of all the fun things I had been planning, I ended up buying myself a wheelchair, how crap is that.
When I was in hospital I kept complaining about my sight and hearing and was told it would be fine. I have since then been diagnosed with a nystagmus and a tracking problem in my eyes as well as having double vision, and now wear glasses and take medication as for my hearing I had 2 hearing aids fitted yesterday because my hearing never completely returned all because of the massive impact my head took. I am still finding new problems due to my TBI. I forget everything these days and get very confused sometimes, so much so that I got lost not long ago at a hospital appointment, I took the lift to my clinic only the lift didn't move even though I was sure it had, I never noticed and walked off down the corridor to the clinic that now had been moved, or so I thought, I finally asked a member of staff where the clinic had gone, even when she said it was in the same place I was adamant and got quite upset, by this time I think maybe she had realised what I had done and walked me back to the lift it was only then that the penny dropped and I burst into tears because I felt so stupid.
I don't remember what happened to me the day of the accident I only have what people have told me and my brain just can't and won't accept it all, people tell me it's maybe better that I don't remember a thing but let me tell you this much, I went out of my house that day and I remember I was me and ever since that day I've been waiting & hoping for me to come back home again and somehow I need to make sense of it all. I'm cross and very frustrated and if I'm none of those things then I'm a crying wreck in 10/10 pain in the whole of the left side of my body but particularly in my left leg because as of yet I still have no pain relief that works for me and it's just hideous.
Tomorrow I'm off to have a neuropsychological assessment, hopefully that will shed a little light on just how bad things up there are. God I've most probably bored you all but I just had to bloody get this all out and to know that whoever reads this understands what I'm going through makes me for once feel a bit better. Thank you to anyone who takes the time to read my life story to date...
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dora21
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So sorry you had need to join us but so glad that you found us...you are definitely among people who understand and I fully expect pretty much all of us will identify with at least some of your experiences.
The road to recovery can be long and a bit bumpy at times but there are people along the way who will lend and ear, a shoulder or a helping hand along the way.
Hope your neuropsych assessment goes well ...don't be surprised if it wipes you out by the end of it... its like gymnastics for the brain and can be tiring... I slept for four straight hours when I finally got home after mine, but it was useful and gave a fuller/more detailed picture of what was going on.
Hope you will come back and let us know how you get on...
Thank you so much for your kind words. My appointment with the neuropsychologist lasted about 7 hours in total today with a few short breaks, it was like being back at school... Forgot loads but I think it went well, just have to wait for the report now. Will let u all know as soon as I find out x
Hello Dora.
What you have written is doubtless a story that many of us on here - especially with injuries 40+ years back - can identify with. There was no back-up once you had the op and immediate care.
The sad thing is that once brain injured your personality generally changes - all text book stuff you never get told.
Sleep, depression, forgetting things are like text book. The most hurtful is the loss of friends and family who don't want to know - again, it's textbook.
About forgetting things: use a notebook; state day date and time of an entry. Worked for me and the other victims of TBI who suggested. If you want to sleep - do it and if you want help from the medical wallahs try to get referred because its generally known that GPs know very little about TBI and the needs of those who have experienced it.
Yes you are so right about the hurt of loosing the people you thought cared about you but, ultimately even though it is very painful to loose them, life is better off without them in it in the long run I am finding out. There isn't many people left that are important to me these days but, the ones who do still visit/call or text even just a "hi how are u doing" are the ones I will hold onto very tightly!
Thank you for the idea of a notebook, I do now have to carry a diary around with me everywhere I go to put all dates and appointments into so I don't forgot things. And my new psychologist said about having a daily/hourly week planer stuck up somewhere I can see for everyone in the house to use, we have different coloured pens for different things, I'm getting better at using this!!
As for the sleep thing, I think I'm too hard on myself as when I'm tired during the day I feel as if I'm just being lazy and should have more energy to do things, I hate the fact that my partner works all day and has to come home to do all the things I once used to whizz around doing. That's why my nickname is Dora, it's because my partner used to joke that I was like Whizadora whizzing around everywhere looking after everyone. Long time now since I've whizzed anywhere! But it's ok I'm just starting to learn I have to listen to my body and not be so hard on myself. It's so good to know I can come on this site and offload to people that understand how tough every single day can be instead of leaning so hard on my already worn out fed up partner.
Yes yes and yes again, I fel like that, my friends drifted away like that and my family struggled to understand.
I spent a long time trying to be the old me. It never happened but what did happen is that I was able to take what I have now and use it to its best ability.
