One normal evening back in January of this year there i was minding my own business. Dont ask me what I was doing i cant remember. I know its wasnt anything extreme or particulary interesting though..
Anyway, there i was and arrr. I fell down some sandstone steps. Now instead of getting up and continuing as usual it seems to me that i awoke in a world similar to tim burtons alice in wonderland. Except there was nothing wonderful about it. Everything i was before was gone. The crazy, fun energetic woman karen was well.. somebody had stolen her and replaced her with a woman alot older than her 35 years. The world i had known was turned upside down and 5 months on im still walking on the ceiling searching for the floor.
I cant remember the fall, before or straight after. My children have said i was a heap on the floor. At the time it seemed i had hurt my back and my elbow. It wasnt till a while after that silly things seemed to happen.
I tried to speak and words wouldnt come out of my mouth. They were there in my brain but something was clinging to them not letting them out. I would get up to walk across the room and stumble with dizziness, my children rushing to catch me. I tried to watch a tv programme and the tv would spin. What was this crazy world i had woken up to?? It got worse. My daughter made a curry. yummy. My favourite food. My neighbour came in. " Wow, that smells delicious karen." ummm. "what" had someone stuffed cotton wool up my nose? Lets check? Nope nothing there. I couldnt smell a thing. Now 5 months later i cant even remember what it should have smelt like. So there i was. dizzy. confused. slurring my speech. no taste and no smell. I was exhausted.
I was such a strong independant woman before. Now simple tasks made me cry. A month ago i remember going under the stairs to get my shoes out. I have 4 children. 2 girls 16 and 7/ 2 boys 14 and 11.. I have been on my own with them now for 7 years. Once ruby was born things turned very bad with her dad. Anyway... back to the shoes.. I couldnt find them becuase my wonderful children had thrown all theirs on top. Right..Time to tidy it all up. I bent over to pick one shoe up. I just stood there looking at this shoe. It wasnt a pretty shoe. It didnt talk or sing. However all i did was stare at it. Then at the shoe rack. I didnt know what to do. Where do i put it? Oh god. Why couldnt i do it? What was wrong with me? I burst into tears. Mot just tears but huge gut wrenching sobs. Before my fall i could get up, organise all the kids in an hour for school. Spend 2 sweaty hours in the gym, dash to work. Dash to the shop. Dash to pick the kids up. Tidy up. Do dinner, Mess about..pop to the pub. Now here i was standing under the stairs with a shoe in my hand sobbing my heart out. I cant remember what happened next. I do remember my son bringing me in from outside. I had been sitting in the rain apparently in floods of tears. My whole body shaking.
So.. can whoever turned my world upside down please put it back again?
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scrumpy77
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i know my children were probably the single most important thing that kept my fighting
children are stronger than we think, and a lot more astute in some cases
you said
"I tried to speak and words wouldnt come out of my mouth. They were there in my brain but something was clinging to them not letting them out."
i know exactly how you feel and i always have trouble telling people how it is, so i am going to blatantly steal that from you
its still early days for you so emotions are going to be all over the place, things which are reasonable become unreasonable, normality is a distant memory, energy is as depleted as an energiser bunny using cheap batteries
but for what its worth, it does make us better people, and those around us become more understanding and caring, especially our children.
Thank you for your comment bikerlifestyle. The children are amazing. They help me so much. If im dizzy or wobbly or getting agitated they make me stop and sit down. They put up with so much. Must be so strange for them this huge change in their mum. As for stealing my words i am flattered. I found it so much easier to type than speak. The typing flows but the speech does not.
You are so right when you say normality is a distant memory. I keep saying i need new batteries. As well as a new brain. Sadly i am finding my friends are not very understanding. if i had a broken arm or a visible illness i think it would be different. I am trying to pace myself. Not do what I used to at the same pace i did before. My friends get bored of me saying i need to stay in as im having a bad day. But I do have the children.
Hi scrumpy77,
Have been assessed by anyone or told your GP about the symptoms or seeing a neurologist?
I am sorry to hear that you are having such a rough time. I am 36 and like you before my accident I went every where at high speed and then very abruptly my world turned up side down and life was stopped at abrupt holt over the bonnet of a Mercedes!
Much of what you describe sounds very familiar. I tried to carry on regardless when i first got out of hospital, but found very soon that just made me a lot worse. I spent months trying to convince everyone there was nothing wrong with me. My GP was telling me different. I suppose what I am trying to say what I have learnt it is so important to talk about what has happened to you and what you are going through. Headway helpline is fantastic. I go through periods where I have to ring then quite often and often in tears and they are always consistently brilliant, given me great advice but have just listened to me is well. They can also point you in the right direction of where to get ongoing care.
I've slowed right down now and hope one day I can speed up again, but I know now its going to take time.
Yours kids sound great. Let them look after you for a while.
We sound very similar. I did not know headway had a helpline. Just yesterday I was sat in tears thinking i had no one to talk to. No one that understood. I shall seek out the number and try to remember to ring them next time. Which at the moment will be very soon i think. I have started to slow down. I have always overcome everything and nothing has slowed me down so i was determined to just ignore it but i now know I can not. That if I want to get better i need to do things slowly. rest when I need to. I have a community brain injury team consisting of an ot, a psycologist, dietican to help with the loss of taste, physiotherapist. The neurologist says its an acquired brain injury Nothing more specific. That ince the olfactory nerve has been severed it wont regrow so i have probably lost my smell and taste for good. That all the other symptons hopefully will heal. Slowly in time....
Re the shoe incident and being found outside by your son. I was told, if you can and if not get someone to help you, to make a record of those types of events, so you can see if there is a pattern and take the evidence to the docs if you get frequent events. Just a thought.
I dont know if you can read yet. I go through periods when I can and long periods when I can't. My fella bought me a kindle which made it a lot easier. Anyway, I read a really good book by James Cracknell, the rower who suffered a brain injury during one of his endurance events. It basically talks about his recovery. He to lost his taste and smell too. You sound like a fit and active lady and you may enjoy it when you can manage it. Gave me a bit of hope I will get there one day. Until then I trying to accept (failing miserably!) and work with my snail like pace.
I am also learning the emotional roller coaster comes with this journey. Recently we went to Church as our bans were being read for our wedding. Come hymn two my fella started singing and I couldn't stop laughing, a few minutes later I couldn't stop crying. Its going to be fun on our wedding day!
Headway helpline number is 0808 800 2244.
Give them ago. I know you said you not good with the phone, but they are great at letting you take it at your own pace.
Well if you believe in god and miracles it might be worth appealing to 'him' but I gave all that up long ago.
However, I do believe in hope, and faith in oneself to fight and be the best you can be.
You've already had it tough.....working and caring for four kids. But you've been there--done that and still found time for exercise & recreation. So now, as if all that wasn't enough, something came along and upped the bar and you are overwhelmed......naturally.
It isn't what you had planned but life will go on, just differently and more slowly. You must take any help you can get (and I know how hard that is after being so independent) and I'm sure your lovely children will take their turn. My son couldn't do enough for me after my brain haemorrhage which I told him made me feel guilty. He replied that he couldn't describe his relief that I'd survived and that he needed to show it by helping me.
You still have a long way to go in terms of recovery. What sort of medication or therapy have you been having ?
It's still very early days for you to have adapted to this strange new situation but, when the anger and frustration subside it will become more manageable.
Be kind to yourself, and a little bit forgiving. cat xx.....with massive, virtual hug.
I have the community brain injury team helping me every week. They are so wonderful. The occupational therapist is helping me deal with my exhaustion amongst many other things. . As my short term memory is so bad I now have post it notes everywhere. I have a whole range of professionals. Alas the doctors and neurologist werent any help. Sort of, oh well, your taste and smell have gone. Probably for good. Your other symptons are from the bang on yoour head and hopefully will heal in time. All i take is paracetamol and ibuprofen. Every 4 hours since i fell. They do not help though.
I lost my smell and taste two years ago and when I told my GP that I'd read how olfactory dysfunction can often be a precursor to brain tumours and haemorrhages she laughed.
Three months later I had a subarachnoid haemorrhage.
After leaving Intensive care I was transferred to a four bed rehab. ward. All four of us in that ward had suffered subarachnoid haemorrhages . All four of us had loss ,or severe corruption, of taste and smell. I rest my case. ;-(
Oh Karen, this touched a chord with me and I so wish I could put your world back the right way up. I can't, nor can I offer any words of wisdom or advice as I'm in the exact same place as you after my fall last December.
I can, however, say that I really, honestly know what you're going through. I too lost my sense of taste and smell and my world feels so much...smaller now. I don't think anyone can understand how debilitating this can be unless they've been there.
All I'm trying to say is that I understand how you feel, and I hope you can take some small comfort from that {{hug}}
hi 1lastchance. Thanks for your reply. Just finding other people in the same position helps. In the way that I dont feel like a lonely alien. Does that make sense? Probably not. I dont seem to make sense anymore. Things that were simple are so hard. To hard. Making phone calls is a total no. I try and explain to people, please keep things simple. I have a brain injury and get agitated and confused easily. They dont listen.
The smell and taste issue is horrible. Its so unbelievable. I didnt even know that could happen to someone my age. I try not to think of it or i would cry all the time. What i tried to explain to the dietician who comes to try and help is that for me one of the worse parts is that even though it only happened 5 months ago i cant remember what food tastes like. i used to love a warm choccie muffin and a cup of tea. Now, for the life of me i have no idea what it tastes like. I hate cakes, like eating a sponge. And tea is weak toilet water. just talking to someone who understands, well it doesnt fix it but as bt used to say. Its good to talk
Oh my gosh Karen all your comments sound vaguely familiar... I am almost seven years post injury and the old me skipped town back then and never came back, my short term memory is still shot and I have the concentration and attention span of a dead goldfish... I seriously suffer from "ooh look shiny.... .." and hours slip by completely unnoticed if I don't force them to work for me. None of my previous function ever returned and in Life Part Two I rely on gizmos, gadgets and strategies to get me through the day.... Memory aids clinic was a life saver for me.