My home has signs everywhere like have you locked the door? Have you turned the cooker off? Etc. I have a calendar in the kitchen and lounge and bedroom. I use a diary and a weekly planner. I have a fridge covered in appointment letters and important things stuck on with funky magnets.
I turned up at hospital for my ent appointment and got lost...I was in the wrong hospital! I've turned up on the wrong day, the wrong clinic etc. yes it's hugely embarrassing and frustrating but hospitals are very confusing places to navigate.
I was very much lsolated and angry when I first went to headway. They were grate and even tho I was tired out after my visits I started to feel better just talking to people on my level. It was through them I got help from the abi social work team too.
It's not good that there are so many of us that feel this let down by friends and family but its a comfort to know there are people here that understand my feelings so I can stop being so upset and talk to you guys! I also don't feel so bad that I'm not the only one to get lost in the hospital that is now basically my second home! I too have a diary that is now my lifeline & a planner that I'm getting better at using & getting others to write things down instead of telling me & expecting me to remember days later...
Hi Dora21 , You are not alone I understand all you have written down especially some family and most so called friends a few friends visited at first now none !!!!! I think they think I ok now I home, but I still need chats etc . I so glad for the support my husband and daughter give me and my icusteps support group I attend once a month . Otherwise I'd be indoors on my own most of the time as I have to be having a good head day to venture to the bus stop alone . I had pneumonia twice in 2012 and then developed abscesses on my brain for which now I have a shunt in brain for drainage and also had 2 seizures !!!!!!! Come on here for chat when you want good luck x
Thank you for taking the time to read and reply to my post. It's such a shame that some people are far too busy to take the time to understand about head injury and that even though we may look fantastic on the outside that's not the picture on the inside... My house is very remote and I only have the one neighbour, we are in the middle of nowhere which was fine until my accident,now being housebound without any visitors during the day is pants. Apart from trips to hospital or the like I never go anywhere and I've now all but become a recluse. I don't even want to go anywhere these days as it's simply such a hassle.
I hope your recovery is going well & I'm sure now I've taken the step to post on here I will become a regular!
Hey Dora, I live on a farm in NE Scotland. It is about 6 miles to nearest shop, we have a bus at 830am into town and back at 420pm it's the school service. My neighbour is a field away from me. I turned into a near hermit when I couldn't drive and like you only went out to hospital appointments. I enjoyed the peace and quiet to be honest.
My headway had a minibus that collected us and dropped us off, even though it made days out longer it was worth it!
I read your article don't worry its not unusual you need a carer preferably your partner a member of your family or a friend who can help you I have been doing this for my son martin since he was discharged from hospital in 2001 after 2 years treatment.
he has gone through all the situations that you have plus many more but is hopefully getting back to work soon its been a long haul but very gratifying, our experience with social services was patchy but there should be a carers centre near you who should be able to get you access to direct payments so that you can employ your carer
good luck and contact me if you need any more advice
Thank you for taking the time to reply to my post, my partner is I suppose my carer, but unfortunately he has to work during the day, that's when it's the worst, there is so many things that are supposed to be happening but as I'm sure you know nothing ever happens over night and every day my pain level gets that bit harder to cope with, waiting for this that or the other to get sorted is all very well to the person sitting on the other end of the phone trying to explain to me that the lady who is dealing with my case that I spoke with 2 weeks ago has been off sick with tonsillitis and that's why I'm still no further forward because they don't pass work over... It's a joke, I've been living with my pain since April last year & I'm sure tonsillitis would feel like a walk in the park to this, I feel a rant coming on so I'll stop there as it's not your fault. It's all very frustrating but hopefully, over the last few days I've made so many heartfelt phone calls that maybe just maybe something will get sorted soon. Once again thank you and we'll, I'm sure speak to you again soon. Hopefully with a bit of good news!
my daughter had her TBI eleven years ago. it was horrendous. it has changed her life and mine, as i'm now her full time carer. but things are more settled and better. hang on in there. where are you based? we belong to a charity called silver linings. they're a god send. they are run for and by people affected by head injury. look us up. and come along. there's always something going on. mostly just people to talk to who don't think you're mad.
Thank you for your support. I'm based about 40 mins outside of Cambridge, I will definitely look the charity you have mentioned up and see if they have anything near to me.
Thank you for taking the time to read and reply to my post, it's nice to know that people on here do care and that we seem to all basically be in the same boat. I hope we all find that special light at the end of each of our unique tunnel one day.
I'm having a good day today so, I am sharing my thoughts with you - there is light at the end of the tunnel for all of us - it does not matter that Health and Social cannot help us, because we are all so individual, and that is the point here. Who are we now? Our bodily system has been re-set and our recognition of this fact is shock!