BUT that said it is not all doom and gloom...life is interesting and I am actually way less stressed than previously...I guess if I don't remember it I can't stress about it. I /we have slowly learned to adjust and over time the good stuff started to outweigh the not so good.
I have no choice but to keep a journal or miss my life altogether and that is where I gte my information about the past 7 years... When people told me I was "Lucky to survive" and that it was "still early days yet", I actually wanted to punch them ...so I won't do that to you...Instead I will just say hello fellow traveller
It makes sense to me. Often when I'm trying to explain something to someone I end up throwing my hands in the air in frustration and saying "You know what I mean" because I can't get the correct words out. Or they don't come out in the right order. I try to treat it as a joke but it really isn't funny. You may relate to this....last week, I needed to blow my nose. So I opened the cupboard and took a plastic bag out to use. It feels insane sometimes, having to double and triple check what I'm doing. Certain things have a smell, like fresh paint, shampoo and deodorant, but they all smell the same, and it isn't any smell I recognise. I miss the smell of fresh coffee, cut grass and bacon cooking, that's something I struggle to explain to anyone. And the food thing, the only positive is that I can buy the supermarket own brands now without worrying whether they taste bad. Like you, I try not to dwell on it because it hurts so much but sometimes I'm caught unawares. It does help to talk about it with someone who really knows what it's like.
Funny the emotions,"lucky to be alive " can invoke isn't it? It's a standing joke in our house now, " you could be dead" was said, and still is, so often to me I laugh now and even say it myself , people just don't understand nor will they unless they experience the same problems and we wouldn't wish it on anyone, best wishes Janet x
I feel so so much for you and your children and I so glad you have their support and that of the community brain injury team. Unfortunately that was not available in my area 13 years ago (or if it was we certainly were not told of it) I have looked at some of my posts on here and I think OMG I sound really self pitying - I don't mean to, honestly, but the years of fighting authorities, medical "experts", and yes even my son, have left their toll. I feel I have turned into a bitter person that I do not like very much.
Certainly in my area the medical profession do not, as you say Bettyk try to persuade my son that there is something wrong, they positively welcome his automatic reply "I'm alright" They don't have to do anything then do they? A stock response is "well he's an adult - he has capacity,nothing we can do, he has to ask us for help" They accept his epilepsy as even he, on times, has to acknowledge his bizarre behaviour, the cuts the bruises etc., He has medication for that (I feel it doesn't help much) He sees the neurologist once a year (if he is lucky) I take him to the hospital, he does not allow me to attend his appointment as "I'm an adult I'm not having my mother coming with me" I am assuming his stock answer is, as usual, "I'm alright". So nothing changes and life goes on - the anger (I don't know why) against me, the temper tantrums if he senses the slightest criticism, the fixation on certain things. Am I having a bad day? - perhaps. I seem to be having a lot of them lately.
I just wish that head injuries were better understood even by the "experts" - There is no "one size fits all !!".
Hi truthtell,
I feel for you and no exactly where you are coming from. It is such a fight when you entered a world you have no control. I just posted a question on neuro rehab, which explains some of my fight. Its rough and I am sorry, but if it helps just wanted to say we experienced a monumental battle as well. I don't know if it helps, but when I found this forum, it was such a relief as I felt phew, its not just me.I felt (and still do some days) like I was going potty. I was fine though before I landed on my head.
I often say the easy bit was getting run over the hard bit was everything that followed. I thought after my accident that was it and we would be looked after and like magic, I would get better! It wasn't the case. On top of the world you forced into, trying to get the right help makes it so much worse.
Truthtell I feel that you are being a bit hard in yourself. From what you have been through, you have every right to feel the way you are. I feel that carers often get over looked and they to need help and support.
You sound tired and it sounds like you need a bit of respite. I know i keep saying about Headway helpline. They are there for carers to. Without them we would have been lost. They understand and have helped me to realize all the difficult stuff we have experienced is normal in the situation we are in. Maybe visit your GP as well or see if you could get some respite care from somewhere just so you can take a break.
Just out of interest what anti epileptics is your son on? I am on Keppra and comes with it the well no Keppra rage (google it). Apparently men suffer from it more.
Hi scrumpy77', I wish you well and make sure you take it slowly and get all the support you can. I also want to say what a brilliant way you have with words x
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Don't know where to turn
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For Mrs Balfy and Dorset Charlie...
Has anyone lost complete confidence in their memory that you can never be 100% sure of anything or your memory gets everything mixed up?