This constant urge we have that drives us to anger and frustration then ultimately defeat - that is the 'me' in all of us that just wants to live!
For me I believe that I am changing for the better, although it is a long and arduous road, the struggle is a real puzzle for the mind and spirit - I am finding my patience and humor along the way, helpful and so by developing these aspects of myself, I hope for a positive future, - just spending the time with yourself, to help reconnect, with the small things in life that made you smile or even laugh at yourself! Switch on the comedy button, once in a while - The lift episode is a classic though, I think most people can relate here, even my 8 year old son in the shops! Just Let go a little, be happy.
I have always been hard on myself and put myself under a lot of pressure - its time to stop!
I'm so glad today has been a good day for you & that you have sent us all some positive thoughts. I like the "switch on the comedy button" phrase you used and when I'm next having a tough day or being to hard on myself I'll try to lighten up, as I'm sure you and plenty of others here will agree, we are the ones that are always the hardest upon oneself and sometimes forget to give ourself a day off from it all.
You are far from alone and I'm sure your story rings bells with most (if not all) of the people who use this site. If you need help, advice, or just to scream and shout, we're all here.
Thank you for sending me a reply, it's comforting to know that so many people on this site do care and are willing to support each other. I do plenty of screaming and shouting during the day when here alone so it will make a change to have someone to reply to my rants for a change!
Glad you've found us Dora. It can take an age to admit to the changes in our brains & bodies and to the fact that we cannot just fight off these new incapacities, but with time and practice it does get easier.
I think the key word is 'acceptance' ...........not something which comes readily to most of us, but essential in the medium--long term in order to get on with the necessary adaptations which allow us quality of life.
I can only add my best wishes to all of this, like Cat I'm 2 years on now and acceptance has been the watchword. I fill my days with hobbies or just watching tv or DVDs, the hobbies help the fine motor skills and I'm lucky I have no pain.my sister rings or I ring her every morning so I have contact and living in the city makes it easier to get places, even of it is by taxi if the weathers bad. The nearest Headway is 2 buses away so I haven't considered them yet. I'm looking forward hopefully to a good summer so I can spend time in the garden, I feel the cold so much more now.
Like you now my husband has to do so much for me but is out at work all day , I try not to be clingy, in fact I've just sent him off for a weeks holiday with my daughter cos they both need a break, hopefully he'll come back refreshed, my daughter doesn't live at home anymore, she's in London, we're in Manchester.
Anyhow, just remember we're here for you as Baron says just scream and shout xxxxx janet
HI, I FOUND YOUR STORY VERY VERY CLOSE TO MY HEART, AND MIND. YOU POOR THING. I KNOW EXACTLY WHAT YOU ARE GOING THROUGH. NOW AT 43. WHEN I WAS 16, NINE DAYS BEFORE MY 17TH BIRTHDAY, MY LIFE WAS JOLLY. I HAD A BOYFRIEND, WAS A POPULAR SENIOR IN HIGH SCHOOL. I WAS IN MY SECOND WEEK OF HIGH SCHOOL WHEN I HAD A VERY TRAMATIC BRAIN INJURY, AND TWISTED MY BRAIN STEM. I WENT INTO A COMA FOR MONTHS, AND ON LIFE SUPPORT (TRACHEOTOMY). I WENT A YEAR TO RE LEARN EVERYTHING. I EVEN HAD TO WEAR A DIAPER. I WAS LIKE A BABY AT 17:! I WAS LUCKY MY INJURY HAPPENED WHEN I WAS YOUNG. STILL TO THIS DAY, 27 YRS LATER, I STILL HAVE PROBLEMS, BALANCE, MEMORY. WHEN YOU HAVE A TBI, YOUR LIFE CHANGES FOREVER. WHEN I FIRST HAD MY INJURY, WHEN I WAS RELEASED FROM THE HOSPITAL, I TOO WAS DESERTED! PEOPLE JUST DON'T KNOW HOW TO ADJUST TO THE NEW YOU. DON'T BLAME IT ON YOURSELF. I COULD WRITE A BOOK! GET BACK WITH ME, AND WE WILL CHAT. I AM IN OHIO, WHERE ARE YOU? JENNIFER
Thank you for your reply, I've just sat and read your story and can't believe just what you had to go through all those years ago... I can only imagine how hard it must of been to re adjust to your new life post TBI.
I live about 40mins outside Cambridge, England. Would love to chat more
so called loved ones don't understand with you there and like you after leaving hospital nothing seems to be in place to help people make sense of the world that has changed from our perspective and spend a lot of time chasing our tails and getting now where
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